tag:blogger.com,1999:blog-82561311560581739212024-02-07T07:13:54.223-05:00ELAINE DEWARELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-8256131156058173921.post-87328665326230213172021-10-30T13:46:00.004-04:002022-09-18T16:12:40.799-04:00Who's Afraid of Angela Rasmussen?<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeGVqWQZa9RDmhEL6XGRGcb01zxKhWupaXCGek0D9a_JYlCbr7n0upcOw4zfg3f9OehuxfRdrdCHzFOxktugcikQFENhgjfcMGNFwiOIqm3hETyffNgH6eXwyCJG3gTDANES9-Ictgfjdd/s2048/pexels-cdc-3992933.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1152" data-original-width="2048" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeGVqWQZa9RDmhEL6XGRGcb01zxKhWupaXCGek0D9a_JYlCbr7n0upcOw4zfg3f9OehuxfRdrdCHzFOxktugcikQFENhgjfcMGNFwiOIqm3hETyffNgH6eXwyCJG3gTDANES9-Ictgfjdd/w400-h225/pexels-cdc-3992933.jpg" width="400" /></a></div><br /><span style="font-family: helvetica;"><br /></span><p></p><p><span style="font-family: helvetica;">Once upon a time, scientists explained their findings and opinions in peer-reviewed journals or in carefully worded lectures delivered at scientific meetings. Now science moves at internet speed and Twitter has taken the place of learned societies as a favored forum. In the white hot propaganda war over the origin of SARS-CoV-2, scientists on opposing sides of the lab-leak versus nature debate have taken to Twitter like penguins in search of lunch in Antarctica's waters. There they heave nasty adjectives at their opponents with all the subtlety and care of the late Rush Limbaugh. Recently, a virologist named Angela Rasmussen (who claims over 200,000 Twitter followers), formerly of Columbia University's Mailman School of Public Health, and now with the University of Saskatchewan's Vaccine and Infectious Disease Organization, threw certain adjectives at me. I had been a guest on a Canadaland podcast explaining the findings of my new book, <i>On the Origin of the Deadliest Pandemic in 100 Years,</i> to Jesse Brown. Ms. Rasmussen, who, since the pandemic began, has turned into a one-woman defender of globalized virological science on as many TV shows, newscasts, magazines, and newspapers as are willing to quote her (see her cv), got herself invited to the Canadaland podcast to denounce my book and her version of the main theory it propounds. </span></p><p><span style="font-family: helvetica;">I don't normally fuss over critiques of my published work. Journalists who throw stones are used to stones being thrown back and a good critique improves the work. I also try to live by a line made famous by champion boxer John L. Sullivan when some drunken twerp challenged him in a bar: "If you hit me," said Sullivan, "and I hear about it...."<i>On the Origin of the Deadliest Pandemic in 100 Years </i>exposes undeclared competing interests, cover-ups by China's officialdom, the manipulation of Canada's National Microbiology Laboratory by China's civilian/military virological establishment, and that labs outside the reach of US regulation have been doing dangerous gain-of-function experiments with USAID and NIH money given to them via a New York charity. The book follows the money and it names names. It shows that science done in authoritarian regimes cannot be trusted and why. So I expected pushback and I welcome it. </span></p><p><span style="font-family: helvetica;">Nevertheless, I must respond to Ms. Rasmussen. She makes too many untruthful claims to ignore. While Ms. Rasmussen is entitled to dump on my book if she's <i>read i</i>t, her critique on the Canadaland podcast made it clear she hadn't. Though I wrote to Jesse Brown, as did my publisher, asking him to attach my rebuttal of her false assertions to her podcast episode, Canadaland decided not to "re-litigate" the matter. Thus, this blogpost.</span></p><p><span style="font-family: helvetica;">I listened with amazement as Ms. Rasmussen began by accusing me of publishing a book that is "riddled with error starting with the title." Why was the title in error? Ms. Rasmussen insisted that HIV/AIDS is the deadliest pandemic in 100 years, not SARS-CoV-2/COVID-19. While it is true that HIV/AIDS has killed about 35 million people over fifty years, Ms. Rasmussen must know that the WHO--which is the international body charged with declaring pandemics---did not declare HIV/AIDS to be one. Killing 35 million over fifty years is bad, but killing at minimum 6 million people around the world (while infecting hundreds of millions) in 18 months <i>is </i>the worst pandemic in 100 years. </span></p><p><span style="font-family: helvetica;">Ms. Rasmussen then asserted that my publisher failed to fact check the book as evidenced by the title. In fact my publisher had four fact checkers go over it from the cover to the acknowledgements--400 pages with over 400 end notes drawn mainly from scientific publications but also from interviews with virologists-- starting with the title.</span></p><p><span style="font-family: helvetica;">Ms. Rasmussen insisted that if only I'd bothered to interview virologists, I would have been set straight on a number of points, including the function of a genetic sequence conserved in all coronaviruses known as the RdRp ( which stands for the RNA dependent RNA polymerase). That's when it became quite clear that she had not bothered to read the book but was responding to what she thought I said in the interview I'd given Jesse Brown. If she had read the book, she would have known how many virologists I tried to interview, and who among them finally agreed to speak with me. One who did consent to be interviewed, virologist Linfa Wang, is a close associate of Shi Zhengli, the so-called Bat Woman of China. It is Shi Zhengli's lab that has become a focus for those arguing that a leak from a lab may have caused the pandemic. I interviewed others as well, but in particular a Canadian government virologist, Basil Arif, who ,since 1998, has worked on the journal Shi edits, <i>Virologica Sinica, </i>which<i> </i>is published by the Wuhan Institute of Virology. Arif has also done important papers with Zhihong Hu, the former director of the WIV and the former boss of Shi Zhengli. Arif has been going annually to the Wuhan Institute of Virology for more than twenty years, which cannot be said of Ms. Rasmussen who admits she doesn't know Shi Zhengli, but knows "friends" of hers, and that she is "honest." Unfortunately, as my book shows, that claim is also far from true.</span></p><p><span style="font-family: helvetica;">When Brown asked Rasmussen why, if my book is riddled with errors, the well-known science writer and editor, Nicholas Wade, had praised it, she replied that Nicholas Wade should be ignored on the grounds that a book he wrote in 2014 defines him as a racist. (Racist is a word she hurls around fairly frequently, along with the epithet grifter.) Wade's views on the subject of intelligence, the subject of his book, are beside the point. The article he wrote in the <i>Bulletin of Atomic Scientists-- </i>describing, among other things, his concern about how leading scientists tried to label as conspiracy theorists all who raised the possibility that SARS-CoV-2 leaked from a lab--finally made it possible for leading major media in the US to publicly consider the question. Instead of speaking to Wade's points, she used a vile name to try to write him off.</span></p><p><span style="font-family: helvetica;">Similarly, she mis-characterized what I wrote about the unusual five year relationship between the National Microbiology Laboratory in Winnipeg and the leading military/civilian virologists in China, including George F. Gao and Major General Chen Wei of the Peoples' Liberation Army.</span></p><p><span style="font-family: helvetica;">She also insisted that I believe the genome sequence known as RaTG13 is the viral ancestor of SARS-CoV-2. In fact, the book makes clear that I believe RaTG13 is a red herring and a symptom of the many things we have not been told about work done in Shi Zhengli's lab. While until recently RaTG13 was the closest <i>published </i>viral sequence to SARS-CoV-2, it is fairly distant and does not have the furin cleavage site which makes SARS-CoV-2 so efficient at causing infection. (We now know that Shi Zhengli, Linfa Wang, and American colleagues Ralph Baric and Peter Daszak sought $14 million from DARPA in 2018 to, among other things, insert furin cleavage sites into SARs-related coronaviruses isolated by Shi's lab. They didn't get that grant, but we don't know if Shi Zhengli got grant money elsewhere and did the planned experiments herself.) My book makes clear that I like best a quite different origin theory proposed by plant virologist Jonathan Latham and his partner, Allison Wilson. They sought to explain why SARS-COV-2 appeared to be so well-adapted to human beings from the start of the pandemic. If it originated in a bat or jumped to humans through an intermediate animal, why were there so few mutations in the first few months of its circulation? This adaptation to humans from the start was pointed to by Alina Chan and colleagues who compared it to SARS's rapid mutation in the first quarter of its circulation. Chan's work was only published as a pre-print (and poohpoohed as such by Rasmussen) but many other scientists in peer-reviewed papers pointed to the same issue, including one paper published in the journal <i>Cell</i> and commented on by Rasmussen herself. </span></p><p><span style="font-family: helvetica;">Latham and Wilson argue that SARS-COV-2, or its direct ancestor, became well-adapted to humans in the lungs of six miners back in 2012. They had been hired to clear bat feces out of a copper mine in Yunnan, China. They got terribly sick with a SARS-like pneumonia. Three died. Samples of serum from them, taken over the course of several months, were sent to Shi Zhengli at the Wuhan Institute of Virology because she was by then expert in SARS-like coronaviruses. Shi only admitted she had those samples after a Masters thesis and PhD thesis describing the miners' illnesses, treatments, and where their samples were sent, were discovered by members of a group of curious volunteers called DRASTIC. Shi Zhengli has still not published anything about what she found in those samples but has confirmed that they remain in her lab and that she revisited those samples "recently." Latham and Wilson argue that studying those samples would have given Shi a ringside seat as a bat virus evolved in real time into something that could easily infect humans. When challenged by Jesse Brown on that point, Ms. Rasmussen said Latham and Wilson are plant virologists, so their argument holds no water. In fact, their argument had already been supported by a study done in the UK and published in a medical journal in February. Doctors there took a series of samples of the virus over several months from a man infected with SARS-CoV-2. These samples were sequenced and showed in real time how the virus adapted through mutation to evade the different treatments tried.</span></p><p><span style="font-family: helvetica;">Toward the end of the podcast, Brown asked Rasmussen if she knew why W. Ian Lipkin-- one of the coauthors of an early paper published in <i>Nature Medicine</i> that claimed a lab leak to be highly unlikely-- had changed his mind and wanted a proper investigation of that possibility. Over most of 2020, that <i>Nature Medicine</i> paper was pointed to again and again as<i> the</i> refutation of any who dared to say a lab leak might have been possible. That paper served the propaganda interests of China, but also the interests of the American institutions that had funded Shi Zhengli's work--USAID, the NIH/NIAID--through EcoHealth Alliance, also a major funder of Lipkin's work at Columbia's Mailman School. Most of the paper's coauthors, including Lipkin, failed to acknowledge any competing interests, such as their relationships with those funders and with China. Ms. Rasmussen told Brown that though she used to work for Lipkin (until 2020),, she did not know why he'd changed his mind. Yet Lipkin had been widely quoted on that subject. He said information had emerged about very dangerous gain-of -function experiments done by Shi Zhengli and her colleagues in low security labs. This is "unsafe." Even if Ms. Rasmussen did not read those articles, if she'd read my book she would have known exactly why Lipkin changed his mind.</span></p><p><span style="font-family: helvetica;">Ms. Rasmussen may be a terrific virologist but critiquing a book she did not read is a dubious scientific practice. She might want to reconsider as well her strong support of global cooperation among scientists without regard to the conditions under which some scientists work. In particular, she should rethink whether we can rely on science done by colleagues working in authoritarian regimes. Early in the pandemic, China's officials made clear to its scientists that they must get official permission to publish anything on SARS-CoV-2,<i> or else,</i> and that getting that permission would depend upon whether an article fit the propaganda interests of the government of China. Scientists in the West need to take care to avoid being dragged into China's propaganda machinery, which is extensive. The Propaganda Department of China regards scientific publishing as part of its purview and reports directly to the highest leadership.</span></p><p><span style="font-family: helvetica;">Ms. Rasmussen's appearance on the Canadaland podcast was clearly useful to China. CGTN-- the China Global Television Network-- took note of it and published on its website an article that bears this false title: "Virologist refutes Dewar's theories....'" </span></p>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com5tag:blogger.com,1999:blog-8256131156058173921.post-18363733137494654902021-09-11T09:00:00.004-04:002021-09-11T09:00:00.200-04:00Virtual Book Launch for On the Origin of the Deadliest Pandemic in 100 Years: An Investigation<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilZO7C_KPxuTnmTi6eoi6hyphenhyphen6eVn5Y32CAVEhnRqB4zZUeLES_HA9ZY9ZLCJOxUZfAzG63nBERMG7XC-9OpV5M73wvmzYhzZi_XVRlLq74r82H1DGkJa440DcOjopVETQU27JidLMAL8l_T/s2048/9781771964258_FC.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1189" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilZO7C_KPxuTnmTi6eoi6hyphenhyphen6eVn5Y32CAVEhnRqB4zZUeLES_HA9ZY9ZLCJOxUZfAzG63nBERMG7XC-9OpV5M73wvmzYhzZi_XVRlLq74r82H1DGkJa440DcOjopVETQU27JidLMAL8l_T/w233-h400/9781771964258_FC.jpg" width="233" /></a></div><br /><span style="font-family: helvetica;"><br /></span><p></p><p><span style="font-family: helvetica;">Please join me for the virtual launch of my new book, <i>On the Origin of the Deadliest Pandemic in 100 Years: An Investigation</i>. Dan Wells, founder of Biblioasis, my publisher, has asked the wonderful novelist, non fiction author, and former Harrowsmith Editor, Wayne Grady to interview me. While the book has garnered interest from the CBC, the <i>Globe and Mail</i>, and the <i>Toronto Star</i>, there is a lot to discuss that newspaper articles and national news reports cannot convey which might be of interest to anyone getting ready to cast a vote in the federal election. The format permits us to take questions from any who have them.</span></p><p><span style="font-family: helvetica;">The interview will be live-streamed starting at 6 p.m. on Wednesday, September 15, 2021. You can view the live stream and participate on <a href="https://www.blogger.com/u/3/blog/post/edit/8256131156058173921/1836373313749465490#">Facebook </a>or <a href="https://www.blogger.com/u/3/blog/post/edit/8256131156058173921/1836373313749465490#">YouTube</a>.</span></p><div class="yiv3061111641gmail_default" style="background-color: white;"><span style="font-family: helvetica;">Hope to see you there.</span></div><div class="yiv3061111641gmail_default" style="background-color: white;"><br /></div><div class="yiv3061111641gmail_default" style="background-color: white;"><span style="font-family: helvetica;">Elaine</span></div>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com1tag:blogger.com,1999:blog-8256131156058173921.post-47187929973050412632021-08-05T18:09:00.002-04:002021-08-05T18:21:50.276-04:00My new book: On the Origin of the Deadliest Pandemic in 100 Years: An Investigation<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7y17MfCDbhyphenhyphenIM5MRg1c_fBrax1EOVs9Q_8LwijxM2fj6ZwdnIc5_ckTsSgjFCDml2YaDtaiRFzhJvBYvShd91_quXRTxf0YtW9yyaCGx3YN1LlOBAOADSTcCUS1PkaPz9PJC11LWSgTo9/s2048/9781771964258_FC.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="On the Origin of the Deadliest Pandemic in 100 Years: An Investigation" border="0" data-original-height="2048" data-original-width="1189" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7y17MfCDbhyphenhyphenIM5MRg1c_fBrax1EOVs9Q_8LwijxM2fj6ZwdnIc5_ckTsSgjFCDml2YaDtaiRFzhJvBYvShd91_quXRTxf0YtW9yyaCGx3YN1LlOBAOADSTcCUS1PkaPz9PJC11LWSgTo9/w233-h400/9781771964258_FC.jpg" title="On the Origin of the Deadliest Pandemic in 100 Years: An Investigation" width="233" /></a></div><br /><i><br /></i><p></p><p><i><a href="http://biblioasis.com/shop/forthcoming/on-the-origin-of-the-worst-pandemic-in-100-years/" target="_blank">On the Origin of the Deadliest Pandemic in 100 Years: An Investigation</a></i> is the title of <a href="http://elainedewar.blogspot.com/p/books.html" target="_blank">my new book</a>. It is the product of more than a year's hard digging into the origin of the SARS-CoV-2 virus. It will be out by the end of August in Canada, the first week in September in the US. </p><p>It is without doubt the hardest book I've ever written. Doing an investigation during a pandemic required me to reinvent the tactics I used when I started in journalism in the early 1970s. My first job for <i>Maclean's Magazine</i> was to research a story on the planned Montreal Olympics for a writer who had strong opinions about why it shouldn't go forward, but no facts to back them up. To do that project, I rarely left the periodical section of the University of Toronto's Robarts Library because what I found there about past Olympics --all had involved financial boondoggles-- was great support for the writer's argument. ("You found this in the library? In the newspapers? In magazines? Really?") To do this one, I rarely left the house, working instead on two computers and a smart phone which provided instantaneous access to a tsunami of information. In the beginning, when we were locked down, no one was allowed to leave their home for any reason other than to buy food (and toilet paper) or for a medical emergency. Even if I'd ignored those rules, it wouldn't have got me anywhere. Most of the researchers I wanted to interview don't live in Canada and weren't in their labs anyway. The borders were shut. Most government officials were working from home. Parliament was closed. So I was forced to develop my own imperfect version of the method of inquiry once wielded like a broadsword by the legendary US journalist I.F. Stone. His most important scoops came from careful reading of public documents and deft use of the Freedom of Information Act. </p><p>I read everything I could find in learned journals, in pre-print literature and on academics' blogs about the nature of SARS-CoV-2, its relationship to other coronaviruses, its chemistry, its evolutionary history, the very unusual structure of its genome and its near perfect adaptation to human beings from the very start of the pandemic. I scoured the worldwide daily press, dived down many internet rabbit holes, made too many access to information applications. Most knowledgeable researchers, to my surprise, didn't answer my emails. That was a first: usually scientists want to discuss their work with journalists. It helps them climb the tenure ladder to get their ideas circulating in the broader community. More astonishing was the lengths to which civil servants went to protect themselves and their political masters from embarrassment by means of improper redactions and outright refusals to comply with the access to information law. As I figured out who I had to talk to, if they responded (a few did) I interviewed them by means of email and telephone. But it was mainly through their published works that I came to know then. What I learned about the way globalized virological science has been practiced over the past twenty years surprised and enraged me. Certain names kept coming up: Shi Zhengli, Linfa Wang, Peter Daszak, Ralph S. Baric, Kristian Andersen, Zhihong Hu, Xianguo Qiu, Keding Cheng, Chen Wei, E.C. Holmes, George Gao. </p><p>The book is both a detection narrative and an exposition of the political and scientific context for the worst public health disaster since the great flu epidemic of 1918/19. It points fingers. It names names. It describes the way in which the government of China, from the very beginning, withheld vital information and promoted false-by-omission scientific narratives in order to deflect blame even as it permitted the virus to spread. China's relentless PR campaign began at the end of December, 2019 even as the first mention of a nasty pneumonia circulating in Wuhan found its way to social media sites and from there to the West. China was helped in its efforts by the WHO, whose job is to protect the world from such disasters, and even more shockingly by some of the world's best scientific journals, our leading coronavirus experts and the US institutions which fund their work. All were more anxious to protect their interests than to pursue the truth. The book describes in detail how China used the globalization of biological science as cover for dual-use research that could not be done at home, reaching into the most secure laboratory in Canada for the study of the most dangerous pathogens (Ebola, Marburg, Nipah). China's top military/civilian scientists (there is no boundary between them) used it as if it were their very own lab for years. </p><p>More than 4 million people are known to have died from SARS-CoV-2 since December, 2019. That number is at least twice as high if suspected, but not certified, COVID deaths in India are factored in. It will continue to grow as the virus wends its way throughout the mostly un-vaccinated developing world, mutating as it goes, stumbling on ever more clever means to infect humans and the susceptible animals that live near us. These deaths are not and will not be the result of an unavoidable accident of nature: they are and will be the product of the very best human minds.</p><p>As the 4th wave begins, it's time to hold some of those humans to account.</p><p>Stay tuned.</p>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com7tag:blogger.com,1999:blog-8256131156058173921.post-46568303515936314842020-03-08T09:34:00.000-04:002020-03-13T15:52:36.101-04:00Part V: Reflections on the Second Wave: A Feminist Journalist Remembers Herself <div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br />Neither <i>Feminist Acts </i>nor<i> Inside Broadside</i> bring the story of the women's movement up to date. Both publications were shut down before, or as, the Second Wave was supplanted by the Third. And much later, the Third gave way to the Fourth. These publications were also gone long before gay marriage became legal, and the Government of Canada apologized for the way it had treated gay men and lesbian women in the armed forces, before Canadian women flew fighter jets, captained ships, won Nobels in literature and physics, floated around in the international space station, before the Prime Minister of Canada called himself a feminist, made sure his cabinet was 50% female, and appointed as the second most powerful person in his government Chrystia Freeland, a woman raised in part in a feminist collective in Edmonton.<br /><br />Yet it is the writers of the Second Wave who may best explain what troubles us still--the awful hinge that ties women of ambition to predatory men. This is where the Fourth Wave, better known as #MeToo, enters the narrative. I've lost track of the number of cases of powerful men (like Cosby, Ghomeshi, Schultz, Ailes, O'Reilly, Epstein, Prince Andrew, Trump, etc. etc.) who have been made to answer the accusations of once ambitious women (both of colour and white skinned privilege) who turned to them to advance their careers and found themselves being raped, groped, or threatened instead. As Brownmiller showed us so long ago, abusers enabled by Patriarchy take particular pleasure in putting women of ability and ambition back in the old place, the subjugation and silent place, by means of verbal and physical assault, followed by non disclosure agreements.<br /><br />Just as mainstream publications featured the works of the ambitious female journalists who led the Second Wave, the Fourth Wave now gathers momentum from the published stories about talented women, many of them journalists, who decided to take on those predatory men in the public sphere and in the courts. The abused female journalists of Fox News decided to sue the bastards. Others told their stories in public with the help of reporters and major media. These include Jodi Kantor and Meghan Twohey of the <i>New York Times</i>; Ronan Farrow and the <i>New Yorker</i>; Jesse Brown of <i>CanadaLand</i>, and Kevin Donovan at the <i>Toronto Star</i>. These reporters and publications gave ambitious, but silenced, women, a platform to call out the powerful men who'd used their determination to contribute to the world as the means to lure them in. After the newspapers and magazines ran their stories, the police and prosecutors got involved. <br /><br />This is why Mr. Weinstein is now sitting in the medical ward of an American prison in New York having been found guilty of rape. More charges await him in California<br /><br />Maybe sisterhood will make a comeback too.</span></div>
ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com5tag:blogger.com,1999:blog-8256131156058173921.post-49414694575429685012020-03-08T09:33:00.000-04:002020-03-09T09:33:34.779-04:00 Part IV: Reflections on the Second Wave: A Feminist Journalist Remembers Herself <div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />The Third Wave took the Second Wave discourse on power and gave it a hard twist. Third Wave activists looked askance at the institutional power that had been gathered by Second Wave feminists as they built shelters, rape crisis centers, abortion clinics, legal aid clinics to serve women suffering in a misogynist world. Third Wave feminists insisted on the handover of this sort of power acquired by "women of white skinned privilege," as many Second Wave feminists came to be called, to women of colour. This notion of "white skinned privilege" struck me as plain bizarre when I first heard the phrase used at a women's conference financed by the Government of Canada. I thought it was a truly weird form of inverse racism, a divisive idea at odds with the feminist ideal of a sisterhood that includes all women regardless of class, race, or religious inclinations. I could not see how applying preference and deference by race would help anyone. Aside from the fact that the whole concept of race has no scientific validity--just appalling social power-- I also could not see how this "white skinned privilege" applied to me. I am Jewish, and for a large part of the last century, Jews were considered a race apart, not white at all. (As we have learned recently, white supremacists still insist that Jews are a race apart and shall not "replace them".) I didn't feel privileged, I felt as if I'd earned my way.<br /><br />And yet: I had clearly acquired privilege, like so many of my peers all of whom were "white." The friends I grew up with had acquired professional credentials or gone to graduate schools and carved out careers for themselves with significant hope of achievement and recognition. Yes, we all had stories to tell about the jerks at the office who thought our bodies were theirs to manhandle. Yes, we could regale each other with hard truths about the boss who refused to pay to us what was being paid to a man doing the same job on the grounds that the man was married. As if marital status mattered a damn to the work done. Yes, we all experienced making an argument in a meeting that wasn't heard or acknowledged until a man repeated it-- as if it was his idea. Yes, we had all experienced a sense of encroaching danger when walking by a man on any urban street at night. But I was also one of Maryon Kantaroff's ambitious women, born lucky into a middle class family that educated me, with a mother pleased to see me use my talents, and all women did not have that experience. The magazine that most allowed me to invent myself as a writer, <i>City Woman</i>, aimed its ads at women like us. I was not seen as a woman of colour when I went out in the world, so: I wasn't routinely followed to make sure I wasn't shoplifting as I walked through a supermarket or a clothing store; I wasn't selected for arrest if I participated in a demonstration because of the tilt of my eyes of the nap in my hair; I wasn't stopped and asked to show my driver's license and ownership while driving because of how I looked. <br /><br />As barriers fell, and we climbed up, my friends and I, getting closer and closer to those who exercised real power, closer and closer to achieving our ambitions, it was easy to forget that we were leaving sisters behind. Nothing better illustrates where our ambitions took us--took me--than what happened when Judy Chicago's Dinner Party came to Toronto. <br /><br />The Dinner Party is a fascinating visual argument about how women artists' works were ignored by the male art world even as their talents were taken advantage of. It was shown at various galleries across North America in the late 1970s, and Chicago published an art book to go with it. Leading male art critics pissed all over the Dinner Party. The <i>New York Times</i>' critic called it vulgar. But museum goers loved it and turned it into a major gallery money maker. Fifty thousand people went to see it when it came to Toronto's Art Gallery of Ontario.<br /><br /><i>Branching Out</i> reviewed the book. <i>Broadside</i> reviewed the show. Both found considerable fault. In her "scathing" review of the book, entitled "Vaginal Hype," author Cathy Hobart declared she had spent four days visiting Chicago's studio which she accused Chicago of running like a sweatshop. In Broadside, Susan Crean critiqued the show on the grounds that a fee was charged, that the iconography was too obscure and the artists referenced too unknown to mean anything to anyone unless they paid for the guide, and that "nine of the 13 guests on the third side of the triangular table are American and all but Sacajawca and Sojourner Truth are white, middle class artists and social reformers." The point, said Crean, is that "Chicago's politics are not particularly radical. Her visualization of feminism, rhetoric aside, fits right in with the trendy notions of 'liberated' upper class matrons."<br /><br /><i>City Woman</i> also ran a story on Judy Chicago and The Dinner Party, written by Natalie Veiner Freeman who helped bring the show to the Art Gallery of Ontario. Veiner Freeman definitely fit anyone's idea of "upper class." She was from a wealthy family and was the spouse of Senator Jack Austin, then a member of Pierre Trudeau's cabinet and inner circle. The night before the show opened in Toronto, Veiner Freeman organized a dinner party to celebrate it. It was held in an empty house rented for the occasion with a marquee attached. Judy Chicago was her honoured guest. So was Prime Minister Pierre Trudeau who arrived in a limo with Sylvia Tyson as his date. Maurice Strong, the founder of PetroCanada among so many other achievements, came too, and read contracts all night. Other guests included Adrienne Clarkson and her partner, author John Ralston Saul, who had worked with Strong at PetroCanada; Margaret Atwood and her partner, author Graeme Gibson; the Editor of <i>City Woman</i> and her then beau; my husband (ordered to keep his mouth zippered as Trudeau knew him all too well from his days on W-5), and me. We all got a private preview of The Dinner Party with Judy Chicago explaining it to us, just us, no line-up, no crowds. As we walked around her three tables, the Prime Minister and Sylvia Tyson went first with Chicago, followed by Adrienne Clarkson, then a national television star who, in twenty years, would be the first woman of colour appointed Governor General, and Margaret Atwood, already Margaret Atwood though The Handmaid's Tale had not yet emerged from that fertile brain. The two of them walked side by side, they'd been friends for years. The rest of us fell in behind, our positions in the line emblematic of the gradations of social power. Back at the house, Veiner Freeman's dinner tables had been set up like those of The Dinner Party. There were a few small plaster sculptures of black jockeys in livery set out at the door and near the tables, the kind seen on front lawns in the deep South, as if to suggest we were in some southern ante-bellum mansion.<br /><br />I learned something that night-- that feminists and journalists must never get cosy with the powerful. It makes us forget where we've come from, it makes us susceptible to inappropriate demands, it makes us blind even to our own interests. <br /><br />It was exclusion from this sort of power that made women of colour demand that white middle class feminists step back from the organizations they'd founded, and hand them over. It was exclusion from government grants in favour of immigrant and black women which made the collective that published <i>Broadside</i> hand the magazine over at the end of 1989. As Masters explained at the time:<br /><br /> "The government's supposed commitment to funding 'doubly disadvantaged' groups (Black women, immigrant women, visible minority women--though clearly not lesbian women) is a reflection of a social movement affecting all feminist groups in Canada. The most crucial aspect of feminism in the past few years has been the efforts to incorporate anti- racist perspectives into feminist practice and analysis. White women have been forced to deal with the issues raised, forced to face the fact that it may no longer be the role of White women to frame the debate and direct the struggle. With the growth of global feminism in the past decade, White feminists are no longer the majority if they ever were." <br /><br />It was not, Masters continued, that women of colour did not share the issues <i>Broadside </i>covered (which she lists as violence against women, pornography, and, oddly, nuclear arms), it was that <i>Broadside's </i>White lesbian collective had a lopsided view of things, given its makeup, even though it had tried to be anti-racist. The collective, she said, had negotiated with the Black Women's Collective to send their own offering, <i>Our Lives,</i> to <i>Broadside's</i> subscribers instead of giving them their money back. <i>Broadside</i> was therefore folding, but not feminism, Masters insisted. <br /><br />In this Masters was also wrong: Second Wave feminism, in particular its ideal of sisterhood, was folding. And that too had been signaled in major media first. <br /><br />At the end of 1988, writer Marlene Nourbese Philip, a woman of colour, picketed as racist an international PEN Congress attended by writers from all over the world. Author June Callwood, one of Toronto's leading White feminists, was then president of the Canadian PEN chapter and had organized that event. On her way home after it was over, the sight of Nourbese Philip with her sign made Callwood so mad she told her to fuck off. The story made the <i>Globe and Mail</i>. Callwood quit the paper, where she was "un-fireable," to save it from the problem of her presence. Three years later, Callwood was again pushed to resign from the board of Nellie's, a feminist women's shelter she'd helped found, not long after Prime Minister Mulroney named Callwood to a blue ribbon panel to convince Canadians to vote in favour of the Charlottetown Accord in a national constitutional referendum. NAC, then led by Judy Rebick, a Trotskyite who had worked on behalf of Morgenthaler when he was criminally charged for performing abortions, and then as an NDP activist, was opposed to the Accord. A group of Black women, some also NDP activitsts, moved in on Nellie's, getting themselves appointed to its egalitarian staff and board. At one memorable board meeting one of them called Callwood a racist and out the door she went again. I wrote a long story about the who, what, where, and why, for</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>T</i></span><i style="font-family: "helvetica neue", arial, helvetica, sans-serif;">oronto Life</i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">. While it was hard to get the women involved to talk to me ( mainstream press after all) I eventually found that the motive behind Callwood's ejection was that her absence made it easier to take control of Nellie's, attractive due to its institutional power (not to mention $600,000 squirreled away in its bank account through curious means.) For putting this story in print, <i>Toronto Life</i> was picketed, scaring the crap out of the woman running reception. Judy Rebick wrote a letter of complaint to the Editor. Failing to mention that she had known me for twenty-five years, that we had lived in that commune together for some of those years, she referred to my work as the worst example of yellow journalism she'd ever seen in the mainstream press. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br />So much for sisterhood.</span></div>
<span id="docs-internal-guid-42e7de45-7fff-e44e-e5e3-d60e9184cc8d"><br /></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-73840260750489961602020-03-08T09:32:00.000-04:002020-03-08T09:32:05.873-04:00Part III: Reflections on the Second Wave: A Feminist Journalist Remembers Herself <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In <i>Feminist Acts, </i>Tessa Jordan suggests that hundreds of small, Xeroxed feminist newsletters plus a few magazines and journals with tiny circulations, carried Second Wave ideas to Canadian women. Apparently, Canadian feminist scholars refer to these homemade publishing ventures as the Print Project. But again, that is not the whole story, not even the main story. Television may actually have played a more formative Second Wave role in Canada, thanks to Bonnie Kreps.<br /><br />Kreps, a Danish immigrant to the US, was a Phi Beta Kappa graduate of Reed College with an MA in English from University of Pittsburgh when she arrived in Toronto in the middle 1960s. Her husband had been appointed an assistant Professor of high energy physics at U of T and they had a young daughter whose care had fallen primarily on Bonnie's shoulders as she was earning her Ph.T. ( otherwise known as Putting Hubby Through). She knew the Problem With No Name from hard personal experience and was a committed radical feminist. She was in close contact with women in New York, especially her sister Anne Koedt, who were reformulating de Beauvoir's ideas, women whose seminal feminist works would be published only a few years later. <br /><br />Kreps, representing no one but herself, presented a Second Wave brief to the Royal Commission on the Status of Women in 1968. She set out the radical feminist analysis of the damage done to women by socially constructed and discriminatory gender roles, and why there must be a radical change in belief systems, not just laws, if women were ever to get out from under them. In other words, she demonstrated how it is that the personal is political, the core idea of the Second Wave, an idea later reflected in the Commission's report. By 1969, Kreps was working at CTV. She launched what became a distinguished filmmaking career with a special documentary for CTV's flagship public affairs show, W-5, called After the Vote: A Report from Down Under. The show went to air before an audience of millions and introduced many Canadians who did not read Chatelaine to Second Wave ideas-- even to those of Ti- Grace Atkinson who called for female separatism. That show was made five years before <i>Branching Out</i> published its first issue, ten years before <i>Broadside</i> was launched. <br /><br />My husband, Stephen Dewar, was Krep's colleague at CTV which is how I met her, became her friend, and joined the radical feminist group she co-founded called The New Feminists. Its meetings, its consciousness-raising sessions, allowed me to hash through with older and more experienced women the ideas still burning in my brain from reading de Beauvoir. They shared with the group their lived experience of how gender roles oppress: how raising children fell unequally upon women regardless of how much they earned; how men at the top of institutions thought it reasonable to promote men ahead of women regardless of competence simply because they were men; how rape and other forms of physical brutality were used by men to keep women in fear and in their place; how ignorance of our bodies denied many women sexual pleasure; how Patriarchy amounts to a socially organized and socially sanctioned abuse of power. At first there were only a few women in this group. By the time it fell apart a few years later it had 300 members and many other such groups had formed across the country. In a few short months as a New Feminist I learned that if I didn't set aside the notions drummed into me since childhood concerning motherhood, wife-hood, and femininity, I would live and die without ever having a voice of my own. And I wanted that voice.<br /><br />To give Jordan and Masters their due, their books made me remember my own feminist history. Until Jordan described <i>Branching Out's</i> organizational issues, I'd forgotten how important it was to Second Wave feminists that our organizations be feminist in their internal operations. A vital insight of the Second Wave-- a corollary of the dictum that the personal is political--is that socially approved abuse of power in all its forms-- legal, economic, social, but especially physical-- is what circumscribes women's lives. Radical feminists argued that the way out of bondage was to be the opposite of the male slave master, to embrace egalitarianism, to operate through consensus and without leaders so as to refrain from imposing new structures of power on the previously voiceless and powerless. The opposite of the feminist was the Queen Bee--a woman who fought her way to the top of an organization only to use her power to suppress her sisters.<br /><br />Both Jordan and Masters discuss how this discourse on power permeated operations at both <i>Branching Out</i> and <i>Broadside</i>. Though<i> Broadside</i> was incorporated as a for profit entity ( to avoid being "taken over" by hard left groups trying to foment a different kind of revolution), it functioned as a leaderless collective. Masters asserts that not one single vote had to be taken in ten years, because, as she put it, its members knew to step back when someone else knew more. By contrast,<i> Branching Out </i> started as a non profit, consensus-driven feminist collective, but according to Jordan, soon discovered that a rudimentary hierarchy was needed. There had to be an editor to drive the publishing process or deadlines would be missed and the magazine would not get to the newsstands. Editing was also necessary for clarity and readability (though at other feminist journals editing was deemed to be power abuse and therefore verboten). Instead of power-free egalitarianism, <i>Branching Out</i> offered its volunteers colleagial autonomy, similar to the way we worked at <i>Maclean's Magazine</i> at that time. We had a boss, Peter C. Newman, who could fire us if we screwed up, but we dreamed up our own story ideas which were then thrashed out further in editorial meetings. Submitted pieces were circulated to all editors for comment and if there were disagreements they had to be resolved or the piece would not be published. At one editorial meeting when <i>Maclean's</i> still had an outside editorial board, I had a fight with Barbara Frum, then a member, over whether or not I should ask Myrna Kostash to write a piece on rape as a crime of power aimed at the mental as well as physical subjugation of women. Frum insisted rape is an assault like any other: I countered with Brownmiller's argument, that it is the very definition of the abuse of power by men over women, the fear of which keeps women in their place. <i>Maclean's</i> ran Kostash's story. <br /><br />But as with so many theories about social change, the main product of this insight about power was not freedom from it, but endless disputes in feminist groups over who was acting like a leader when there weren't supposed to be any, who was hogging the limelight, who was actually making decisions while merely pretending to honour consensus. While we recognized how we suffered from the abuse of power, we failed to appreciate that social hierarchy is basic to all primate societies and not easily curtailed. More to the point, we failed to appreciate how consensus could become a vise throttling the ambitions of the women who drove the Second Wave. <br /><br />Renowned sculptor and fellow New Feminist Maryon Kantaroff explained this to me when I interviewed her in 1977 in Toronto for a story in <i>Weekend Magazine</i> on why the New Feminists folded. ( This piece is referred to in <i>Inside Broadside</i> with some disdain). Kantaroff explained that she had grown tired of moving at the pace of the slowest, but even more tired of being the group's workhorse. "All of us who were the real driving forces were, without exception, very personally ambitious women. Feminism liberated our personal ambitions," she said. "...There came a time when we could say, now, my work. I've got to go ahead." Kantaroff by then had come to believe that to make change, power had to be grasped, it would never be given up voluntarily by those wielding it. That's why she intended to start a political party --The Feminist Party-- that would be "totally elitist, totally elitist...They'll be knocking down the doors to be in this elite group of feminists who are organizing a political structure." <br /><br /># # #</span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com2tag:blogger.com,1999:blog-8256131156058173921.post-65308482512399564762020-03-08T09:31:00.000-04:002020-03-08T09:31:03.575-04:00Part II: Reflections on the Second Wave: A Feminist Journalist Remembers Herself <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Betty Friedan's ideas were old hat in Canada by the time <i>The Feminine Mystique </i>was published in 1963. Canadian women had been writing and publishing on legal and cultural means of suppression ever since Doris Anderson became the Editor of <i>Chatelaine </i>in 1958. Doris' managing editor, Jean Wright, refused a chance to excerpt <i>The Feminine Mystique</i> because <i>Chatelaine</i> had already covered everything in it.<br /><br />Yet Tessa Jordan appears to accept <i>Branching Out's </i>founding Editor Susan McMaster's claim that in 1972, before <i>Branching Out </i>was first published, " there was no feminist periodical in Canada that sought a national audience and had the newsstand appeal of <i>Ms.</i> or<i> Chatelaine</i>." She is right about the newsstand appeal of <i>Chatelaine</i>, but this suggests <i>Ms</i>. and<i> Chatelaine</i> were equivalent, though they were not, while simultaneously implying that <i>Chatelaine</i> was not a feminist magazine. And yet it was. Regardless of its ads and fashion features, under Doris Anderson's editorial direction <i>Chatelaine</i> carried feature after feature, column after column, editorial after editorial, detailing the unfair laws and social restrictions which hedged women (and men) in coffin-like sex roles. Her editorials urged women to get up off their knees and change them. She raised<i> Chatelaine's</i> circulation from about 460,000 to over a million not by shying away from feminism, but by featuring it, and pointing out that thanks to the First Wave, her readers had the right to vote, to make their views known to MPs, to stand for election and get things done. <br /><br />Without<i> Chatelaine </i>and its wide audience, there would have been no Royal Commission on the Status of Women in 1968. When feminist activist Laura Sabia threatened then Prime Minister Lester Pearson that he'd better set that Commission up or she'd have two million women on the front lawn of Parliament Hill protesting,<i> Chatelaine's </i>popularity and seriousness made that threat credible. And without that Royal Commission reporting its 137 recommendations in 1970, (the same year Germaine Greer's <i>The Female Eunuch,</i> Millett's <i>Sexual Politics</i>, Anne Koedt's <i>The Myth of the Vaginal Orgasm</i>, Firestone's <i>The Dialectic of Sex </i>were published) there would have been no National Action Committee on the Status of Women, better known as NAC, funded by Ottawa. NAC hounded politicians on important issues year after year: its arguments about how and why immigrant and racialized women were being left behind ushered in the Third Wave in Canada. <br /><br />Without that Royal Commission, there also wouldn't have been an Advisory Council set up to advise the Minister of the Status of Women (another product of the Royal Commission). The story of the blow-up over that Council is only touched on in <i>Inside Broadside</i> but it really matters. Doris Anderson was appointed to it and then became its President after she left Maclean-Hunter in a blaze of fury because its board did not appoint her Editor of <i>Maclean's.</i> She then ran but failed to get elected in a federal by-election as a Liberal. By the time she joined the Council in 1980, it had become a tame extension of the Status of Women's Minister's will. Thinking of Doris Anderson as a political hack who would do what he deemed to be politically useful may have been the biggest political mistake ever made by Lloyd Axworthy, then Minister of the Status of Women. <br /><br />By 1982, a joint committee of the House of Commons was voting on the wording of the Canadian Charter of Rights and Freedoms, the framing document for the about to be repatriated Constitution. Needless to say, the Charter mattered to the future status of Canadian women. It was well known that some leading feminist constitutional lawyers were very concerned about how the Charter's proposed wording would affect women. Yet Axworthy twice cancelled a national conference on the Constitution organized by his own Council. So Doris Anderson resigned.<i> Inside Broadside</i> republishes a report of the eruption that followed written by activist Kay Macpherson. Her piece is interesting, but it is only one woman's view of events, not journalism. It took a mainstream, ad-driven, controlled-circulation women's magazine, <i>City Woman,</i> and its Editor (and my friend) Dawn MacDonald, to help raise a national hue and cry called the Butterfly Campaign to get women's views proper attention on Parliament Hill. In three weeks flat, an ad hoc group including Macpherson, Linda Ryan Nye, and Marilou McPhedran organized an alternative national constitutional conference in Ottawa. The 1300 self-selected and self-financed attendees who came from across the country, met for two long days in premises supplied first by Ottawa Mayor Marion Dewar and Conservative MP Flora MacDonald. They voted on a list of recommendations, including that the Minister of the Status of Women resign. ( He did not. But Prime Minister Pierre Trudeau eventually replaced him with MP Judy Erola.) Attendees lobbied all political parties on what women wanted to see in the Charter. And it was ad-driven <i>City Woman </i>which, several months later, carried a long and careful piece of real journalism about these events and their aftermath, written not by a participant with only her own part of a big story to tell, but by then journalist Anne Collins. Collins interviewed most of the important actors and was able to lay out what happened, why, and what it might mean.<br /><br /> # # #</span><br />
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ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-29911600390254957342020-03-08T09:30:00.000-04:002020-03-08T10:39:47.727-04:00 Part I: Reflections on the Second Wave: A Feminist Journalist Remembers Herself<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As conspiracy theories flourished about how and why Jeffrey Epstein met his end in a New York prison, and anticipation built over the Harvey Weinstein rape trial, I dipped into two books presenting worm's eye views of the most important revolution of the last two thousand years-- the rise of radical feminism. Now referred to as the Second Wave, the second feminist revolt (the first focused on the right to vote) helped vault women from voiceless, impecunious, cowering semi-slavery to leadership positions throughout the western world. Anyone trying to craft a narrative of the way the Second Wave affected Canada might find it useful to read <i>Feminist Acts: Branching Out Magazine and the Making of Canadian Feminism</i> by Tess Jordan, and <i>Inside Broadside: A Decade of Feminist Journalism </i>edited by Philinda Masters. But be warned. Much is left out, much is plain wrong. In particular, both purvey the false notion that mainstream journalism stood in the way of the Second Wave. In fact, journalists were the movement's leaders, and mainstream publishers and television networks showed why feminism mattered.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>Feminist Acts</i> is a biography of <i>Branching Out </i>which author Tessa Jordan calls "Canada's first national second-wave feminist magazine". It published its preview issue in December 1973 and folded in 1979 when its second full time unpaid editor, Sharon Batt, had to get a job and no one stepped up to take her place. According to Jordan,<i> Branching Out</i> wanted to provide a place for what she calls female culture (stories, poems, art, photographs, essays by women and about women). But contrary to <i>Feminist Acts</i>' subtitle, <i>Branching Out Magazine</i>, with a circulation of 4000, reached very few minds, never mind playing a significant role in "making" Canadian feminism over its seven years of operation in Edmonton. The product of unpaid volunteers and sold on some newsstands across the country, <i>Branching Out</i> offered little that was unavailable in much more widely distributed media. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>Inside Broadside</i> reprints some of what this monthly Toronto-based newspaper, published by a lesbian collective, offered its readers between 1979 and 1989. The selected works are organized thematically, each section set up in a short essay by editor Philinda Masters. Though its subtitle claims <i>Broadside</i> published journalism, it is not journalism as I understand it--carefully checked reporting on matters of public interest. Broadside presented something akin to the citizen journalism circulating now on social media-- advocacy, single point of view reports, opinion pieces, and reviews of cultural offerings, all shaped by political beliefs.<i> Broadside</i> prided itself on being outside what it calls mainstream media which its founders viewed as biased in favour of the misogyny of the day. With a circulation of only 2500, it lived off bits of classified ad revenue, subscription income, donations, government grants, the kindness of contributors and volunteers willing to work hard for no remuneration. This is a source of pride to Philinda Masters but it is also an admission that <i>Broadside </i>could not support the digging that real journalism entails even if it had wanted to do it. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yet that work needed doing. The 1980s were crucial times for Canadian women: we had to fight hard to be properly written into the Canadian Charter of Rights and Freedoms and to be freed from the criminal law on abortion, even as the backlash against Second Wave feminism turned ferocious. And things were worse in the US. The Equal Rights Amendment, outlawing discrimination based on sex, moved so slowly through the ratification process that Viriginia became the 38th and final state necessary to get that job done only last month. Feminists in both Canada and the US were bedeviled by pro-lifers and anti-feminists who insisted women preferred to remain on our knees and should be forced to have children against our will. Even the word feminist (like the word liberal) became a dirty epithet and the vile term feminazi was brandished with pleasure by the loud men of the political Right. By the end of the 1980s the Second Wave had lost momentum and direction. As the Third Wave emerged from it, common cause, the idea that all women suffer from the same social forces in the same way and should therefore help each other as sisters, was abandoned in favour of factions obsessed with class, ethnicity and sexual proclivities.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Neither of these books tells that story well, though <i>Inside Broadside </i>presents slivers of it. Neither is of literary interest either: they display less than sparkling critical writing and story-telling. And yet: they engaged me. Reading them was like plowing through shoe boxes full of the old letters and coffee-stained notes of forgotten but important moments in the Canadian women's movement (and my own life). They shoved me deep into the well of memory, sent me running down to my basement to paw through my own archive of the period, the better to refute or reformulate.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I found myself shouting out loud at certain shared assumptions and assertions. For example: in Philinda Masters' introduction to Inside Broadside she describes the book this way:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">"The pieces in this book are a snapshot of ten years of activism, contemplation, creativity, and reporting on what was in the early days called the women's liberation movement. When the mainstream press caught wind of it, it came to be called 'women's lib,' and we became 'women's libbers.' It was their attempt to trivialize what was becoming an enormously threatening trend. And in case you're snickering at how dismissive and odd this sounds, consider what the movement is called now: #MeToo!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">To see how it all began, how some things change and some things don't change, read on." </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Similarly, according to Jordan in Feminist Acts:</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">"...because of the limited publication opportunities available to women in Canada in the 1970s, for the <i>Branching Out </i>staff, the very publication of artistic and nonfiction content by women was a feminist act." </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">These assertions are nonsense. Masters' description of the mainstream media and its coverage of the women's movement bears no relationship to my own experience with either. And as for the notion that merely publishing women's works was a feminist act: please. Female writers of fiction and nonfiction flourished in all major media during both the 1970s and 1980s.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I was a committed feminist and had been living in a commune with my husband and our friends for four years by the time <i>Branching Out</i> published its first issue. Why a commune? Because feminist theorists had argued persuasively that the nuclear family is a prison for ambitious women and I was an ambitious woman. That same year--1973-- I was hired at <i>Maclean's Magazine</i> as a researcher and soon became an editor. <i>Maclean's</i> Deputy Editor at that time was Christina McCall Newman (later Clarkson) by then acknowledged as one of Canada's most astute writers on national politics. Erna Paris, who would become known later for her book on the Holocaust in France and another on the International Criminal Court, was a colleague. The writers I worked with at <i>Maclean's</i> were fearless and accomplished journalists such as: Heather Robertson, Myrna Kostash, June Callwood, Marci McDonald, Dawn MacDonald. I left <i>Maclean's</i> to freelance and for the next thirty years wrote for most of the other leading Canadian magazines. The only one I didn't write for was <i>Chatelaine</i> ( though I was featured there in a Q and A on radical feminism in 1969). In all that time, the only story dealing with Second Wave issues that I was unable to place was a story about the Pill as the largest, uncontrolled experiment ever conducted in medicine. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Contrary to Masters, the phrase "women's liberation" was not imposed on feminist women by misogynist reporters out to mock us, but adapted for use by feminist writers from the liberationist/anti-colonialist literature of the 1950s and early 1960s. And the mainstream press didn't catch "wind" of women's lib: this makes it sound as if feminists, working away in secret, were exposed to the world by reporters seeking to shut us down. In fact, the major works of Second Wave feminist writers were published by leading houses (like William Morrow, W.W. Norton, Random House), as well as by major newspapers and national magazines, especially the women's magazines so disdained by the founders of <i>Branching Out</i> and <i>Broadside </i>for carrying ads for beauty products, clothes, and housewares. <i>Ms. Magazine</i> was launched in 1971 as an inclusion (to gauge reader interest) in the very popular, style conscious, and ad rich <i>New York</i> magazine, whose editors had been publishing leading feminist writers for years. The Second Wave changed minds and laws because so many of its thinkers were either mainstream journalists themselves, or worked very hard to get the attention of the press, and succeeded. You don't make change by hiding your ideas in the basement.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And <i>Inside Broadside's</i> pieces do not deal with how Second Wave feminism began. The Second Wave was launched thirty years before Broadside's first issue with the publication of Simone de Beauvoir's <i>The Second Sex.</i> In this two volume work, de Beauvoir, by then a renowned existentialist philosopher as well as an editor/publisher of leftist journals in France, laid out the methods and means by which constricting, stultifying, imprisoning gender roles are imposed in patriarchal societies. It is the Ur text of the Second Wave, and it was hugely popular, selling 22,000 copies in its first week. When it was published in English translation in 1953, it was widely read and it greatly influenced Betty Friedan who published her own national bestseller, <i>The Feminine Mystique,</i> ten years later. By then Friedan, formally trained as a psychologist, was a well known writer, having done stories about these issues for leading magazines and newspapers.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I read de Beauvoir, and everything I could find about her, when I was 17 or 18. She was the first female philosopher I'd heard of and I wanted to be one just like her. In <i>The Second Sex</i> she lays out the various ways in which the nuclear family, political and economic structures, religious beliefs and mythologies, combine to reinforce the suppression of women, to make us conspire in our own subjugation. It was brilliant, insightful, and wildly ambitious. <i>The Feminine Mystique</i> was a book of lesser social and historical scope which aimed more at institutional than cultural change. But Friedan wrapped her hands around what she called The Problem With No Name--the dissatisfaction experienced by so many highly educated women, like her, who, after World War II, found themselves relegated through marriage and motherhood to the socially enforced role of perpetual helpmate.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Friedan's broadside kicked off a geyser of Second Wave organizing and publishing in the US. Though author Susan Brownmiller would later call Friedan hopelessly bourgeois, Friedan's success led major publishers to bring out Kate Millett's <i>Sexual Politics,</i> Shulamith Firestone's <i>The Dialectic of Sex</i>, Germaine Greer's <i>The Female Eunuch</i>, and later, Susan Brownmiller's <i>Against Our Will: Men, Women and Rape</i>. These works were avidly read and relied upon by the women who organized Second Wave groups in the US, UK, France, Europe, and Canada over the next decade. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"># # #</span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-16871224615077228752018-08-17T09:00:00.000-04:002018-08-17T09:00:02.790-04:00Field Notes from a Medicare Disaster: Epilogue<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicFA_ABjXydWlQBvl5nPD6ttuv3x1xW7puYQxo-YrOV8qi1Wpj7Yr63qdCIuanAVjvAy8PehKlQM54AVj1jLctUn9PpU0_YNdJ_CD4pJDMHVynzKm0Lsxqd8fJYLiJ04w6tMT1Sd31b3eC/s1600/300px-The_Persistence_of_Memory.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="221" data-original-width="300" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicFA_ABjXydWlQBvl5nPD6ttuv3x1xW7puYQxo-YrOV8qi1Wpj7Yr63qdCIuanAVjvAy8PehKlQM54AVj1jLctUn9PpU0_YNdJ_CD4pJDMHVynzKm0Lsxqd8fJYLiJ04w6tMT1Sd31b3eC/s400/300px-The_Persistence_of_Memory.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Persistance of Memory, Salvador Dali</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And so there we were, home at last, improving.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He still had no neurologist overseeing his care, but we were beginning to think that might be a benefit. I had kept track of the opinions of the neurologists he'd consulted. By the time my guy came home, he'd been seen by four--and that didn't include the neurosurgeon and the doctor on the neuro ward at Providence who isn't a neurologist but might as well be. By my count, the neurologists were evenly split as to whether or not he had a Parkinson's-like syndrome. Two were for, two were against.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">To recap: the first neurologist, consulted about his weird gait and what neurologists call postural instability, had ruled out Parkinson's after examining him carefully and ordering a CT scan. He'd offered no diagnosis, just said we'll see what's what after a while. But as we waited for a while to come to pass, my guy fell at the cottage and suffered a serious concussion. The physicians who attended him at St. Michael's thought he'd fallen due to a drop in blood pressure after he sat in one place for too long, got up too fast, and boom, passed out, going down like a stone. The gait issues were not considered troubling. However, 18 months later, as these and other symptoms got worse, he was examined by a neurosurgeon at St. Mike's. On the basis of that CT scan and a physical exam, the neurosurgeon thought he might have normal pressure hydrocephalus but that could not be confirmed or ruled out without doing an MRI and possibly a spinal tap test. Two months later, another fall and another concussion brought him to the attention of the third neurologist, a neurology resident at St. Mike's. After doing the MRI, taking a careful history, doing a very thorough physical examination, and a Montreal Cognitive Assessment test, this charming young man said hey, you've got Parkinsonian syndrome! A senior neurologist (with little interest in Parkinson's, or us) concurred after my guy seemed to respond well to Sinamet which apparently meant that his brain was not producing enough dopamine. So: Sinamet was prescribed and my guy took ever increasing doses for almost two years during which he quickly, quickly declined. After a bout of flu/pneumonia, and a thoroughly miserable month at St. Mike's where no neurologist saw him because, according to the internal medicine resident, too many cooks spoil the broth, he spent another month at a rehab hospital called Providence. There he began to slough off the dire effects of the blood pressure drug given to him at St.Mike's for high blood pressure-- caused by the Sinamet. While he was still undergoing rehab at Providence, he was examined by a fourth neurologist at Michael Garron Hospital. Number four, contrary to number three and number two, said "I don't think you have Parkinson's or Parkinsonian syndrome. " He proposed taking the Sinamet away to see what might result. Without Sinamet, my guy immediately began to get better.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Just before the second Sinamet test, I had managed, by virtue of begging, to get my guy moved to the top of the waiting list for one of the best movement disorder neurologists in the country. Three weeks after he came home, off we went to see her.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The movement disorder clinic is located at Baycrest, which is a hospital, a rehab center, an assisted living facility, as well as a research organization. It is due north from where we live, not all the way to North Bay, but well on its way. To get there, I had to get my guy onto the small stairlift installed on a short flight of steps from the main floor to the side door which opens flush with our driveway. From there, I had to get him into a wheelchair and roll him to the curb so he, in his wheelchair, could be pushed into a special wheelchair taxi. Being a worrier, I'd made my guy practice getting on and off that short stairlift to make sure he could actually do it. It was a much tighter squeeze than the big stairlift custom-made to fit the staircase to our second floor. He had to back on to this one which seemed to set off waves of anxiety because he could not actually see the chair behind him and he had to trust me when I said keep going, you won't fall. I'd tested it myself and discovered I'd have to hold his feet on the foot platform as the chair descended on its slide, because he couldn't. And if he didn't, they would jam against the wall.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">To get this whole operation under way, I rolled his empty wheelchair out the back door, bumped it down the back steps and pushed it along the driveway to the side door. Then I ran back up the back steps, through the back door, and helped him position himself on the stairlift chair. Then I ran out the back door again, down the back stairs and over to the side door so I could hold his feet in the right position as the stairlift carried him down to the landing. Once there, he had to stand up, and, using handholds, walk out the door to the wheelchair. Piece of cake, right?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The morning of the appointment, we got it done, but it took too long. We had to send the first wheelchair taxi away and call another after we'd made it to the curb. The whole business took us about twenty minutes. We were sure we'd be late for the appointment we'd been waiting for for so long. Would they kick us out?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We got to Baycrest only a few minutes late, found our way to the clinic, a nice, modern space with easy access for people in wheelchairs. It had a small gym and a few offices. We filled out the usual forms and waited until the neurology resident, a man in his thirties from Mexico, came to get us. He was very pleasant and friendly but with a very thick accent in English which made communication a little awkward: we had to prune our speech of idioms.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He said he would do the preliminary examination for his boss. It was thorough and identical to the one done by the neurologist at Michael Garron and the resident at St. Mike's. Then we unfurled the history, or at least I did because my guy was, by this point, so tired he was zoning out. The young neurology resident seemed to find it significant that my guy kept asking me to provide the facts instead of sharing them himself. He fixed on certain facts with the ferocity of a terrier. He did not appear to grasp that this was my guy's first day outside the house since his return from Providence, and was just beginning to recuperate from two years of the wrong medication.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He hauled out the Montreal Cognitive Assessment test. I could have done the test myself in my sleep, but I'm healthy. My guy was having trouble staying awake and he did not do well. He didn't appear to be able to think his way through the connect-the-letters puzzle (you must spot the pattern and then mimic it) and he had trouble remembering the list of words which he was instructed to learn and repeat five minutes later. (I remembered them all from the last time he did this test: apparently they don't bother to vary the test details, assuming that those who are asked to take it probably have memory issues, so they won't be able to remember the answers if asked to take it again). My guy also did a bad job of drawing the clock face. It looked as if it was melting. However, in what should have been a clue to the young resident that this test was not terribly meaningful, when he was shown images of animals and objects and asked to name them, he said "dromedary" to identify the single-humped camel depicted on the sheet.The neurology resident didn't know what a" dromedary" is, so my guy explained. I added that he had produced and directed hundreds of nature television shows, reads general science publications ferociously, became a serial inventor for which he had just been nominated as a finalist for a prestigious international award. The resident didn't really want to know about this intellectual history (oh, high functioning, is all he said). He was only interested in now. Did he have hallucinations now, did he act out his dreams while sleeping now? Did he do the banking now? No, and no, and no, my guy said. I could see the resident's eyes go wide, as if to say: ah hah! At the end of this examination I realized I was angry. Why? I knew what he was going to say before he said it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"You're in serious trouble," he said to my guy, which made me want to kick him.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"I can tell you right now," he continued as he gathered up his notes with something like glee on his face, " you have Parkinsonian syndrome!"</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That made it three neurologists in favor, to two against. But notably, two of the three in favor were young neurology residents and the third, the senior neurologist, apparently didn't know that eating dairy products interferes with the uptake of Sinamet which has been known for thirty years.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The resident disappeared to lay out his findings for his boss. We waited for forty minutes before we were called in. My guy was now not only tired but hungry.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The senior neurologist, his boss, was a charming and intelligent woman who asked interesting questions. She apologized for keeping us waiting and explained that they had been having quite a debate about her resident's diagnosis. She did her own physical. I told her I had questions as to why no one wanted to consider that his symptoms might be due to traumatic brain injury or deranged populations of gut bacteria. She told me to please hold my questions until she had asked all of hers, but to give her her due, she did come back to them after we recounted the history one more time. She acknowledged there is interesting work on the relationship between gut and brain. As to whether his symptoms were the result of traumatic brain injury, she thought it was possible but there is not much one can do for that. She was interested to hear of his improvement after the Sinamet was stopped. She was interested in the Montreal Cognitive Assessment test results, and wondered if we would mind going to see a colleague of hers who might be better able to figure out what was going on in that regard. She said she'd have her staff set up that appointment. She asked how much help we were getting from the LIHN and when I said 10 hours a week, she said she would try to get us more. (She did try, but failed.) She then had her assistant make a follow up appointment for November, many months away. We had thought we would work with her clinic's physiotherapists in the interim. We made an appointment for the following week but cancelled it when we realized how hard it was for my guy to get out of the house. Besides, the LIHN physiotherapist had agreed to come and do an assessment: when he arrived, he decided he would work with my guy himself rather than send in a junior. He came to the house for six sessions and was very helpful. We switched to a private physiotherapist after that, a man who had worked with my guy before he got the flu and agreed to come to the house.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When he came the first time and we told him what had been going on, he said: "I always knew he didn't have Parkinson's, or any syndrome like it, no way."</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">One of the nurses at Providence had said the same thing.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">What did they see that the neurologists didn't?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Improvement continued, slowly, slowly. At first it was two steps forward, one back. Then bad days came every fourth day, then every fifth, sixth, seventh and so on. We were pretty sure this was due to daily physio exercises, careful diet, 12 hours sleep a night, vitamins, wild salmon oil, and no medications. My guy kept saying he felt as if he was healing.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">In early May, a few weeks after our visit to Baycrest, we got a letter from the office of a neurologist at Sunnybrook Hospital. My guy was offered an appointment for mid July, 2019.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I phoned Baycrest and left a message for the movement disorder clinic's nurse. I said: July, 2019 is 16 months away. My guy is 75. Who knows if he'll even be with us then?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Another appointment letter soon followed, this time from the office of another neurologist at Baycrest, the same man, as it turns out, who is the friend of the friend of my cousin in Israel, the one who said he couldn't get his own patients moved to the top of the movement disorder clinic's wait list, you'll have to wait your turn. His office offered my guy an appointment in June, 2019, 15 months away. I looked up his publications. He seems to be interested in the clock face portion of the cognitive assessment test. I frankly did not see how that could address my guy's movement problems and no one at the clinic called back to explain the connection.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But that made me wonder: did my guy's sense that he was healing include his capacity to draw clocks? I asked him to make one saying 2:30. He drew a near perfect circle, put the numbers in the right places. The hands were drawn the same length, and the numbers were not laid out with the precision he always deployed before he became ill, but it was clearly a normal clock, not a Salvador Dali version like the last time. I asked him to do the finger articulation exercise the neurologists had asked him to do when they examined him. The left hand was fine, the right still slow, but he could make each finger move appropriately. I asked him to stick out his tongue to see if it quivered, a test done by the speech language pathologist when looking for problems associated with Parkinson's. No quiver. The last time I'd asked him to try it, it had quivered.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We got a call from Baycrest saying that someone had cancelled, my guy could have an appointment with the clock face neurologist in a week instead of having to wait until June, 2019.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I asked him if he wanted to go.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Forget it, he said.</span></span><br />
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ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com4tag:blogger.com,1999:blog-8256131156058173921.post-35597073281231645632018-08-10T09:00:00.000-04:002018-08-17T11:08:22.425-04:00Field Notes from a Medicare Disaster: Sixteen<br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD_NU9o2HfYiWUCP5M-nbr5clOV3fSIsZtzigfsVPOKRmF6mBGx4c16TKU-H0xeFLGrAJ-hJz-FT_xz4hAorxQqOfu_-gP2kfS2HhGu3Z3_jaKH9H26o-kmPtj1II4RwWv1cZ7IZCRbemx/s1600/hands-981400_640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="426" data-original-width="640" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD_NU9o2HfYiWUCP5M-nbr5clOV3fSIsZtzigfsVPOKRmF6mBGx4c16TKU-H0xeFLGrAJ-hJz-FT_xz4hAorxQqOfu_-gP2kfS2HhGu3Z3_jaKH9H26o-kmPtj1II4RwWv1cZ7IZCRbemx/s400/hands-981400_640.jpg" width="400" /></a></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The day he came home is a blur. Yet I have one strong recollection--like an overhead shot taken from a room above Providence's main door-- of me standing outside at the curb in the brisk morning air as they loaded him on a gurney into a medical transport van. There is a bright red jacket in this image yet I am not certain whether he wore it or I did. This obliteration of boundaries happens all the time when one has been part of a couple for more than 50 years. His body becomes yours, his memories are events that happened to you, and vice versa. I think I was elated but maybe that emotion was his. It's more in keeping with his nature. It's more likely I was anxious.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">They bumped him in a transfer chair up the front steps to the house and into the front hall. They also brought home his wheelchair while I brought the metal walker I'd purchased for him at Providence in our car. They helped him get to the stairlift and he rode it up to the second floor. It was hard for him to get settled on its chair, hard to put his feet in the right place on the fold down platform, hard to learn how to use the controller that sends the chair up or down, hard to change the chair's orientation, to make the seat-belt work. It was even harder to remember how to turn the damn thing on after we inadvertently turned it off. With each mistake, I panicked. What if I couldn't get the stairlift going again? He'd be stranded. I probably phoned the company that installed it five times over the next three days. Yet the stairlift worked well, it was me who kept screwing up. And the bathroom was fine too, all the handholds were exactly where they needed to be, there was plenty of room for a big man using a walker.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He'd been away for two and a half months. In the US, if he'd been ill in hospital that long without sufficient insurance we'd be bankrupt. Give thanks for where you had the good sense to be born, I wanted to shout. Dad, you were right but also wrong.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> My guy seemed pleased to be home.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The first night, I didn't sleep much, listening in case he needed help. And he did.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next morning, the first of a series of personal support workers arrived at about 8 in the morning, sent by the Local Integrated Health Network's contracted supplier of home care. A worker was supposed to come every morning for the next week to help get him up and dressed. He was entitled to one hour of care (which in real time as opposed to care time is no more than 45 minutes because 15 minutes of each hour is travel time). During that week, my guy would also be assessed by senior coordinators who would determine his actual allotment of publicly-funded care and the duration of same. It didn't matter what some doctor or hospital physiotherapist had to say about his needs, the LIHN makes its own decisions. He was in no condition to be left alone in the house, yet in that first schedule no time was allotted for me to go out for simple things like groceries.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The city is divided into regions each served by a single contracted supplier of public home care--they employ RNs, practical nurses, physiotherapists, occupational therapists, personal support workers. They are supervised by the district LIHN's care coordinators. You'd better get on well with them unless you have sufficient funds to hire private care. (The cost of private help is about $100 for a minimum of four hours. Personal service workers do not get paid $25 an hour, though they clearly deserve it. Their cut of the private take is just a tad higher than minimum wage.) I'd had a few run ins with the care coordinators of the home care supplier in my mother's district. There were many, many failures to arrive on time, and failures to assist her private caregiver as required by their own determination of her needs. I'd become used to dealing with that sort of trouble: I had learned to keep asking for the supervisor, and then the supervisor of the supervisor, going all the way up the food chain until I got to the CEO. This is not easy. Staff members don't want to attract the attention of the CEO when a complaint is involved. Yet CEO's of organizations delivering publicly funded home care generally like to keep their clients happy, and are determined to prevent them from running to the LIHN or the Ministry of Health to complain. Journalists are good at getting through the bureaucratic spread-the-responsibility-so-no-one has-to-fix-anything evasive maneuvers that result. So it's those not so good at raising a ruckus who suffer when things go wrong. As they did, and right from the start.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The LIHN's assessment personnel had been to see my guy after his previous hospitalizations, had ordered physiotherapy for a few weeks after the last concussion. They had been notified by Providence to reopen his files and had made appointments with me to come to see him again. I remembered the occupational therapist very well, a cheerful, bright woman very determined to work the system as hard as possible to get her clients as much help as possible. The LIHN's overall care coordinator was not so cheerful, more soulful, but very able and equally determined to help as best she could. The level of help we would get would depend on their professional judgement leavened by the available budget, a budget which has barely moved over the last ten years in spite of a 40% growth in demand for help in the last five years. That budget had already been stretched to the break point by late spring because 2017/2018 was a bad flu season. Did he need physio? I thought that was obvious. At Providence they thought it was obvious too. Our doctor asked for it. Yet the LIHN could refuse it. Did he need a specially measured walker, a specially designed wheelchair? Did he need a wheelchair at all? The wheelchair became a matter of contention. If he was able to walk a little and wasn't sitting in it all day, why did he need one specially designed to fit his body? The need to use it outside didn't matter. He could have an ordinary wheelchair for that. The one he'd been sent home with was really expensive.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">In my area, public home care is provided by a non profit affiliated with a downtown teaching hospital. In the daily forty-five minute period actually allotted to him, the personal support worker assigned to him by that organization was expected to help him get out of bed, get to the bathroom and to the shower bench where he would wash, shave, and dress, then help him get to wherever he was having his breakfast. They were also tasked to make the bed, carry down the dirty laundry or any garbage. I only repeat what their orders said: I know because I was given a copy.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But that's not what happened.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The first morning a tiny woman knocked on the door. She was late yet actually on time, as is explained on the non profit's voice message system when you call in to find out where the hell your worker is. On time means 15 minutes on either side of the appointed hour. I had to give her a short lecture on my guy's condition, because she knew nothing about him when she arrived, and to explain what she could expect given his unnamed disorder, how to use the new shower without getting soaked herself, where his clothes were, and his shaving equipment. She had arrived without plastic shoe protectors so I had to tell her to take her shoes off to use the shower. She didn't like that. She looked at my guy with something akin to fear. She said she did not shave people: she said she was not allowed to. So after I showered him, with her looking on, I shaved him too. She helped him get dressed, took a poor stab at the bed-making which I decided then and there I would do myself, left the laundry and the garbage disposal to me, and went on to her next client. I got on the phone and explained to the supplier's care coordinator that we were going to need a man or woman big enough to help my guy, that the small woman they had sent had quite obviously been afraid, and perhaps did not have the necessary skills to deal with a big man with movement issues on a damp floor.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The young care coordinator, a woman who spoke extremely quickly on her voice mail message, as if seriously pressed for time yet also sad and tired, said there weren't many men available, that would be a problem.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I explained that they'd have to dig up someone big enough somewhere, or there would be an accident. I explained I had ended up doing most of the showering. And the shaving.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next day, they sent a man. Again, I had to explain my guy's condition, had to explain about his slow movements, had to make sure the worker learned how to use the shower without getting soaked himself. This worker also said he was not allowed to shave anyone. So I did it. And I made the bed, and took down the laundry, and the garbage, and brought up the breakfast.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next day again someone new arrived--a woman. Once again, I had to train her in my guy's issues, to make sure he got safely into the shower, to make sure she learned how to use it without getting soaked. Again, this person said she was not allowed to shave him. So I did it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By the fourth day I was beginning to wonder why they sent anyone at all since I was either doing the work or supervising it. While they stood behind him watching him struggle to the bathroom, I was making the bed, fishing out his clothes, then running to the shower whenever the worker called for help. Which was frequent.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">On the fifth day, no one came. When I called in, I was told the worker, yet another new one, was going to be late, very late, more than an hour late. I told the care coordinator to tell that worker not to bother, I wasn't going to leave him lying in bed that long. That was the morning I discovered that I could do everything that needed doing, including showering him myself and that he preferred that I do it. And why wouldn't he? Four mornings in a row he'd had to stand stark naked in front of total strangers as they washed him. My guy is not shy. But many people are. (If it had been me, I would have said I don't care how dangerous it is I'm going to shower myself, you wait outside.) There was no time for him to get to know these people, unlike at Providence where the same small group of nurses helped him every day. I wondered: how upset would a person with Alzheimer's or some other form of dementia become when faced every day with strangers yanking them out of bed and pulling their clothes off?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And yet, looked at from the worker's point of view, they had more to complain about. Every new client was a steep learning curve. The fact that they managed to address each person's needs at all was a testament to their adaptability. Almost all were new immigrants, most with very different styles of life in their former countries. In this job, they were poorly paid members of the precariat. They were under constant stress to get on to the next client waiting in the queue. They had to arrive on time, leave on time, get to the next household on time and a lot of them did it for 10 hours a day, six days a week, if their employer asked them to. This would be barely manageable even if all the clients were mobile and didn't hold them up. One slow poke would blow the whole schedule. Toronto traffic is so bad that getting from one point to another on time is more than difficult. In small communities up north, the geographic range covered by personal service workers can be very large. My guy is a terrible challenge to this system. A movement disorder means he can be extremely slow getting from bed to shower and out again. Rushing will end in disaster. Forty-five minutes is not time enough to get it all done. If my guy was having a slow morning, and he has plenty of slow mornings, though they tried to conceal it most workers became agitated, keeping careful eye on their watches, which bothered him. Being a nice guy, he tried to send them on their way early, even if they weren't done.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That morning, I was tempted to tell the LIHN to forget sending workers, we'll manage ourselves. Yet I didn't. After only a week of being on call 24 hours a day, I knew I would buckle under the strain without help. Not only was I doing most of the work of caring for him, I was doing all the meals, the clean ups, the laundry, helping with his business, doing my own. And somehow I had to get out of the house to get food.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So I kept my mouth shut.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The two senior care coordinators came separately to see him. They had both assessed my guy before. They were amazed that his parkinsonian syndrome diagnosis had been chucked out, that he was no longer on any medication, that without the Sinamet he was actually improving. This never happens to my clients, cried the occupational therapist, this is thrilling! The other coordinator was so happy to see him doing better without medication that she promised to speak to the lead physiotherapist and beg him to send help. But she also warned me. She said: you know the people they'll send are fresh out of school and won't have much experience with neurodegenerative disorders, but I'll try to get it done. And she did. She also ordered 10 hours a week of care for the next five months, including three hours on Friday afternoons so I could do grocery shopping. But none of that dealt with the real problem, the never-ending turnover of workers, the daily need to train a new person.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The film crew arrived and shot their film ( he performed almost as well as he used to when he was an on-camera public affairs TV reporter/director years ago). By then, the junior care coordinator had sent in a new personal support worker each day for eight straight days. After the film crew went home, I got on the phone and raised hell.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I know what you're thinking: how dare you complain about a publicly funded system that cares for a person in hospital, and then, after the patient is sent home, provides trained people with real skills to come to the door to make sure that patient is properly washed, dressed, fed and any wounds attended to. It is a testament to this society's determination to take care of everybody that we have such a system at all.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But even the most well-meaning systems can break down, especially when starved of funds year after year, as the home care system has been. And because it is starved, people who might have managed well at home if they'd been attended to sufficiently, end up back in an acute care hospital or in longterm care both of which cost a hell of a lot more. The home care system was invented to take the pressure off both, not to be part of a revolving door problem in which sick people are sent home from hospital too early and either end up right back on a ward, or permanently warehoused in long term care places so understaffed that someone like Wettlaufer can go undetected for years.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When I picked up the phone to complain, it wasn't just about helping him, it was about saving me. I had finally understood that if this pace kept up, and I got sick from overwork and lack of sleep, we would be in a disastrous situation.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I forced myself up the hierarchy of the home care provider, starting with the junior care coordinator who got the brunt of my rage, a blast sufficient to make her cry which made me ashamed. I was passed to a supervisor, and from there to another, and with each handover I kept saying: are you the CEO? No? That's who I must speak with. Finally I got a call back from a young man. He asked what I was calling about. I said: are you the CEO? No, he said, he was the CEO's assistant. I want to speak to the CEO not to you, I said. I need to speak to the person responsible for this system. I am a journalist and this experience has been so bad that I am going to have to write about it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Lo and behold--the CEO herself called me back the next day.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">After I explained what we'd been dealing with---eight straight days of new faces, eight straight days of me training each caregiver, eight days of no phone calls when the caregiver was going to be late, but with me having to call in to find out if someone was coming, eight days of carrying down the laundry, the garbage, making the bed, supervising the showering and doing the shaving-- I said I had had enough. I said this was a completely incompetent way to manage a home care system and I wasn't going to stand for it. And I was going to write about it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She apologized. She told me stories of what happened when her own mother needed care, how she herself, for many years an RN, had been helpless to get the help she knew her mother needed. She sent me documents demonstrating plateaued funding in the face of the growth of demand, lobbyist papers arguing for more investment in home care, as opposed to hospital care. One pointed out that there might be a strike of personal care workers in Ontario this fall-- because personal support workers are getting unionized and a first collective agreement is being negotiated. Inevitably, and appropriately, labour costs were going to go up.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She promised that her organization would try to do better, starting with a meeting of coordinators at our house. An RN would come along with them.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When they arrived, they trooped up to my guy's office. At first they were defensive as I told them what had been going on. They weren't happy to hear it. When I told them I didn't blame them, I just wanted to know how it could be fixed, they promised changes would be made, that my guy would be assigned the same workers who would be instructed to call when they were going to be late or early, who would be instructed to provide the services required. He would not have to face strangers every morning anymore, and I would not need to instruct on a daily basis.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I said fine, but I'm still going to write about this.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I could see they were actually pleased by that. Why? Because they don't like being unable to deliver, they don't like having to say no to the provision of care they believe will prevent their clients from relapsing, they don't like having to ration what they know is essential. They wanted someone on the outside to shake the politicians' cages, to get things moving, to raise Cain, to get more money from the public purse spent where it's really needed, not wasted on some shiny atrium with a shiny donor plaque on a shiny new hospital filled to the brim with patients but chronically understaffed. The medical system is a <i>human </i>endeavor. Machines are well and good, but without sufficient humans to manage and deliver care, they are useless.The people who provide care deserve to be properly paid and to work reasonable hours. They should not have to struggle through terrible schedules in order to make a living.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">In the end, I found myself thinking the only reason this system works at all is because of the determination of the individual caregivers who try to make a go of it no matter what.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Unfortunately, and yet predictably (my Dad did predict it and he was not alone) no matter what is what we've got.</span></span><br />
<br />ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com2tag:blogger.com,1999:blog-8256131156058173921.post-56109536094566611052018-08-03T08:00:00.000-04:002018-08-23T10:07:39.695-04:00Field Notes from a Medicare Disaster: Fifteen<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxgO8OL6HE351d6Oq7tYbmy1Pg4IEucSl2ONnUPz3iFh3Ixy3yTvN0q9_yX8G0rqzYR759nqq7sPyhvXAVvOW2l_1KJxeTY1xYiPtWx9Yuc5lrzQu6FqTG8LmFual5TeDA-eIEnuFNuTwR/s1600/blur-box-capsules-593451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="999" data-original-width="1600" height="248" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxgO8OL6HE351d6Oq7tYbmy1Pg4IEucSl2ONnUPz3iFh3Ixy3yTvN0q9_yX8G0rqzYR759nqq7sPyhvXAVvOW2l_1KJxeTY1xYiPtWx9Yuc5lrzQu6FqTG8LmFual5TeDA-eIEnuFNuTwR/s400/blur-box-capsules-593451.jpg" width="400" /></a></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The lead physiotherapist didn't return from her ten day vacation until after the Sinamet withdrawal experiment began. By then, my guy was walking again. She was, to say the least, surprised. At first, he was only able to take a few steps while someone (me) scurried behind him with a wheelchair in case he lost his balance. Then, in a triumph of the will, he made it on his own two feet from his bedside to the hall, about twenty steps. I could hear his feet as they slid across the floor, I could see his knees buckle and wobble, and he was horribly slow, but he did it. A few days later, he was able to walk to the door and go a few meters down the hall. His gait was still awful, there were many freezing moments, but from time to time, to my amazement, his feet hit the ground heel first almost as they used to before his problems began.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">This was spectacular improvement. The neurologist at Michael Garron and the doctor at Providence had been right. He didn't have Parkinson's or Parkinsonian syndrome. He had something, but not that. He was back on the path to improvement through hard work. I was thrilled.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Yet every now and again I was also overcome by fury.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I was furious at myself. I couldn't believe I had been so blind to the obvious for so long. It was now clear that his rapid decline coincided with the introduction of Sinamet. Increasing the dosage to "help" him had only made him worse. It had gone from three pills a day to a minimum of five, more when required, in less than 18 months. The more I gave him, the more his decline picked up speed.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I cursed myself as an idiot. Why hadn't I connected the decline to the drug?</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I was also furious at the charming young neurology resident, the one we had liked so much, who had clearly made a diagnostic error, yet somehow convinced the senior staff on the ward that he was right, and convinced the neurosurgeon to back off doing a spinal tap to test for normal pressure hydrocephalus. He had done this in spite of real images of my guy's brain which had led the neurosurgeon to suggest that test. By contrast, he had relied for his opinion on a combination of physical exam, a paper test, and intuition--in other words, not hard evidence, more like educated guesswork. Why had the senior neurologist in charge of my guy's care not been alarmed at the speed with which his condition worsened? On reflection, it seemed obvious that it wasn't just that his interest lay in epilepsy and not in parkinsonism. It was likely because leading minds at St. Mike's, his among them, had leaped to the wrong diagnosis and then felt a need to defend it. And so he failed to consider new information in any other light. My guy's need for more and more Sinamet to get less and less benefit was construed as par for the course. Sinamet is not a cure and eventually fails to work. So what if it failed to work quickly? He'd said the prognosis was " worse." This was what worse looked like.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And the fact is I too got stuck in the parkinsonian frame. Having been given a diagnosis, I shoved everything I knew about his medical history into that overly capacious narrative. It all fit. Though my guy's gait symptoms appeared after he turned 70, which is considered late, those who get Parkinson's late do tend to decline more quickly. Several groups have shown that it may be an unhealthy balance among the microbial populations in the gut that causes Parkinson's. Mice can be made to exhibit parkinsonism by deliberately altering their microbial populations. Most people who develop Parkinson's, usually between the ages of 50 and 60, have had prior gut issues. My guy had had prior gut issues. One Australian scientist is certain that Parkinson's is induced by an H. pylori infection, the same bacteria known to cause stomach ulcers, and that this can be cured with a complex course of antibiotics. My guy had never had an H. pylori infection, but he'd had all kinds of other ones having to do with his teeth, and another recent paper proposed that Parkinson's is the result of infection by an unknown pathogen which makes its way to the brain through the vagus nerve. Researchers at Aarhus University did a survey of all patients in Denmark who had had their vagus nerves severed between 1977 and 1995. (This procedure was once a relatively common treatment for stomach ulcers.) Few who had their vagus nerves completely severed developed Parkinson's, though it is expected to occur in one person per thousand. Another large group of patients whose vagus nerves were only partially severed were much less protected from Parkinson's. (<span style="font-family: "times" , "times new roman" , serif;">See: <span style="background-color: white; color: #0a0a0a; display: inline; float: none; font-style: normal; font-weight: 400; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Vagotomy and subsequent risk of Parkinson’s disease” by Elisabeth Svensson PhD, Erzsébet Horváth-Puhó PhD, Reimar W Thomsen PhD, Jens Christian Djurhuus DMSc, Lars Pedersen PhD, Per Borghammer DMSc and Henrik Toft Sørensen DMSc in </span><i style="background-color: white; box-sizing: border-box; color: #0a0a0a; font-style: italic; font-weight: 400; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Annals of Neurology</i><span style="background-color: white; color: #0a0a0a; display: inline; float: none; font-style: normal; font-weight: 400; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">. Published online June 2015 doi:10.1002/ana.24448</span>.</span>) It used to be considered unlikely that pathogens would find a path to the brain: the immune system was thought not to extend its reach beyond the blood brain barrier because that barrier was mostly sufficient to the task. But that view is changing under the pressure of new facts. As the cover story of the August 2018 issue of <i>Scientific American </i>shows, there is clear evidence that the brain and the immune system are completely intertwined, that pathogens do find their way to the brain where the immune system goes to work to take them out. Even my guy's migraines in middle life fit the parkinsonism grab bag, not that anyone asked him if he'd ever had them. In his forties, he was often laid low by migraines so severe he threw up. Over the last six years, several epidemiological studies have shown a strong association between mid life migraines and late onset parkinsonism. The first such study published in 2012 was done on an Icelandic population. My guy is of Icelandic heritage on his mother's side.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And yet. There was a simpler explanation for his symptoms. While medicine is more art than science, it is nevertheless useful to apply to diagnoses that great science rule of thumb called Occam's razor-- the simplest explanation is probably the best. He'd had his bell rung several times when playing hockey and football in his youth, and he had had two concussions in the last two years. Traumatic brain injuries could well have caused all the symptoms he displayed.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">If my Dad had been around he would have been suspicious of the diagnosis from the start. He would have said get a second opinion from someone who has treated a lot more cases of Parkinson's than a young neurology resident. Of course in my Dad's day, that second opinion would have happened in the hospital. In his day, hospital patients' conditions were considered weekly by students and senior staff who walked the wards together in a process called rounds. About once a week, doctors and nurses and students would go from one patient to another, reviewing each file, talking to the patients and questioning each other as to diagnosis, treatment, and prognosis. Such debate allowed some mistakes to be caught and corrected. But nowadays, at least in Toronto, not all teaching hospitals have formal rounds, or so I was told at Providence. Why not? Too many patients, too little time.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Before we went to the appointment with the neurologist at Michael Garron who threw the diagnosis of parkinsonian syndrome out, I had asked a cousin in Israel to ask a Canadian/Israeli gerontologist friend of hers if he had any <i>protectzia</i> at Baycrest that could help my guy get in there faster. <i>Protectzia</i> is a Hebrew word for exactly what it sounds like, a form of protection from the dead hand of bureaucracy. Israelis trade in personal contacts and favors to get to the head of the line.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Her friend asked a colleague/friend of his on staff at Baycrest (another neurologist) if he could help. But the word came back that the colleague/friend couldn't push his own patients to the top of that clinic's line either. We'd just have to wait like everybody else. This is both the upside and downside of being Canadian. We believe in fairness. We frown on queue jumpers. On the other hand, he'd been waiting for the clinic to let him in for almost two years.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So, in despair, I had decided to beg. I had called the clinic. A lovely, kind woman took my call. I explained what had happened since the referral was first sent, how my guy had had another fall and another concussion, how he had then been struck down in January by the flu, endured a near death experience in a major teaching hospital, was still, after more than a month in rehab, barely functional. We had been dealing with precipitous decline for almost two years with very little help. Please, can you help! I said.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The woman told me he was number 10 on the clinic waiting list, but she would try to move him up. In any case, he would probably get an appointment some time in June.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She called me back a week after the Sinamet was withdrawn. My guy could have an appointment at the end of April if I could find a way to get him there.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I had to tell her that everything was now in flux: the neurologist at Michael Garron had disputed the diagnosis and the Sinamet experiment had proven him right. We don't think he has it anymore, I said. We don't know what he's got. You guys do Parkinson's and parkinsonian syndrome. Can we still have the appointment?</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I didn't hear that, she said. Just bring him in.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The stairlifts went in on time. The bathroom was finished the following day. I'd somehow gotten everything done. He'll be so happy to know he can come home, I thought, as I drove out to Providence to give him the good news. He'll have good meals to eat, things to read, people to see, life will improve.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We're going to send you home tomorrow, the social worker said to him, after I told her we were good to go.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Don't think I'm ready, he said, to my shock.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Why not? I asked.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Just don't think I can do it, he said.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The doctor came in to see him later that afternoon.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Don't think I'm ready to go, my guy said to the doctor.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Sure you are, the doctor said, smiling.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">No, my guy said. I don't think so.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But the film crew is coming, I said. They'll be here in a week. We've got to get you comfortable at home before that.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">No, said my guy. They can shoot here.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Look, the doctor said. Everything's ready for you at home. You can do it. You'll be fine.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">No, said my guy. I don't think so.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Desperation began to creep into the doctor's voice. Here's the way it is, he said. You can't stay here. Other people need this bed. Another patient is coming tomorrow. If you don't go home, you'll have to be sent to long term care, and believe me, there won't be any good conversations to be had over there. Think about it.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That brought my guy up short. He'd grown used to nurses and doctors close at hand, ready for any eventuality. He'd grown used to the intimacy of this place, to the good conversations he had with his visitors and his roommates' visitors, with the nurses, the students, and especially with this doctor who he really liked. And perhaps he was more than a little worried about how I'd do as his permanently on call nurse. He had every right to worry about that. I was worried too. Yet his reluctance still surprised me. He'd never doubted his own ability to do anything before, or if he had, he'd hidden it well. I am the one who is the chicken. The worry wart. The one who plans ahead for any eventuality. He's the guy who always rolls with whatever flows .</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Please, I said. Try.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Okay, he said. I'll try.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But he didn't look happy.</span></span><br />
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ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com2tag:blogger.com,1999:blog-8256131156058173921.post-29991597441576851472018-07-27T09:30:00.000-04:002018-07-27T09:30:25.740-04:00Field Notes from a Medicare Disaster: Fourteen<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmcq4S-B0N-j1DU5r2tH4vBwefrKPvFLHzVTsh-swDIcD71IvWcemo8TI_F5XSLh1VY9xLLT1p_0Jf5KrL6U1h7931k3gz9g1v-bx2flcyw6ehiqXrZpiv1i7clIFPKHzUMzyyCZCBo14S/s1600/wheelchair-749985_640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="426" data-original-width="640" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmcq4S-B0N-j1DU5r2tH4vBwefrKPvFLHzVTsh-swDIcD71IvWcemo8TI_F5XSLh1VY9xLLT1p_0Jf5KrL6U1h7931k3gz9g1v-bx2flcyw6ehiqXrZpiv1i7clIFPKHzUMzyyCZCBo14S/s400/wheelchair-749985_640.jpg" width="400" /></a></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">As the days and weeks went by, my guy made slow-- achingly slow-- progress. Context is everything: he'd arrived at Providence unable to even turn himself in his bed, so it was great progress when he got to his feet in the gym (okay, yes there were two physios on either side of him, and he was holding on to a walker with white knuckles, but still). It was also progress when, with the aid of what is called a saskapole, he was able to pull himself on and off his bed and into and out of a wheelchair using his own muscle power instead of the Hoyer (something he began to do not long after they stopped the laxatives he didn't need and the blood pressure drug that made him dizzy). When the saskapole was first put up in his room, at his insistence, but against the better judgement of his physiotherapist, he got cocky and tried to use it without a helper: he ended up sliding to the ground like a talent-free pole dancer while his roommate pressed the help button.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Gradually, he began to take over more of his own care, shaving himself, washing himself in the shower, achievements proudly reported by his nurses (he put on his socks today!) who were great cheerleaders. But there was no hiding where everyone at Providence thought he would get to in the long run: the occupational therapist wanted us to order a wheelchair designed just for him because that was his future. What else to expect with the diagnosis of a neurodegenerative disease? There could only be regression. He would never be as able as he'd been before he got the flu when he'd climbed up and down the stairs several times a day, and did it more easily than walking. They wanted to teach him how to "walk" in a wheelchair using his heels and legs to pull himself along, rather than his arms. The lead physiotherapist had a theory that relying on his strong upper body was a mistake, that he should work hard to rebuild his legs. And this turned out to be the correct strategy, as you will see, though the results would surprise her. I measured the door openings at home to make sure the bathroom reno would permit a wheelchair or commode chair to roll in and out and ordered two stair-lifts, one to an outside door, one to the second floor, because, so far as the physiotherapist and the occupational therapist were concerned, there was no way in hell he'd be able to climb or descend our stairs again. It was suggested that we might need a saskapole by the bed and in the bathroom too.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">In other words, as a friend of mine who died young from a medical error used to say: situation bleak.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And yet: as I ran around doing the things that needed doing I refused to dwell on bleak. The fact is I didn't really believe the diagnosis and so I didn't really believe the prognosis either. But truth is more than facts. The truth is I could not get my head around the notion that he would not improve. And neither could he. We have both spent our lives doggedly working at difficult problems until we conquered them or failed with honor. The belief in the inevitability of progress through hard work is a habit of mind rooted deep in both our childhoods. ("Just put your head down and bull your way through," my Dad used to say. "If at first you don't succeed, try, try and try again," his Mom used to say.) We could not just shake off our belief in that belief. and besides; he <i>was</i> improving daily, if only in tiny increments. There were good days and bad. First he had a good day followed by a bad. Then he had two good days followed by a bad. We thought he could do stairs again, that he <i>would </i>do stairs again if they would just let him try. But they didn't want him to try, not without big people standing by. We didn't see the virtue of building the legs and letting the arms go to rack and ruin: we asked if he could do weights. No, they didn't want him doing that either.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">We were directed instead to practice using the wheelchair, and later, getting in and out of a stairlift. Providence has a small stairlift set up on a short staircase in a big room on the basement level of the main building. He practiced getting out of the wheelchair, using a walker, and then getting himself on and off the stairlift. It went well. He smiled and waved like the Queen as he sailed up and down again.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">One day, the wheelchair people brought in a snazzy one for him to try, much lighter than the generic wheelchair he'd been using, with cushioning designed specifically for him. I had to learn how to disassemble and reassemble it in order to get it in and out of a car. But at least I could lift it. Standard wheelchairs are very heavy. The company that would actually supply it, with a government subsidy of 85% of its cost if the Local Health Integration Network officials approved (not a forgone conclusion as I would discover), is also a listed supplier of other needs like handholds to screw into door frames, like commode chairs that can roll right into and out of a shower, like a saskapole. Each for a price. A hefty price. The wheelchair, even with the subsidy, had a really hefty price. People who have no money do the same thing with these devices that they do with prescriptions for medications they cannot afford: they don't order them. The medical aid business is growing almost as fast as funeral homes what with baby boomers learning first hand that aging is not for the faint of heart and that death, unlike taxes, actually<i> is</i> inevitable. (Taxes, as the rich know, can be avoided by means of incorporated shell companies in tax havens where the sun always shines.)</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">About two and a half weeks after he was admitted to Providence, the social worker on his floor made an appointment to discuss his discharge date. They wanted him out by the 23rd of March, one month after he was admitted. That discharge date had been on the weekly schedule set out on his bedside table as soon as he arrived, long before anyone knew what his rate of recovery might be. Apparently, they intended to stick to it come hell or high water. I explained that the bathroom reno might take more time, and he couldn't come home if he had no bathroom. Similarly, we had to wait for the stairlift which had not yet arrived from Britain. Also, I told her I wasn't sure how I was going to manage even with the finished bathroom and a stairlift. He needed help with everything from getting to the bathroom to dressing to getting to bed. While I could screw handholds to door frames so he could haul himself where he needed to go, there were no young nursing students available at our house to lend a hand when needed. I work, I explained. I cannot be a full-time nurse.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I wasn't to worry about that, she said, help would be made available through the Local Integrated Health Network. But not for more than 45 minutes a day if my mother's experience was any guide, I said. I begged for at least another week past the original discharge date. I had no idea that begging was not necessary: I could have simply refused that date and refused any transfer to another facility, and they would have had to accommodate us, as the story below makes clear. I explained to the social worker that a film crew was coming to shoot a film on him at the end of the month, so would it okay if they shot it at Providence ?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">They had never had such a request before, permission had to be sought, she said. The care coordinator seemed particularly pleased at the prospect.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">In the meantime, roommate John was going home on weekends, although his blood pressure was being driven up by stress at home. We heard all about the problems of his life, just as he heard all about ours. One day I arrived to find his wife very upset. She was an admirable woman in many ways, not least because her fingernails were always perfect in spite of the hard work she did all day. She wore her hair in a ponytail and dressed in oversized sweatshirts as if in her own mind she was still a lithe teenager hanging out with friends after class. She was feisty. She was kind. She was smart. She was running herself into the ground trying to take care of everything and everyone she cared about. She said John was going to be moved to another room down the hall, a three bed room. He was unhappy about it. I was unhappy to hear it. He and my guy had each other's backs, for one thing. Our families enjoyed each other's company for another.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Why? I asked</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A man with insurance entitling him to a two bed room is getting this bed, said his wife.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But we don't have insurance either, I said.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A rebellious/defeated look flashed across her face. It said, without words, that the haves are always treated better than the have-nots in our everyone-is-equal medicare system, and that she and John are have-nots. When John got back from physio he said that if he didn't like the new room, he'd just go home and not come back.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A few nights after John moved, my guy was awakened by a bedlam of grown men bellowing at each other. Apparently John had come in late and turned on his bed light which disturbed the man in the bed next to him, a man who had been in that bed for no less than two years, a man who steadfastly refused to be discharged from Providence and gave new meaning to the word difficult. When I stuck my head in to see how John was doing the next day I found him in a dark and crowded space. He said he was doing fine. I said I'd heard he'd been in a fight. He grinned and said he liked a fight. Not good for the blood pressure, I said. Yeah sure, he said. Did I know the long wait for help between 4 and 11 p.m. was happening again? He couldn't understand why. The fix was so simple and wouldn't cost Providence a nickle. They just needed to bring on a second shift of nursing students between 4 and 11. Nursing students must do rotations in hospitals as part of their course work. There were more than enough students to go around.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Brilliant, I said, I'll go and suggest it to the care coordinator.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">So I hunted down the care coordinator and gave her John's suggestion.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Great minds think alike, she said, we've just started to move on that. Would you like to be on a community advisory committee?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I don't live in this community, I said, and besides, it was John's idea. Why don't you invite him?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Her blank face made it clear she had no interest in John at all. I'll think about that, she said.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">She may have thought, but so far as I know, she did not invite.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I arrived one morning to find the new roommate on John's former side of the room, a man in his early fifties. Call him Tom. He was sitting in a wheelchair beside his bed, staring at nothing. His TV was not turned on: it was broken and no one had come to fix it. He had no reading material. He had spectacular tats that run up and down both arms and across his chest, the kind seen on made members of the Russian Mafiya. As he was wearing basketball shorts and a sleeveless shirt they were on full display. I wanted to ask him about them and about his life in general but he'd had a stroke that was so bad he could not speak. He could barely swallow: the speech language pathology people kept bringing him jellied liquids instead of water to drink, though his lunch tray had had things on it that he shouldn't have had. When his meals came, he choked, and choked, and choked, sending me running down the hall repeatedly to find a nurse to clear his airway. As we would learn, he had been in this state for months, first at another rehab hospital, then at home. He'd spent most of the last year on a bed set up in the family room.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I didn't see any of his family for some days. I wondered, at first, if he had one.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Then his wife appeared one afternoon with his mother. Their problems made ours look small. First, they don't live in Toronto but in a smaller town east of the city. Tom's wife looked significantly older than her years. Short, spikey hair, makeup to hide exhausted eyes or at least to avert attention from them, a tad overweight, desk-bound overweight. As long as she was in the room she never stopped fussing over him: he hadn't shaved, hadn't had a shower, she determined these things asking him yes or no questions which he answered by affirmative or negative nods. She spoke in a loud voice, an irritated voice which I recognized because the same voice kept emerging from my own mouth whenever I came in and found my guy in bed, or his physio cancelled. She had found Tom in need of changing so she went charging down the hall looking for his nurse. I'd grown less angry about that sort of thing, mainly because it happened less frequently than when my guy was first admitted. But Tom was new to Providence and she'd been managing his care to her own high standard at home for almost a year in spite of the fact that she also had a full time job as an investigator. She'd had their family room wired with video cameras so she could check on him from her desk at work.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Her husband, she explained when she came back, had been an undercover cop for years, on a drugs and gangs beat, which is why he had those tats, and probably why he'd had the stroke, it was all those years of unbelievable stress, of living a lie every day and wondering when the people he was setting up to be arrested would figure that out and kill him.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">His mother, a sweet woman with a June Cleaver face told me later, while Tom was off in the gym, that Tom had been athletic all his life, played every sport there is, and that after his stroke made it impossible for him to walk, let alone run, he'd just cried, and cried. You mean he felt defeated? I asked. I could see that some days he refused physio and just stared at the TV. Yet as the days went by, the physiotherapists helped him get better control of his body and the speech language pathologist taught him how to control his breathing so he could utter a few words. Though his choking continued, the nurses taught him how to make it stop on his own.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">As I watched his progress I began to think Providence was living up to its name.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"> I arrived at Providence at 8:30 in the morning to take my guy to his appointment with the neurologist at Michael Garron Hospital. His day nurse, a tiny woman who was fiercely attentive to her patients' needs, who did everything she could to make things go smoothly for them, had put him at the top of the shower list. Though I arrived early, he was ready to go.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I haven't said enough about the nurses at Providence, both male and female. There was a terrific male nurse who had been a doctor before he immigrated to Canada from Albania in order to better the lives of his children. He'd figured it was faster for him to get certified in Canada as an RN than to redo medical school and wait in line for a residency. So he had sacrificed himself, and yet he was not bitter. His children were doing very well at school, thank you. He made it his business to buck up the spirits of his patients whenever he could, especially the men who were so downhearted at the loss of their strength. When my guy pulled himself along in the wheelchair in the hall, he'd praise the smallest improvement. Then there was the tiny Philipina who had two children at home, but worked most days without stopping to sit down for lunch, worked until her skin took on a grey tinge from exhaustion, then went home and worked some more. And how about the woman from the Caribbean, tall, slim, who handled my guy without breaking a sweat, always with a kind word, always encouraging. And there were so many students who came, in their burgundy uniforms, from everywhere on earth, earnest young men from Pakistan, young women from Brazil, from Somalia, from Ethiopia, some wearing hijabs, some with their hair swinging free, all with that inner glow that comes from helping others, that comes from knowing you can. It's a noble calling, one of them said. I coudln't remember the last time anyone I knew used the word "noble" in conversation.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">We went downstairs and out into the brisk morning air to wait for the wheelchair taxi which arrived exactly on time. The driver rolled him in his wheelchair through the van's back door, fastened his chair to the floor, and off we went.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The neurologist' s office was off a dark hall lined with patients filling all available chairs. The neurologist kept us waiting long past the appointment time, but I didn't worry because I had brought a Sinamet with me in case we had to wait past the time when he was supposed to take it.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The neurologist was a tall, lanky man in his middle forties. He made it clear right from the start that he would not be taking on my guy's case. I don't do Parkinson's, he said. But perhaps we could tell him what had been going on?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">We raced through the issues, explained that we'd had a problem with the neurologist assigned by St. Mike's, and gave him the whole story as quickly as we could.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Would you let me examine you, he asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That's why we're here, said my guy.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Carefully, slowly, he went through the same physical tests done by the neurological resident at St. Mike's which had produced a diagnosis of Parkinsonian syndrome.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">"Well," he said. " I don't think it's Parkinson's or anything like it."</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That's what the very first neurologist said, I said. He'd ruled it out. And the doctor at Providence said the same thing. But if it isn't Parkinsonian syndrome, what is it?</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">"I have no idea," he said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well would you take me on, my guy asked. I like you.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">No, he said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Something made me wonder if he had tangled with our former neurologist, or had some fundamental disagreement with the way neurology is managed at St. Mike's</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Would you care to comment on the fact that a resident made this diagnosis and the neurologist we were assigned is an epilepsy specialist?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">No, he said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Is this about medical politics? I asked.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I can't comment on that, he said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Which was of course a non denial denial and in my world, the equivalent of a yes.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well, what should we do? My guy asked.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I think we should do a test while you're at Providence with nurses and doctors to help you, where you're safe, he said. I want to run an experiment. Let's stop the Sinamet and see what happens. If you get worse, the original diagnosis might be correct. If you don't, well....</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">You mean stop the pills right now?</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That's right, he said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Twenty four hours later I came to his room to find him sitting up in his chair with his ankle over his knee, the way he used to sit, but which he hadn't done for months and months. His voice was stronger, more his normal register. And there was something else, a brightness to him that I hadn't seen for a long time.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">You're feeling better, I said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Right, he said, with a grin.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">When Daughter Number One came in she was astonished.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">His voice, she said, the way he's sitting, the way he's talking, it's like Dad's back.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Exactly.</span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com3tag:blogger.com,1999:blog-8256131156058173921.post-47077982428585402732018-07-20T13:00:00.003-04:002018-07-20T13:00:52.996-04:00Field Notes from a Medicare Disaster: Thirteen<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I had a chip on my shoulder as big as the moon by the time I got to Providence on Monday.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I had had words with a nurse on Sunday because I had found my guy in bed with robe and sheets that needed changing and it was past 10 in the morning. He'd been in that state since before breakfast, and breakfast at Providence is about eight a.m.. She didn't appreciate the way I came right at her: she let me know it. I didn't appreciate the usual excuses--it's the weekend, there aren't enough staff available, that's just the way it is. It had taken a few moments for me to pull my anger down to a dull thrum, to apologize to her for being demanding, which I did, not because she deserved the apology, my guy did, but because I was doing him no favors by losing favor with her. It was at this point that I understood why patients do not always complain about inferior or even sadistic treatment. He was at her mercy. So I had changed my tack and asked her how I could help. I had said I would be pleased to change his gown and bed if that worked for her, all she had to do was point me at the right cart for the linens. She had in turn adjusted her tone from "don't you be snippy with me" to neutral.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But by Monday morning I was furious at this situation. Why should he have to be uncomfortable for hours until I arrived or until someone on staff managed to fit his needs in among their many other duties? Why should I have to insist on reasonable care in a humble tone so as to avoid retaliation, subtle or otherwise? And why had so much of the burden of care shifted to the family? The treatment at St. Mike's and here was beginning to remind me of what I knew of developing countries where families must sit around the clock with their loved ones, bringing them food, pillows and blankets, even medicine. I was coming to see him every day, as was daughter Number One who lived close by. (Daughter Number Two had moved to another city and could only check on him by phone.) I was doing his laundry at home, bringing him coffees and newspapers, shaving him, making sure his lunch tray came on time, taking it away when he was done, making double sure he got his medication, working on bed exercises with him to help him get some muscle mass back in his legs. After a few hours of that, I drove back home again across town to take care of business and, after that, to supervise the doings of the contractor renovating the bathroom at light speed so he could come home at some point.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And what about him, the patient whose needs are supposed to be front and center in this system?</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I thought Providence had brass nerve to claim it offers patient-centered care on a banner strung across a wall in the main entry hall. This sign trumpeted the recent merger between Providence, St. Michael's and St. Joseph's hospitals, along with a gag-me-with-a-spoon vision statement. The phrases patient-centered, or worse, client-centered care, appear on the brochures and websites of most of the health care institutions I have dealt with in the last few years and on most of the documents produced by the various regulatory Colleges charged with protecting the interests of patients. But these are words, not deeds. What we actually have in Ontario is budget-centered care, which is exactly what my Dad predicted so many years ago.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Newspapers and magazines have reported for years that in Ontario's hospitals, patients are routinely stashed in the halls, or in offices, and occasionally even in toilets. because there are not enough beds to go around and not enough nurses to help those patients stuck on narrow gurneys waiting for one. Their families must help them. That is because hospitals have been closed and nurses let go in significant numbers ever since the Rae government of the 1990s. Ontario is at least 20,000 nurses short of a a barely adequate deck. Nurse Wettlaufer's murders and attempted murders happened in long term care facilities, not hospitals, which is ironic because only long term care facilities have a specific, legally required patient/nurse ratio. That ratio is low which may explain why Wettlaufer often worked alone at night, the only nurse assigned to care for a number of inmates. She made frequent mistakes while helping herself to drugs not kept under lock and key and not properly accounted for. She was able to relieve her personal demons by killing patients who irritated her, injecting them with purloined insulin. In this so-called patient-centered system, the College of Nurses of Ontario, the regulator of the province's nurses, didn't catch her, though there were complaints; her employers didn't catch the murders, though one did fire her for bad habits yet gave her a reference which allowed her to work elsewhere; her colleagues didn't catch her; her union didn't catch her; and the coroners didn't catch her either -- because they barely investigated the deaths she caused, even those that were medically surprising. She finally outed herself to a psychiatrist, who turned her in to the police.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Most of these failures-- to catch her, and to properly staff acute care and rehab hospitals--can be traced back to the same sin, administrators making short-term money-saving decisions, which in the longer term cost the system much more.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I was beginning to think these vision statements were a result of cost saving too, that they were churned out by one PR guy who keeps his fees low by recycling the same meaningless phrases. Or maybe an AI writes them now -- that would be cheaper still.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">My guy was in bed and not wanting to get up. Dizzy, he said. So dizzy. The nurse, when I hunted her down, explained that he complained of waves of dizziness every time she asked him to turn over to give him a sponge bath or to help him change. But progress was being made. A physiotherapist would be in soon to work out a program for him.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">In the meantime, I went in search of the patient care coordinator to complain about the slow response time on the previous Friday.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">It being Monday, she was in her office. When I explained that it had taken 40 minutes for a nurse to respond to my guy and his roommate's calls for help, and that, in addition, a nurse had been verbally abusive to a patient down the hall, she said with a certain bureaucratic je ne sais quoi that she would have to confirm these complaints with the actual patients involved, that my second hand report was insufficient.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Fine, I said. I went back to the room and explained to my guy's roommate that he was going to have to repeat his story to the patient care coordinator personally, she wouldn't accept such information coming from me. He rolled his eyes in his head. His wife did the same when she came in later.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Eventually, the patient care coordinator arrived in the room. There was something about the way she focused her attention on John the roommate and not on my guy, the one who had suffered the long wait, that was just a tad disturbing. I read her manner toward John as edging toward intimidation, as if he had a history of making false complaints and she now dared him to make another. Yet John did not wilt. He and his wife repeated their concerns exactly as they'd presented them to me:"forty minutes, I could have been dead!" he said to her, and "no one should be talked to like that," said she.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Daughter Number One arrived for a visit in the middle of this conversation.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Daughter Number One has knowledge, acquired in her professional capacity, of many of the rules regarding patient care. Daughter Number One asked if she could intervene. Go ahead, roommate John said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">She asked a simple question: what is the ratio of patients to nursing staff between four in the afternoon and eleven in the evening on this floor?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The patient care coordinator said it was in line with the College's rules on ratios, meaning the College of Nurses of Ontario.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Daughter Number One persisted. So far as she was aware, the College of Nurses of Ontario, the regulator, has set out no such rules. There are only ratio recommendations which I would later come across in a brief given by the Ontario Nurses' Association to the Ontario legislative committee on finance and economic affairs in the run up to the 2017 Ontario budget. Ontario, according to the Association, has the lowest ratio of Registered Nurses to its total population of all the provinces in Canada. That ratio has been getting worse, not better, as hospitals strive to meet their budgets by getting rid of full time nurses and hiring agency nurses at three times the hourly cost during upswings in demand. Ontario would have needed to hire 18,000 full time nurses in 2017 to pull itself up from last place to second last. The Nurses' Association also referred in its brief to various studies indicating that in acute care settings, the ratio should be one Registered Nurse ( RN) to four patients. The Association pointed out that the Auditor General had established that in many community hospitals the actual ratio is more like one RN to 9 patients. The Association also cited studies showing that such low ratios lead to an increased risk of patient deaths, not to mention morbidity. Yet, according to the minutes of a recent meeting of the College of Nurses of Ontario, we should not hold our breath until this regulator requires appropriate ratios. At that meeting it was asserted that it is just too hard for the College to figure out what the different ratios should be for the various settings in which nurses work (though other jurisdictions seem to manage). Instead, the nurses themselves are expected to advocate for better ratios with their employers. ( Surprise! the hospitals don't listen.) Daughter Number One was aware of all of that. She was also fairly sure that recommended ratios were not being met at Providence.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">So what is that College-required ratio please? Asked Daughter Number One again, sweetly.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I'll try and get it for you, said the care coordinator. (She never did: she could not. There is none.)</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">So let me be clear, said Daughter Number One, as far as we can tell, there is only one nurse available between 4 and 11 on this floor, and this floor has about twenty patients, mainly stroke victims and people with serious heart conditions. Someone could call for help, but, if that nurse is working with someone else in difficulty, that nurse wouldn't be able to respond to any other patient who might also be having a stroke, or heart attack, or who might have fallen. That can't be safe, she said.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Oh we have a culture of care here, said the care coordinator. Anyone else working on the floor is supposed to respond if a care bell goes off and the nurse is on break or on lunch or with another patient.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">No one did, I muttered.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But, said Daughter Number One, there is no one on the information desk after five during the week, and no students after four. We're not complaining about the quality of the nursing. We're saying the nurses seem to have an awfully heavy workload. Have the nurses ever complained to you about that?</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">No, said the care coordinator, no nurses have complained.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">They complained to me, I muttered.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">By this point, the attitude of the patient care coordinator had subtly changed from defensively aggressive to concerned. She said she'd take up the complaint about the verbal abuse of a patient with the nurse in question, that she could easily establish who had been on duty that evening (because there would only have been one nurse on duty, I said to myself between grinding teeth) and that kind of behavior is not tolerated. She also said she would also look into the staffing ratio after 4 p.m. Then she left.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Wow, said John to Daughter Number One, that was interesting. Where did you learn to do that?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The physiotherapist appeared. I took one look at her and wondered: how in hell is she going to manage my guy? She was so tiny she barely came up to my shoulder, never mind his. She could not have weighed an ounce over 100 pounds. She brought with her an occupational therapist to take measurements for a wheelchair for my guy, so he could begin to move around on his own. The occupational therapist was also very tiny. Both were sympathetic, very keen, and, as it turned out, wonderfully capable of handling my guy. They listened carefully to his story, with particular attention to his Sinamet schedule and when exercise might be most effective. The physiotherapist said she would organize his sessions around that. Session one was set for the next day.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">How about that, I said to my guy. They're organizing around you for a change.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The doctor appeared while my guy was sitting up in a chair, strapped in so he wouldn't fall out, eating another salt-free, taste-free vegetarian lunch. When the doctor crossed the room's threshold, he smiled and asked if he could come in and bring students with him. I would like to give you that doctor's name in order to praise him, but I have kept all individuals' names out of this blog so I can write without fear or favour. I am certain he will get public praise from others. He deserves it.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The doctor was a man in his late fifties or early sixties, with lots of grey in his curls, and a middle-aged paunch. He wore a rumpled striped shirt, no tie, ordinary pants, shoes of no account. He was not a specialist, just an ordinary MD, he explained later, who had been working with neuro patients on this floor for years. First, he sat with John on his side of the room and they had a nice natter about how John was doing and whether it was safe for John to begin going home on weekends. He thought it was. Then he turned his attention to my guy. He smiled again, introduced himself, shook hands, asked how he was doing, asked questions about his background, showed an interest in what he did in life. He'd brought a file with him, which he opened as he sat down and spread over his knee. He settled himself as if he had all the time in the world.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">This was the first time since that charming neurology resident at St. Mike's made the diagnosis of Parkinsonian syndrome that a doctor, other than my guy's family doctor, had taken the time to sit down and to ask open-ended questions about my guy's life and state of being. This doctor also made eye contact, he made jokes, he asked us to tell him what had been going on that had brought my guy to this bed. So between the two of us, we gave him the whole history from the beginning to the present. He listened very carefully. He noted the blood pressure issue and the dizziness. Not dizzy now, said my guy. The dizziness seems to come and go.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The doctor asked how his blood pressure had been taken, lying down, or sitting up?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">It turns out that matters. It turns out that my guy was suffering from orthostatic hypotension-- elevated blood pressure when lying down. When the doctor took his blood pressure while he was sitting up, which he'd been doing for a while, he found it had dropped twenty points from the morning's reading taken lying down. This phenomenon is apparently well known, especially among elderly patients. The doctor also explained that Sinamet is known to cause high blood pressure.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That was like a slap in the face: no one had mentioned that to either of us before, not the neurologist, not the residents at St. Mike's, even one though my guy had often complained of dizziness and I had expressed concern about his suddenly high blood pressure when he was admitted. One resident had made an oblique comment about how a drug for one problem will cause others, you take the bad with the good, but he'd never said Sinamet could have been the cause of the onset of high blood pressure in a man whose blood pressure had always been steady as a rock. And because it was never mentioned, I had never Googled high blood pressure as a side effect of Sinamet. If I had, I wouldn't have offered my guy extra Sinamets whenever he was having a bad time.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The doctor asked for permission to do a physical exam.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Sure, my guy said.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">He felt his arms, checked his reflexes, did a number of things I had seen done before by the neurologist and the neurology resident.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well that's interesting, he said when he was done. I'm not convinced of that diagnosis.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">We looked at each other, my guy and I. We had been wondering about alternative explanations for what was wrong with him, everything from normal pressure hydrocephalus to too many concussions in his youth leading to unsteadiness and gait issues which led to the recent serious falls. We had actually talked about whether Sinamet, which is supposed to replace the dopamine no longer produced in the substantia nigra, might also reduce the amount of dopamine naturally generated by the remaining dopamine producing cells in that part of the brain. Most body systems work on a feedback/need basis. A signal is tripped to say that not enough of a substance is available, and so that substance is made. I had been thinking specifically about how this works with SSRI's, drugs which act on the serotonin signalling system of the brain to modulate mood. SSRIs have be be stepped down very gradually when doctors take their patients off them because it takes time for the patient's brain to adapt to different levels of serotonin. Only later would I learn that the same pharmacologist who discovered that dopamine is a neurotransmitter necessary for movement and who led the introduction of levadopa/carbidopa, alias Sinamet, to Parkinson's sufferers, also led the development of SSRIs.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well, I said to the doctor, we have our doubts too and that's why we asked for another neurological work up at St. Mike's. We were advised that too many cooks spoil the broth.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The doctor asked for the name of his neurologist. We explained that we no longer had one and we explained why. We weren't polite. The doctor admitted that he'd had a few runs ins with that fellow himself. I told him about the appointment the following month with another neurologist at Michael Garron.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Who? he asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I gave him the name.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Oh yes, he said, I know him well, you should definitely go to that appointment.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But how will we get him there? I asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Don't worry, he said, we do that all the time. But let's just review the medications he's on, shall we?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">He read the list out loud from the file on his knee. I recognized most of the drugs he named, though I was surprised my guy was still getting laxatives as that problem had turned into the reverse.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well let's stop that then, he said, making a note. Then he mentioned a drug I'd never heard of-- Ramipril.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">What's that for? I asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But I thought they only gave him something in the Emergency for that and then stopped. Why is he still on that? Why didn't I know he's on that?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">He got an interesting look on his face. Could explain a lot of things, he said. That's why the salt-free diet, high blood pressure could lead to a stroke so it needs to be treated, that's why he's on it. But the thing is, he said, Sinemet is known to cause high blood pressure and Sinamet also sucks salt out of the body...</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">So he's like losing too much salt for his muscles to function?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Let's take that medication away and put some salt back in his diet and take his blood pressure lying down and then after he sits up, and see where it goes.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Salt? said my guy. I can have salt?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">After the doctor left, I ran down the stairs and got salt packets from Tim Horton's so he could splash it all over his next meal. When I came in the next day, I brought him a bag of salty chips. John's wife had already brought him large, full salt shaker. When the physiotherapist came to get him for his session that day, for the first time he was able to cooperate enough to slide sideways on a transfer board from his wheelchair to a bench.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">In other words, stopping two drugs and adding salt had already caused a big improvement.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The next day, the dizziness was reduced further. The day after that it was reduced more. The day after that, my guy was able to stand on both feet for longer than a few seconds, with help mind you, but still. He hadn't been able to do that for six weeks.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A corner had been turned.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Which made me think this doctor really knew his stuff, and if he was not sure sure about that Parkinsonian syndrome diagnosis, then it might well be wrong.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Where did that leave us?</span></span><br />
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<br />ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-13310902621814146542018-07-13T09:46:00.002-04:002018-07-13T09:46:52.725-04:00Field Notes from a Medicare Disaster: Twelve<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Our family doctor had bad news and good. The bad: her friend, a neurologist at Michael Garron Hospital, formerly known as Toronto East General, was going on maternity leave so she would not be able to take over my guy's care. The good was only good-ish: another neurologist at Michael Garron had agreed to see him in her stead--not to take over his care, mind you, just to see him. A letter arrived from that doctor's office shortly thereafter with instructions about bringing his OHIP card and checking in at the hospital's admitting department, etc. The appointment, at 10:30 am., had been set for the third week in March.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">It was the middle of February. My guy couldn't get out of his hospital bed without a Hoyer lift, couldn't roll over without waves of dizziness. His muscles were wasting away from lack of use. How were we going to get him to a medical appointment in March? </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Early one morning I got a phone all from St. Michael's hospital: finally, a bowel movement. I was told the entire floor had erupted in cheers. And there was other news. There was at last a bed available for him in a rehab center.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Which one, I asked crossing my fingers behind my back and whispering to myself please, please not Providence.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">So much for whispered prayers and finger crossing: Providence was the only place possible for him, I was told, due to the fact that he suffers from Parkinsonian syndrome and is therefore considered to be a slow rehab patient. Most of the other places have a more rapid turnover rate. Providence, on the other hand, could keep him for at least four weeks. St. Mike's would ship him there by medical transport the next morning. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I went to bed that night fulminating, though there was no one to hear me, about how much time it was going to take just to get there. Getting there would be a daily event because, as experience had shown, leaving him to the tender mercies of hospital staff was not advisable. Yet I also had work to do, a new book on the market that needed my support, a business to oversee, a house to run, an aged mother to attend to, grandchildren I hoped to play with, friends I like to speak with every now and again. Where was I going to find that extra time? Getting up earlier and going to bed later works for a while, but not for months on end, and I had already been dealing with the long trailing edge of his flu for six weeks.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I was also struck by the hospital's name. I couldn't get it out of my head. Providence as an idea is often contrasted with fate--a concept shared by many cultures but most memorably advanced by the playwrights and poets of the Golden Age of Greece. Fate is a future inexorable and unavoidable which sticks to a person from first breath to the long goodbye: fate means that everything about our lives is written in the stars, foreordained, no rewrite possible. Providence is the opposite notion. Providence refers to God's intervention in the world and, specifically, in the lives of individuals. God knows when every sparrow falls and is familiar with every hair on our heads, or so we are told. The Christian God is supposed to be benevolent, so in this context Providence is the deliverer of miracles. Yet the Christian God has also been known to punish, so some interventions from that Hand can be terrible. Providence is the name for change imposed on us from high above according to the designs of the Creator. It has little to do with the exercise of individual will and its nature is double-edged. Things going well? Bend your knee to Providence. Things not going well? You've only yourself to blame for the hardships dealt by the Hand, or, if you are not at fault, the bad times fit some larger design and yours not to reason why. In other words, like most religious concepts, providence as an idea is inherently contradictory and as multi-layered by millennia of theological arguments and schisms as a fine French pastry. For Catholics, it implies a sweet flowing river of balm aimed straight at the hearts of those who suffer. But that river has a punitive undertow, a hint that if one finds oneself at the mercy of Providence one may have gotten exactly what one deserves. So Providence is both miracle and torment --a la Dante. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Religious dogma does not matter at all to my guy, an atheist unencumbered by religious dread. He was just grateful to get out of St. Mike's alive. But I have always danced a two step between the mysterious and the factual, so the name gnawed at me.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I drove to Providence the next morning. It took me 45 minutes and that was outside of rush hour. It took me another 10 minutes to figure out where to park due to the fact that its system is as tricky as the Montreal Cognitive Assessment test. Providence is not just one hospital building, it is an interconnected village of low rise structures on top of a hill. First a card spits from a kiosk as you enter the main parking area, but to leave Providence you must pay inside at another kiosk which spits out another card for insertion on the way out. No new card to insert, no escape from Providence. And: parking near the Hospital entrance for longer than 20 minutes is forbidden. Neither should one park near the outpatients' clinic around the corner from the rehab hospital's main entrance or the Hand might take a swing at you due to your selfish and inconsiderate behavior. But it's a long walk to the hospital if one parks near the long term care facility attached to its backside. (If a rehab patient can never go home again, that person can be moved by gurney directly to a bed in that facility. If there is a bed available. Don't hold your breath.)</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A small forest lines the sides of a valley below the housing development across the street. There is a pond in a hollow below the main parking area. The subway is elevated at this portion of the line so every few minutes a silent train swoops across this semi-urban, semi-park like landscape from the south heading east. There is not much in the way of shade or shelter for those who must trudge from the subway station the several hundred meters to the hospital entrance. Though there are ramps for the halt and lame, it would be a trial for anyone without a car to climb the hill from the subway station or the main bus stop. Maybe it's meant to be that way.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And yet, when I finally found a place to park my car and walked up to the front door, I liked this spot. There was a nice wind in my face, a peaceful sounding wind, and minimal traffic noise, a good change from the urban bustle of the downtown core. I walked through the main door, past the ubiquitous Tim Horton's on the right. (Why does every hospital I've been to in Toronto have a Tim Horton's concession?) In the admitting office to the left, a man on a gurney offered papers to a staff member trying to find out which room he'd been assigned to. Front and center there was an information desk beside a curved stained glass wall with oversized images of Catholic redemption.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I was instructed to take the elevator to the second floor where I would find the neuro ward and my guy. Its doors opened on a wide hall with more paneling, more religious iconography, this time a white sculpture which I refused to look at closely so I can't say whether it is a statue of Jesus or his mother: plaster of Paris sculptural drapery all looks gender neutral. There were leather chairs and couches to sit on beneath wide windows. There were rooms with plaques on their door frames signifying a corporate gift. One room had a wall of bad books, some games, and some computer stations. There were several large meeting rooms and a very large chapel. I found myself checking how the light fell from the windows, wondering if the views were innocuous enough to suit that film crew. If my guy was still in this place in six weeks, the film crew would have to shoot him here, in Providence. And the truth is, I didn't see how he could get home in such a short period of time. He couldn't turn over in bed without help. He couldn't sit up without help. Our house is full of stairs, there is no bathroom on the main floor, and the bathroom on the second had a tub. How in hell was he going to manage all of that when he needed a mechanical stork to carry him from bed to chair? To get him home, I knew that at minimum I would have to put in a stairlift and renovate the second floor bathroom. I had checked out costs for stairlifts the previous summer in a fit of precognition. They are not cheap. I had been told it could be done in a few weeks if a special order, days if a straight lift. Our stairs turn, so it would be a special order. But the bathroom was the real problem. If they were going to throw him out of here in four weeks, that's how long I had to fix it. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">No one in Toronto does a bathroom reno in four weeks. The contractors always say it's doable, but then reality intervenes, which is a lot like the hard Hand of Providence. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I followed the directions down a hall to a T junction where there was another information desk. I walked by patient rooms and carts filled with soiled laundry. I tried to ignore the smell of urine and feces. Incontinence or inability to get to a bathroom without help is a problem for anyone who has had a stroke and a stroke is what had happened to most of the people in the rooms I passed. Most were older, but a few seemed way too young to be here. One young woman scooted past me on a wheelchair going at a remarkable clip considering it was powered only by her arms. I thought she was a denizen: turned out she was the speech language pathologist. Some of the patients sat in wheelchairs in the doorway to their rooms, waiting for something to happen, or just waiting. I tried to remember my Dad's rule about walking into a hospital room: always smile, he used to say. Always have a joke. I smiled, I waved at everyone as I went by. All the nurses I passed smiled back and said hello.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">None of them were sitting at computer stations in the hallway. They were all on their feet, working with patients. Hah! I thought. How strange.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I found my guy's room on the left side of the T junction, past the doctors' station with its rows of computers, and past a placqued "family" kitchen with a fridge, coffee maker, microwave and sink, past a gym with another row of computers. His name was spelled out on a name plate right at the entry to his room, along with his roommate's.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Whoa, I said to myself. Treating a patient like an important person with a name? How unusual.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">His room was large and bright. To the right, by the door, was a very large washroom with a roll-in sink and a toilet with a large, sturdy commode. Straight ahead was an entire wall of windows with a great treetop view of woods, parking lots, the subway rolling silently by, and a big sky.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">He was in a bed. His trip from St. Mike's, he said, had been harrowing, mainly because it took so long and he couldn't see where he was going. He was dog-tired, he was dizzy. Yes, someone had bathed him in the bed.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">His roommate was a much younger man, a garrulous fellow who wore plaid flannel pants and loose t-shirts whether going to bed or going downstairs for a coffee. His wife was sitting in a chair on his side of the room talking on her phone, doing the job he was too ill to do. One of his daughters and a grandchild ran in and out with treats. Call this man John. Or Job. He said he had five children, and worked as a superintendent in an apartment complex. He had had a stroke for which he blamed himself. He should have changed his habits, he was warned after he had that heart attack. He knew he could have another of each, stroke or heart attack, at any time. He was weak on the left side, but he was at least able to get himself out of bed and into a wheelchair and his speech had not been affected.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">He and his wife were quick to tell me how to pay less for parking. His daughter brought in treats for my guy. They had a searing story of a medical nightmare to tell, centered on the birth of the grandchild playing on his bed, a boy of about five. He had been declared hopeless at birth by a doctor who told them he should be institutionalized, but they had taken him home and loved him and cared for him and look at him now! He was not quite normal, he had trouble meeting my eye at first, and he had trouble enunciating clearly, but other than that, he was like any other five year old boy. He was adorable. He would be fine. They had made it so. So they were wary of medical error, wary of institutional stupidity and cruelty. They told me they would keep an eye out for my guy when I was not there.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">They told me that would be necessary.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">My guy had been shipped to Providence at the end of the week. I had hoped for physio on the weekend, thinking, it's a rehab place, they'll carry on with it over the weekend in a rehab place, won't they? But no: only stroke victims were taken to the gym every day. So another weekend passed without physio, leading to more difficulty turning in bed, more difficulty sitting up. However, this room had an overhead Hoyer system making it easier to get him in and out of bed. A nurse with one helper could do it, and there was no need to wait for someone to haul in a portable machine.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well at least that's an improvement, I thought. He'll sit up more. And there's a great view, good light, he'll cheer up.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">There were other marks that this place was well run. The pharmacist came in to get a list of his vitamins and probiotics and to ask detailed questions about how and when his Sinamet was to be given almost as soon as I walked in.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Though the food was wretched, no mistakes were made: no dairy was brought to him on his meal tray. His diet was almost 100% vegetarian but without any salt.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Please bring salt from home, he said after his first lunch, a vegetarian patty of some sort.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I asked a nurse about salt.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">It's the blood pressure issue, I was told. It's still high. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The second morning, Saturday, when I came in with his clean laundry and the newspapers, his roommate was very upset. He told me that they had had to wait for help from a nurse the previous evening for more than forty minutes. Who needed help? I asked. Your guy, he said. And, said John, this was not the first time this problem had arisen, it was constant. There were almost no nurses available between four and 11 at night. The whole floor was managed at that time by only one nurse with a PSW or two to lend a hand. "So I told her, when she finally showed up," said John, "hey, forty minutes, if I was having a heart attack, I would be dead by now."</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And you know what, added his wife. The other night I came in and one of the nurses was yelling at a patient like nothing you ever heard and I had to chase her down and tell her to cut it out. </span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">My guy was quiet as they told these stories, as if he didn't want to make a fuss. Was he afraid of being treated poorly if he complained? I think he was, which is unlike him. And a fuss needed to be raised. You can't make people in need of the toilet or having a heart attack wait for forty minutes. It's not safe and it's not fair. I went in search of someone to complain to. But it was the weekend, so there was no one sitting at the information desk. The care coordinator was not available either, not until Monday. The gym was empty too except for two people working with weights at the far end. The nurse in charge of my guy's care appeared a few minutes later at the far end of the hall where she was the checking prescription orders for her patients. I walked up to her, a tiny woman full of spirit, and introduced myself. I explained what I'd been told.. She agreed there was not enough staff at that time of day, the nursing staff had complained over and over about it, but nothing got done.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Well maybe I should raise a fuss, I said. Would that help?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">She thought it might.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I went home that afternoon with a bag of laundry to do and a fraying temper. Out of the frying pan, into the fire, I told my daughters.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And yet something, some undercurrent, something indefinable about the place said: hold back on that judgement, keep an open mind.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And sure enough, on Monday, everything changed. A rewrite began. </span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;"><br /></span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-57480573830952436702018-07-06T09:00:00.000-04:002018-07-06T09:00:05.615-04:00Field Notes from a Medicare Disaster: Eleven<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I had become used to running in and out of St. Mike's: I knew where to park without leaving my right arm behind as the parking fee. So I found him quickly in the Emergency. He was in an isolation cubicle, one of a series of new Emergency treatment rooms for patients who might be contagious. I had to put on a mask, a paper gown, and gloves to visit him. I did not do it properly. I let the edge of my sweat shirt escape from the elasticized sleeve of the gown. I put the mask on upside down. My Dad would have been ashamed. The nurse on duty made me do all of it over again properly, and then showed me where, as I left the room, the gloves, gown, and mask were to be peeled off and thrown away, and in what order. Since the SARS epidemic, Toronto hospitals have gotten much better at infection control.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">There was a high clelestory window above his head. The view was a brick wall, but it was an improvement over the standard Emergency cubicle because he was at least bathed in natural light. The sliding plexiglass door/wall dividing it from the corridor had a clever blind system to grant privacy and darkness at the flip of a switch.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He was asleep. The nurse said they were waiting for the test results but they were pretty sure he had the flu, the bad one that had been circulating since November. Weirdly, he'd shown no symptoms of flu at all when he went to bed the night before. And yes, of course he'd had the flu shot, but the vaccine for 2017/2018 was less than 50% effective and people who have underlying chronic conditions are much more likely to get flu, and get much sicker from it, than those who do not. Which is why he got the vaccine, though it turned out to be useless.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I was tired that morning: if I'd known how tired I would become over the next few months, I would have turned around, gone home, and crawled into bed again, not sat there in a hard chair borrowed from the corridor watching him sleep, as if that helped him or anyone else. The fact is that I felt guilty: instead of following the ambulance down in the car, I had gone back to bed. I had had a reasonable night's sleep at home while he lay in this noisy place on a gurney waiting for someone to figure out what ailed him. By then I had had enough of hospital visits in the dead of night, I had simply rebelled against the constant requirements of disease. Maybe it was because I was in a Catholic hospital that the Catholic practice of penance now took over. Sitting in this chair was a Jewish woman's version of saying a rosary for the sin of putting self--like America--first. I kept myself busy by reading the paper, while glancing frequently at the monitors to see what was going on, as if these graphs and beeps conveyed the truth about him. His oxygen saturation was okay. His heart rate was okay. I asked about his blood pressure. The nurse took it, and to my surprise, it was still high. I had assumed it would come down to normal as soon as they got his fever under control. He still had a fever, but it was not that high anymore. Yet his blood pressure was up, up, up.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When I spoke to the physician in charge later in the day, I explained that my guy's blood pressure was almost always low normal and these numbers were very high for him. I also explained that he had a diagnosis of Parkinsonian syndrome, made right here in this hospital, and that he needed to rigorously adhere to the schedule he was on for Sinemet and he was not to have dairy due to the way it interacts with that drug. Yes, the doctor said, he was aware of all that. But he had questions: the file said he had COPD. No, I said. He does not have COPD. He has asthma. The file says he smokes, the doctor said. No, I said, he quit two years ago. The file also says he has high blood sugar and high cholesterol. No, I said, his blood sugar and cholesterol were edging toward high normal a few years back, but he's managed both well ever since. ( I should have asked: why do ancient errors linger like ghosts in your file? What would you have done if I had not been available to correct it?) The doctor said he might give him something to pull down his blood pressure and said he would order the Sinemet to be given at least a half hour before each meal, not that his meals came with any regularity in Emergency, not that they were meals at all, mainly a sandwich and something to drink. I went home that afternoon reassured that they now had a proper history, the correct list of the vitamins and probiotics he took in addition to the Sinemet, and they knew he shouldn't have dairy.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">On the third day of his stay in the Emergency cubicle, I spotted a spray of grainy brownness on his pillow. A nurse said he'd thrown up. I'd never seen vomit that looked quite like that before (and wondered why that pillow was still on his bed, but hey, the nurses in the Emergency are run off their feet). By then, he'd tested positive for the flu but had apparently also acquired pneumonia. They had him on tamiflu, but would add an antibiotic. I brought him his probiotics from home from then on, along with some of the things he usually ate them with -- non dairy yogurt, blueberries, bran buds. He complained that he was dizzy. He couldn't sit up on his own, had a hard time just turning over in the bed. Yet he was getting grumpy about the food, or lack of it, which I took as a sign of improvement. I was desperate for any such sign. I went to The Second Cup in the main lobby to see what non dairy treats I could rustle up. I kept reminding the nurses: please give him his Sinemet at the right time and please don't send him any food with dairy in it. I had to remind them about that because I kept finding buttered egg salad sandwiches on his meal tray. They blamed it on the kitchen; they assured me they had told the kitchen he was not to have dairy.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">At that point I was still convinced he needed Sinemet and anything that interfered with it was bad. I thought it was helping, that without it, he'd be lost.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">On the fourth day or fifth day, I can't remember which, I arrived to find that he'd been moved at last to a medical floor upstairs. I found him there, all alone in a huge double room at the end of the hall nearest the elevators, very close to a nursing station, though not the nursing station in charge of his care. Signs on his closed door warned of respiratory infection and the need to gown, glove, and mask before entry, and that the patient was at risk of falling. There were receptacles just outside the door for used paper gowns, masks, and gloves. Each nurse who took care of him on their 12 hour shifts could be found sitting just outside his room at a computer station -- when that nurse could be found at all. Often, when I came in to see him, there was no nurse at that station or at any of the others down the hall. Was it the time of day? Were they helping other patients? Were they on break together in a staff lounge? Sometimes a student nurse would be sitting at that computer station, a young person who was full of enthusiasm for the nursing profession yet quick to say that he/she couldn't tell me how he was doing. The empty computer stations reminded me of the empty ticket wickets in old fashioned movie theaters: if you arrived after the movie started nobody was around to let you in.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">There was one visitor's chair in his room, one bed, though the place was designed for at least two. There was a computer hanging by a movable arm which also doubled as a TV and a phone system. Its use required payment of a hefty fee, one of many ways in which money is plucked from richer patients' pockets in our so-called everyone-is-equal system. The poor must recover in silence. I set it up for him but he didn't want the TV on, didn't want to speak with anyone on the phone because he was not in good shape. His dizziness was worse. He didn't like getting up, resisted it, yet he needed to in order to clear his lungs. They had to use a hydraulic lift, called a Hoyer, to get him out of bed. It's a sling system attached to a slim machine reminiscent of a small forklift. It is a gift to nurses who, in the past, often suffered injuries when lifting patients larger than themselves. When they used the Hoyer to transfer him, he looked like a giant baby carried by a mechanical stork. Not that they used it very often. It requires two people, a nurse and a junior trained in the art, and there were never enough of either on hand. So he was bathed in the bed. He was not shaved at all. He was not sitting up with his feet dangling over the side of the bed either, far too dizzy for that. His room seemed to be always dark, probably because the skies were heavy with winter snow, or maybe because my mood colored reality.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Day after day went by in the following way: I would work in the morning, bring probiotics, yogurt,bran buds, blueberries and newspapers to his room around 11:30, gown, mask, glove before going in. I would try to get him to eat. But he didn't want to. Even lifting his bed back so he could lie in a more upright position was enough to set the room spinning for him, as was being asked to roll over to be washed. He had a mild case of hiccups that wouldn't stop. And why did no one have an explanation for this constant dizziness? Was it the pneumonia? A remnant of the flu?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">A clever young doctor came in one afternoon while I was there and introduced himself as the resident. Lovely pale hair, cut very short yet feathery, a clever fellow with a certain sharpness, a good memory, very likeable, very quick, very to the point. He was focused on getting my guy better from the flu and the pneumonia: he was not really interested in Parkinsonian syndrome issues other than how they might slow his recovery, but said he'd ordered dairy free meals for him and the timely dispensation of the Sinemet. However, he wanted a speech language pathologist to see him too. Why? I asked. Well the granular vomit on the pillow down in the Emergency meant that he had aspirated food, which likely caused the pneumonia, and it is known that Parkinson's sufferers have trouble swallowing.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Hasn't had trouble swallowing in the past, I said. We both said it in unison. In fact, he had always been able to swallow large pills without water. He often took his Sinamet without water. And what's with this dizziness? And when are we going to have a physiotherapist in here to get him up and moving?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The physiotherapist soon appeared. She explained that she had to have an assistant with her to work with him, that this was due to the need for the Hoyer lift to get him upright and on his feet. She'd come back later with a helper.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Late in the afternoon, the speech language pathologist came in to see him with a student in tow, nice young women obviously committed and able. I watched their examination technique with interest. It involved observing his mouth carefully as he made certain sounds, as he stuck out his tongue. It involved feeling his neck as he swallowed certain foods they'd brought with them to test on him. At the end, the speech language pathologist told me she wanted to order a pureed diet for him. My mother has been on a pureed diet since her last bout of pneumonia, apparently also caused by aspiration of food, but my mother is 25 years his senior. That diet takes a lot of joy out of her life but her life has been long and joyful. His, on the other hand, is shorter and at that point, there was not a lot of joy to be found other than decent food. So I wanted to say no. Yet I had to acknowledge that his hiccups would not stop, that his lower lip trembled when he stuck out his tongue. I'd never noticed that before. A Parkinson's symptom, she said. (And when I looked it up online, I found this to be correct.) And what about his voice? she asked. Usually okay, though sometimes soft, I said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She was convinced he was also having difficulty swallowing and the hiccups were part of that problem. So I said fine, we'll do as you say. The pureed diet began the next day. It was basically warm goop. No fiber to speak of. Also, his meals were salt free because his blood pressure remained stubbornly high. Breakfast, lunch, and supper became a war between hunger and disdain for what was offered.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I came in one day to find him in another room, a double shared with another fellow who lived only a few blocks away. He pointed out the roof of his house which he could see from the window. My guy was officially no longer contagious, no more gown, gloves, mask. By then, many days had passed and still, no one had shaved him. I decided to try it myself because getting someone else to shave him apparently entailed finding a man with a royal name who also helped with the Hoyer lift. Hours went by while that man was unsuccessfully sought. Apparently there was a feud between him and my guy's nurse: this man busied himself elsewhere whenever she hunted for him. I shaved him in the bed.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The roommate was a kind fellow learning to walk with a walker, but he was able to make it from his bed to a table for his meals and take little jaunts down the hall, though he hated using the walker to do it. He told me he lived alone. I couldn't imagine how he was going to manage when he got home. Who would shop for him? Do his laundry? I made it a habit to bring him Tim Horton's coffee from the cafeteria because the coffee that came with meals was execrable, and if he had visitors who might bring him some I didn't see them. and it would have been very hard for him to make it to that cafeteria on his own.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">My guy had the bed farthest from the window. The curtain between them cut out all the natural light and the view of the the condo towers marching ever eastward across the city like stiltwalkers, towering over the historic neighborhoods. He and his roommate got on well together, looked out for each other. When he was discharged, he left my guy some razor blades and shaving creme.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Within days of the introduction of the fiber-free, salt-free, dairy-free (except for the trays that appeared with milk and butter on them), texture-free and taste-free diet, my guy's bowel stopped moving. Day after day, night after night, they laced him with every laxative known to medicine, to no avail. It didn't matter how many times I said, if you just get him off that food and get him up and moving, get him up on his feet, this problem will take care of itself. There was always a reason why not, usually because, if the physiotherapist was available along with a helper to work the Hoyer, my guy was too dizzy to cooperate. His main movement of the day involved being lifted in a sling from the bed into a large chair beside it, a chair with headrests and leg rests that could be adjusted. His life was collapsing into half a small room. He didn't even want to be wheeled in that chair down the hall to look out of a window with a different view. He found it hard to read, hard to focus. Everything was hard.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When they finally got him up on his feet for the first time, it was a Friday. He managed to take two steps holding onto a special walker with chest- high arm rests, with two people standing by in case he faltered. I had never seen him so helpless, so unable to fight. Yet I was enthusiastic about this breakthrough, thinking this progress would be followed up the next day. No physio on the weekends, I was told. But he'll relapse, I said, he needs to keep moving. Sorry, they said. Budgetary constraints.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But they weren't sorry, not really. He was a hard case to manage. He didn't belong in acute care anymore because he was no longer suffering from the flu or pneumonia--he was cured! Yet he was in serious trouble: the more he lay in bed without using his muscles, the more his strength drained away, the more his bowel forgot how to work.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When he was at his most lethargic, almost a month after he fell ill, a letter arrived in the mail congratulating him and his colleagues on being nominated for an extremely prestigious award: the letter asked, would he allow a film crew to come and shoot a film about the three of them? If so, they would all be invited to attend a major ceremony in Europe in about five months. The film crew would arrive in six weeks. I burst into tears though I rarely cry: I couldn't figure out why. This letter should have brought joy: it couldn't have come at a better time to lift him up, to remind him of his own value and, I found myself thinking, to make it clear to the doctors and nurses in this place that he is a person of significance, that he is worth saving. As soon as these thoughts crossed my mind I realized why I was so upset. They had been treating him like an old man with a degenerative disease who would inevitably decline, so it was pointless to push to get him back to where he was before he got the flu.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I took him the letter. It took him a while to take the meaning in. You've got to get up, I kept telling him. That film crew will show up in six weeks. We're going to do exercises while you're sitting in that chair, anything to get you going.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The physiotherapist provided weights to strap on his legs and hands. We did exercises twice a day whether he felt like it or not. He was soon able to work more often with the physiotherapist. He took three steps, then four. But then the weekend arrived again: no physio. By the Monday, he had relapsed once more.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The speech language pathologist didn't return to see him. The pureed, salt- free diet continued. The bowel stoppage continued as did the laxatives and even enemas, to no avail. My daughters and I asked to see the physician in charge of the service. We were worried: it was obvious he was sliding off the rails. We insisted that a neurologist come and see him because everyone seemed to assume that most of these issues were byproducts of Parkinsonian syndrome. We wanted a neurologist to confirm that or to make a suggestion about what to do. Though we asked repeatedly to meet the senior physician in charge of his care, that person never presented himself/herself. We left messages with the nurses and with the nursing station. We got no response to requests to meet or to discuss the situation on the phone.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So I badgered the nurse to make certain that the resident had checked him out. Finally, a young woman presented herself to me when I was in his room. She was younger than my youngest, had longish hair and a certain droll wit. She was taking care of him when the young man with the feathery hair was off duty. Both seemed to think this bowel business was of no importance. The young man had already told me it was a bad idea to insist on a neurological workup. "Too many cooks spoil the broth," he said. "You just want to get him out of here."</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I emailed our family physician to make sure she knew what was going on. She did. She was following my guy's test results electronically and was well aware of the physicians' orders. But, as I would later learn, she got no response when she tried to speak with the residents or the senior physician in charge. Finally, she went to the ward but couldn't find anyone to speak with in person either.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Things went on in this fashion for 12 straight days.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Finally, I had had enough. I was worried that he might have a bowel obstruction. I emailed a physician friend, very senior in her field, and asked if this was something about which I should fuss. She answered that bowel health is the key to health, so yes.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next day I marched up to his nurse as soon as she appeared at her computer station and said I needed to speak to the physician in charge or there was going to be a problem. She promised to send a message. She did. No response. A few hours later, I went to the nursing station. The young woman in charge at the desk assured me that she had left messages for the physician in charge and I would surely hear back at some point. Rage bubbled over into language. I used the word "negligence" to describe his care. Within a few minutes, the young female resident appeared at my guy's bedside, palpated his belly, significantly distended by then, said he was okay but she could order imaging to make certain there was no obstruction. Where is the senior physician, I asked her. Why do I not get my phone calls returned? And I am insisting that you get this guy off this pureed diet immediately.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">You'll have to speak to the speech language pathologist about that, she said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So I tried. But it was Friday afternoon. The speech language pathologist was not at her desk. I left a blistering message.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Monday morning, still no response. At 12 noon, she answered her phone.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Oh, she said, I got your message, but I'm just back from a two week vacation, I have a number of calls. I have to go and see him before I decide whether to stop the diet.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">You'll get him off that diet right now, I said, or there will be hell to pay. (What I was thinking was: how could she go off on a vacation without leaving orders to whoever was covering for her to check on how the diet was working? And if she had left such orders, why was the diet not withdrawn.)</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Something in my voice must have convinced her that she didn't want to experience hell. The diet stopped at dinner. But they sent him rice pudding at dinner--made with milk.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By then, all I wanted was to get my guy out of that hospital.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By then, all they wanted was to get rid of him too, and along with him, his wife and his daughters who insisted on difficult things like communication with the physician in charge of his care.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">For once, our interests appeared to be aligned.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But this led to the next problem: where could he go?</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The care coordinator explained there were several options, none of which involved any choice on our part. She had long since applied for him to be admitted to three different rehab places: Bridgepoint, which she didn't think would take him because he needed the Hoyer (she suggested that Bridgepoint, a brand new rehab place with state of the art equipment, might be short of Hoyers); or the rehab facility attached to Mt. Sinai Hospital, which is closer to our house; or, Providence, which is by far the most distant. It is in deepest, darkest Scarberia-- far to the east. Please don't send him to Providence, I said, it will take me 45 minutes or more just to get there. Sorry, she said, it all depends on who has a bed available first</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Providence is a Catholic facility that merged with St. Mike's and St. Joseph's Hospital in 2017. To get there I would have to cross many, many miles of the worst traffic in North America to visit my guy and watch out for his care.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I bet myself that Providence would be first to offer him a bed: I was pretty sure that since it is a part of St. Mike's, these folks could and would use their administrative weight to get him off their acute care floor and out of their hair ASAP.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I won my bet.</span></span><br />
<br />ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com1tag:blogger.com,1999:blog-8256131156058173921.post-81902385911334658222018-06-29T09:00:00.000-04:002018-06-29T16:11:27.688-04:00Field Notes from a Medicare Disaster: Ten<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbFMepdH4EF26B2Z2hYpI27KmHlSM0yDV42uL8-8dIp1KLZqFartdmXvna9zFcd7U9xnKLVcNANs1s_txnHtfcyNsnIlB0rRTVVdZzUrxpKlAUyf1RFCecGPCNPeyfD_-5fFEVDzG2q7Du/s1600/care-928653_640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="426" data-original-width="640" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbFMepdH4EF26B2Z2hYpI27KmHlSM0yDV42uL8-8dIp1KLZqFartdmXvna9zFcd7U9xnKLVcNANs1s_txnHtfcyNsnIlB0rRTVVdZzUrxpKlAUyf1RFCecGPCNPeyfD_-5fFEVDzG2q7Du/s400/care-928653_640.jpg" width="400" /></a></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Finally, at the end of the summer of 2017, it was time for the next appointment with the neurologist. He called my guy into his examining room as before. It took my guy a very long time to struggle down that long and twisting hall.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">He examined him with deliberate speed.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Look, we have some questions, I said. He seems to be getting worse quickly, not slowly. Parkinson's is supposed to go slow, right? </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Might be Mulitiple System Atrophy, he said.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Again, that diagnosis. But he offered no further information.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">He had a file in front of him which brought me to my next question.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I understand you had a conversation with our family physician?</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">No, he said.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My guy and I looked at each other. Our doctor had assured us she had contacted him. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">She said she spoke to you, I said. And she said she offered to provide you with research on clinical trials that might be helpful and that you were willing to have her do that. She also asked you to make referrals to Baycrest or Western.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Never talked to her, he said.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Someone had their facts wrong, I thought. Either she was not telling the truth, or he was prevaricating. Never mind, keep going, I told myself. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We understand that your major interest is epilepsy not Parkinson's.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">That's correct, he said.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Frankly, after the last appointment we were kind of disturbed that you told us to ask a nutritionist about going off dairy, and that you didn't seem to know there is a problem taking any proteins with Sinemet. We checked with our druggist and with others and it turns out that this has been known for many years. So we're not feeling too confident with you. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">His face took on a certain stony quality. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Have you made a referral to Western's movement disorder clinic? I asked. We asked you to do it last summer but they don't return phone calls when we call to find out where we are on the waiting list. It's been months and months. What can we do to speed this up?</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Not much, he said.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Well maybe I should go over there and harass them then and see if that works.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Oh I wouldn't do that if I were you, he said with the smallest of smirks. They don't like pushy people. That might boomerang.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But it's been more than a year, I said. Okay, look, wouldn't it make sense to refer him to someone who <i>is</i> interested in Parkinson's? I read about some interesting work going on at Sunnybrook for example, something with ultrasound. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Not for you, he said. (He was right about that. It was aimed at those with unstoppable tremors. My guy has none.)</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This was getting us nowhere. But I had noticed, when looking up this neurologist's background, that one of his colleagues just down the hall had written papers on Parkinson's and treated it. What the hell, I thought, ask for a referral to the colleague. Maybe this was about keeping a patient on the rolls of the partnership.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I noticed that one of your colleagues in this office is interested in Parkinson's. Would you make a referral to him?</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">No, he said.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Would you care to explain why not? I asked, rather sharply.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">No, he said.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I was so angry as I drove home that the blood sang in my ears. I got on the phone to our family physician. She assured me that not only had she spoken with the neurologist, her senior colleague had also written to him to ask that he make the referrals.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">That enraged me further. I decided I should make a complaint to the College. In order to do that, I needed to see whether he'd made a note of that phone call. I decided to ask his secretary for the entire file. When we finally got it, it was clear that he<i> had</i> had contact with our family doctor, but had scribbled into the file only after our appointment that he would refer to Western. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After I told a physician friend about our less than helpful neurologist, he suggested that to find another I should call the local office of the Parkinson's Society to ask for a list of Toronto-area neurologists specializing in the Disease or the syndrome. The woman who answered the phone was happy to give me that very short list. (It turned out that our less than helpful neurologist was known to her. An "ego problem" was all she would allow herself to say when I asked if she knew why he had failed to refer us to his colleague. She was wrong: it turned out that his colleague was on a research leave.) She suggested that if we were willing to drive to appointments in Mississauga and could get another neurologist to make a referral, a new guy was setting up shop there who was interested in Parkinson's. Or, we could try another man just north of the city. (We tried. Not taking new patients, his secretary said.) Within the boundaries of Toronto, however, we were out of luck, no one was taking new patients and the movement disorder clinics at Baycrest and Western had--still have-- extremely long wait lists. The wait list at Western is particularly bad, she said, but what is worse is that if you do get assigned to a neurologist there, and things do not go well in the relationship, you are not allowed to switch to another neurologist within the clinic.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Why not? I asked.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's their policy, she said. And they won't explain that policy either, she added.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Decisions are easy to make when you have no choices. We were not going to ask our unhelpful neurologist to make a referral to the doctor in Mississauga, a drive of a minimum of 60 minutes and on a bad day, longer, when he'd refused to make a referral to his colleague down the hall. We would just have to make do with him until we rose to top of the clinics' lists. We took comfort from the fact that we have a family doctor with a first class brain and a strong desire to help. She told us she would write to another neurologist, that friend of hers with a position in another hospital, who she hoped would take on my guy's care. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And in this fashion, more months went by. Physiotherapy, thiamine patches, more physiotherapy, some days good, some days not good at all. Christmas and Chanukah came and went. January was bitterly cold. One night, in the middle of that month, I woke to a loud thump and a call for help. He'd fallen out of bed. He couldn't get up. I tried my best to slide him to the top of the stairs so he could pull himself up using the banisters, a method I'd used in the past when he lost his balance and couldn't get up on his own. No go. He was burning up. He was confused. At my daughters' insistence we'd already gotten him one of those devices to wear in case of a fall. They called 911.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The paramedics appeared at the door ten minutes later. They took his temperature, his blood pressure, measured his heart rate. His heart was racing, his temperature was way up there, and so was his blood pressure. He's always had low normal blood pressure.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">What do you want to do, Miss, one of them said.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">What do you suggest? I asked.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I think he should go in, he said.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And so they bundled him up onto one of those chairs that bump down stairs, and took him out into the bitter cold.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Down to St. Mike's.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Again. </span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-51994247827216519472018-06-22T08:12:00.004-04:002018-06-22T08:12:55.922-04:00Field Notes of a Medicare Disaster: Nine<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Two years is a long time to wait for treatment when you are over 70, especially if neither of your parents made it to the eighth decade. What kind of system asks such a person, any person, to wait two years for help?</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">A recent survey of Parkinson's sufferers and their health professionals by the Parkinson's Society of Canada found that my guy's just-you-wait experience is not confined to Toronto, where the population is large, or even Ontario, where it is stretched thin over a vast area that neurologists don't often visit. It is pretty much the same across the country. Interestingly enough, the health care professionals surveyed had much harsher views of the system than the patients. The survey makes it clear that waiting six months to a year for the initial diagnosis by a neurologist--necessary to get other public system help-- has become normal. Waiting another year to get expert treatment has also become normal. Few mental health specialists are made available in spite of the fact that Parkinson's Disease is believed to also cause anxiety, depression, hallucinations, and worse. ( I wonder now whether it's the Disease that brings on these issues, or the drugs that are supposed to alleviate it, but that is another story.) Patients with movement disorders benefit from intelligently designed exercise aimed at retraining the misbehaving brain (either by recruitment of stem cells to replace dead dopamine-producing cells, or by teaching clever workarounds) yet the public system is stingy when it comes to paying for physiotherapy. More than 40% of patients have to pay for physio out of their own pockets. They also pay for walkers, bath aids, medications, and wheelchairs, though, with the right diagnosis and the approval of a local health integration network, the government of Ontario will pay 85% of the cost of a "necessary " wheelchair. (Just don't say you mainly plan to use that wheelchair outside. Then they won't fund it at all. Yet a wheelchair assembled with the right parts to fit a particular individual can cost up to $5000.) People with Parkinson's often have trouble swallowing and trouble with making their speech intelligible. Yet speech language pathologists are rarely offered by public systems to patients at home. In other words: a system that was supposed to give all Canadians equal access to publicly funded and excellent medical care has taken equal access off the table. A patient with money will be much better treated than a patient with none. Having to wait two years for proper care cannot be called excellent treatment by any measure.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The results of this survey were published on the Parkinson's Society website just before Parkinson's Month--April. ( As T.S. Eliot tells us in 'The Wasteland,' April "is the cruellest month.") You know a disease has clawed its way to the top of Charity Mountain when it gets its own Month.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And yet it would not be fair to say that the system failed my guy entirely. When the hospital got ready to discharge him, the home care system kicked in. I had experienced it with my parents, and had not been impressed. My mother had been assessed--the word they use--and reassessed, again and again after each of her visits to the hospital, starting with the first time she fell and broke her hip. And after each assessment and care period, her file would be closed. Each time she was admitted to hospital again, and about to be discharged, another care coordinator would call and asked me for permission to visit my mother who is not really able now to give informed consent. Each time this happened, the same questions would be asked. Help was assigned to my mother on the basis of a doctor signing off on a request for home care, because the doctor was convinced that care was needed. But the publicly-funded home care organizations do not take a doctor's order as anything other than the start point. They decide what will be supplied. My mother was eventually allowed 45 minutes a day of help to shower in the morning and be put to bed at night. But soon there were disagreements between the person who provides the bulk of her care daily, paid for privately, and the publicly supplied personal service workers who came and went. I got phone call after phone call from my mother asking where the care worker was who was supposed to help her get to bed at night. Finally I figured out that it wasn't that they were always late, though that's how it seemed. In fact, the care coordinator had changed the schedule without telling us. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It also concerned me that strangers came in and out of her suite every day, that care coordinators I had never met asked me questions about her mind and her body that were invasive. Was this an irrational response on my part? Yes and no. We are all trained from childhood to believe doctors and nurses will behave ethically--we trust that they will hold onto our embarrassing secrets. Mainly we retain this trust even when one of them goes off the rails and has sex with patients, or, in the case of Nurse Wettlaufer, kills eight while failing to kill six more. After all, they are professionals who can be sanctioned by their peers if they fail to do the right thing or actively do wrong. (<i>Theoretically </i>they can be sanctioned: in Ontario the colleges charged with these duties tend to be awfully gentle when it comes to punishments.) But what about personal service workers? What about social workers and occupational therapists and physiotherapists? These are the people who staff the home care system. These are the people we rely on to deliver care that's cheaper than a bed in a critical care hospital whose beds are way too full of the aged and infirm. Personal service workers are not members of a professional body. For the most part, they are men and women--often new immigrants to Canada-- earning just above minimum wage. My Mom's care and comfort had been in their hands for a while. And now it was my guy's turn.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">First, a hospital physiotherapist visited him in his hospital room and took him off to a large room on the same floor that functions as a gym. Her task was to get him moving on his own again, to teach him a few tricks that would help him get out of chairs and find ways to walk when his muscles would not obey. Movement disorders are highly variable, but in general either the muscles do things the patient does not want ( such as shaking continuously and uncontrollably.) or, the muscles do not obey because something goes wrong with signalling, or feedback mechanisms, leading to problems walking, balancing, swallowing, etc. He did not have tremors, but he sometimes found himself momentarily unable to move forward, or sideways, or backward, unable to distinguish when he was fully upright or leaning. We have a lot of stairs in our house. The physiotherapist had him practice on a rudimentary staircase in the gym. He suffered waves of what he described as unsteadiness from time to time, but he did well on the stairs. He could use the banisters to pull himself up and to balance on the way down. Then an occupational therapist talked to him and to me about our bathroom setup at home, the distance from bed to bath, the number of stairs, our kitchen. When we finally got him home, strangers called to make appointments to make sure we'd told them the truth. The care coordinator came to assess, followed by an occupational therapist who came to assess, and who told us to get a bench for the bath. She also ordered a different kind of walker for him that was more suitable for a man of his height. A senior physiotherapist came to assess: he decided that my guy was entitled to six sessions at home, the maximum offered.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Physiotherapists who looked young enough to be straight out of university came to the house once a week to help him. They were nice. They were sweet. But after the sixth week, he was on his own. Yet he still needed help. We had been given a list of private physiotherapy places in the hospital. We found one close by, and paid for weekly sessions for most of what remained of that winter.Then a friend diagnosed with Parkinson's flew into town to go to a physiotherapy clinic that specializes in Parkinson's. We recognized the name of the place: it was on the list given to us by the hospital physiotherapist. As our friend reported to a mutual friend, One Step Ahead Mobility was terrific. We made an appointment for an assessment. The physiotherapist who did it turned out to be the same one who'd given us that list in the hospital. It was very expensive, but we figured it was worth the money, and for a time, it really helped. We also heard about Dancing with Parkinson's, a charitable program run out of a community church which charged only a nominal fee for an hour long program.The theory behind it is that people with Parkinson's do better if they move to music and especially if they work in a group.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">What can it hurt, we thought. To keep moving, you must keep moving, and better to move with music, right?</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We signed up.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> By then we were beginning to adapt to the problems of disability. I learned to ask about bathroom locations in restaurants before making a reservation, about whether there was a ramp or steps ( though he actually preferred stairs, the ramps made him dizzy on the way down). But over the course of the next year, we went out less and less, going mainly to physiotherapy sessions, Dancing With Parkinson's, to the homes of friends, or to see our children and grandchildren. Getting in and out of the house was hard. Getting in and out of the car was hard. We had a transfer wheelchair for when he was in real trouble which he loathed. He far preferred to struggle with that walker, which could turn into a mini wheelchair if need be. We were beginning to get a sense of what "worse" meant. Walking had become much more difficult quite quickly though we had been told that Parkinson's is a slow-moving disaster. His symptoms seemed to get worse month by month. We phoned the neurologist to ask what to do when the freezing moments became so severe and the unsteadiness so profound that standing became a problem. Take another Sinemet, it's fine, we were told. The daily load went to four a day, with a fifth taken if needed, and often we timed it to twenty minutes before a physiotherapy session on the theory it could help him move well enough to get value from it.</span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">My guy had no appointments with the neurologist until the end of the summer of 2017. He was unsteady enough, and overheating was such a concern, that when I brought out a new book that June he stayed home. It would have been too warm for him in the pub where the launch was held. All the while we waited to hear from one of the movement disorder clinics that they finally had a spot for him. We waited in vain.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We continued to plow through the literature online, especially theories on causation. We found papers by an Italian neurologist who believes that Parkinsonian symptoms are caused by the inability of afflicted patients to absorb thiamine, a B vitamin, through the gut. Thiamine is vital for many neurological functions. The neurologist had published papers on the experiments he'd done on his own patients. He gave them mega-doses of thiamine by injection and saw very significant abatement of symptoms. He insisted that careful history-taking had shown him that most of his patients had experienced gut issues long before their movement problems appeared.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">My guy had experienced gut issues before his movement problems appeared. There was something like hope in this!</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I read the papers with excitement--though I had a niggling concern that the Italian neurologist had used no controls in his experiments, so his work was anecdotal which meant it could be right, but it could also be dead wrong. Look on the bright side, I said to myself. Can't hurt to try the thiamine.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I wrote to the neurologist: I asked him how much thiamine we needed to get into my guy's bloodstream to affect his symptoms. He told us we needed 1200 milligrams per week. I realized that it would be a hard struggle to get to our doctor's office weekly for injections, so I decided to look for an alternative delivery system. And I found it. Mosquitoes hate the smell of thiamine so it is now available in patch form to ward off mosquitoes as a green alternative to DEET. I could find no one in Canada making thiamine patches but we found a Colorado-based company selling them on Amazon and ordered a few direct from the company.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It seemed to work. He improved.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The Dancing With Parkinson's sessions were held in a large auditorium but the building was old. No air conditioning. As the summer days warmed up, my guy was less and less able to participate. I would do errands while he was dancing, only to come back to find him collapsed in a chair, unable to continue. He was overheating. One day he was so wobbly I had to push him from the building on his walker because he could neither stand nor walk. We stopped going.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Though we used the patch carefully, his symptoms became worse. He also had an allergic reaction to the patch glue.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I wrote to the Italian neurologist to ask if we should up the dose. I explained that his symptoms seemed to be getting worse rather quickly.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It might be Multiple System Atrophy, he wrote back, and for that you need a much larger dose of thiamine, about ten times larger.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And then he stopped writing back.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">What's Multiple System Atrophy? I wondered.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We went to see the family doctor for a regular appointment. We need to get moving on referrals, we said. It's been 18 months since the diagnosis and we still haven't heard a thing. And what's Multiple System Atrophy? She explained it's exactly what it sounded like, many systems failing all at once. She offered to have the senior physician on her staff write to my guy's neurologist asking him to do the referrals on an urgent basis. She offered to try and find us another neurologist, in particular she would try to get a friend of hers with a position in another hospital to take over his care. She also said she would speak with our less than helpful neurologist herself and offer to provide him with research about interesting clinical trials that might be appropriate.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Fine, we said.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But it was not fine.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">In fact, it did not end well at all. </span></span><br />
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ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-20525432142735423592018-06-15T09:00:00.000-04:002018-06-15T09:00:02.131-04:00Field Notes from a Medicare Disaster: Eight<br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonEPoBfI4aIPt4A3aUZfo1VpktvnWF-qVN0SoU-41GsiQvKv8F0JmayYeOBelGN-s9Iw5e5rSSgJU9FgPCn2NWV_rUcBRpehRhfMsI7J1MGEmOX26uO1IQ87S8ub_WiikgViMLZqAdALn/s1600/ankle-2253057_640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonEPoBfI4aIPt4A3aUZfo1VpktvnWF-qVN0SoU-41GsiQvKv8F0JmayYeOBelGN-s9Iw5e5rSSgJU9FgPCn2NWV_rUcBRpehRhfMsI7J1MGEmOX26uO1IQ87S8ub_WiikgViMLZqAdALn/s400/ankle-2253057_640.jpg" width="300" /></a></span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I told myself that I must have misheard when the neurologist described the narrative arc of Parkinsonian syndrome with one word--"worse." No one talks to patients like that, I said to myself, not in my father's day, and certainly not now when devotion to patient-centered medicine is claimed by every hospital seeking donations and governing party hunting votes.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">But I'm a reporter. I have trained myself over many years to listen for that quotable line and remember it. I knew that's what he'd said because a single word reply to a reasonable query was so unexpected that it instantly lodged in my brain -- in both our brains, as I soon confirmed. My guy heard it too.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Maybe this was his way of expressing his irritation at all the Google-derived questions he had had to field from patients. If he'd asked, I would have explained that we were painfully aware that much of what we'd gleaned about Parkinson's Disease and Parkinsonian syndrome came not from scientific papers but from websites written by disease advocates. I knew that their claims are not always supported by what careful thinkers would consider actual <i>facts.</i> Sometimes they derived from their scientific advisors' interesting relationships to drug companies and medical device makers.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">A magazine story I did on osteoporosis taught me these lessons. In the mid 1990s, osteoporosis suddenly became the new disease of the month, an epidemic about to unfold, we were told, unless....Various osteoporosis society websites claimed that, without treatment, almost half of North American post-menopausal women would suffer from fractures. But good news! A new scanning machine had become available capable of measuring the density of human bones, and--oh happy day-- two drugs were available to bolster that density and thereby hold osteoporosis at bay. Hormone replacement therapy was already used for this purpose. Merck was bringing out an old drug for this new use, a bisphosphonate.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I became interested when almost all my female neighbors, friends, and relatives of a certain age mentioned to me over a short period that they had been sent by their doctors to have their bones scanned and, as a result, were told they were osteopenic. They were told they would likely develop osteoporosis and suffer nasty fractures without treatment. Some had gone on hormone replacement therapy, some were trying the new/old drug. That so many women were told they were at risk of fracture seemed odd to me. I asked my Dad how many osteoporosis-induced fractures he had seen in his 50 plus years of family practice. Hardly any, he said. When I told him that an osteoporosis society in the US was claiming that as many as 50% of post menopausal women were at risk of such fractures, but there was a new drug to treat it, he just laughed. Of course my Dad had a love/hate relationship with drug companies. Their salesmen took up space in his crowded waiting room in the hope that he would try their samples on his patients and then prescribe them. Sometimes he did, if he thought it helped. More often he told the salesmen to go away.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">In the course of doing that osteoporosis story, I interviewed a senior orthopedic physician/scientist who led the scientific advisory board of a Canadian osteoporosis society. He had helped establish the standard for the prevention and treatment of osteoporosis. The theory of osteoporosis disease at that time was that it resulted from low bone density. Osteopenia, supposedly the precursor to osteoporsis, is still defined as low bone density when measured by the new scanners.The standard of care he and his colleagues proposed was that the best way to prevent osteoporosis was to increase bone density with a bisphosphonate or to prevent its decline with hormone replacement therapy. It was asserted that these steps would save millions of women from harm and save governments and insurance companies millions too. However: bisphosphonates have serious side effects and can do serious harm if not taken properly. Taking one properly by mouth involves sitting up straight for at least one half hour in order to avoid damage to the esophagus. Studies done later determined that bisphoshonates can induce unusual fractures in about 10% of the people who take them. Hormone replacement therapy was soon found to be less than harmless also: it increases cancer risk. But in the mid 1990s, most major hospitals quickly acquired the new bone density scanners and population-wide screening for low bone density took hold fast, just like population-wide scanning by mammography for breast cancer, another sad story of practice getting ahead of science.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">The more I dug, the more I learned that the theory of loss of bone density as the cause of osteoporosis was built on sand. Medical researchers studying how bones replenish themselves told me they were still in the dark about fundamental processes and were not convinced that low bone density necessarily causes fracture. Bone architecture and bone density are not the same thing and bone architecture, they thought, might matter more to bone health. In addition, epidemiologists were just beginning to do the necessary comparative studies of different populations to establish what normal bone density is, never mind how it relates to fracture risk. The bone density machines on offer had been calibrated by using data from one population (young women from Minnesota of Scandinavian descent). Their average bone density became the norm. Bone density is known to decline with the drop-off in sex hormone production as people age and is known to decline much more rapidly again when people enter their 90s. But in the middle 1990s, various epidemiological studies were just beginning to show that normal bone density differs from healthy population to healthy population, from region to region, and even from season to season. I interviewed a leading osteoporosis specialist in Montreal who had just organized a huge, Canada-wide study which had already shown that those most at risk of fracture were not post-menopausal fair-skinned, fair-haired women, as had always been assumed, but Quebecois men over age fifty who had worked as laborers. He had been forced to fund his work from grants (with some strings) from drug companies making bisphosophonates because the federal government wouldn't give him enough to get the job done. By then, most medical journals had begun to acknowledge that funding of science by drug companies with an interest in the result tends to skew results. Yet, as he said, what choice did he have? The work had to get done. And it was the same story with the physician/ scientist who had helped set the standard for treatment. When I'd asked him, almost as an afterthought, where the bulk of his research funding came from, he'd shocked me when he said 100% of it came from drug companies.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">When the magazine began to fact-check my story, the Editor found herself on the receiving end of threatening phone calls from one very unhappy advertiser, a drug company. She published anyway. Not long after, she moved on from that job.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That's why I asked that neurologist so many questions. I wasn't satisfied that the Parkinson society websites reflected good science. When the neurologist didn't appear to know that Sinemet absorption is interfered with by proteins, and that dairy is a particular problem, I thought the websites had led us astray. My guy was really happy about that. He had always put milk in his coffee and in his porridge. He likes yogurt and he really, really likes cheese. Daughters One and Two had convinced him, given what various articles and websites had to say, that he should give up these favorite foods to improve Sinemet's action. For months he had been unhappily eating cheese substitutes made from soy (with a list of additives as long as your arm), and yogurt made from coconut oil. When we got home from the appointment with the neurologist, the first thing he did was put milk in his coffee. He had real milk and real yogurt on his cereal the next day.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">That same morning, I went to the drugstore to pick up a prescription. I was standing at the counter waiting for the druggist to fill it when it dawned on me: who better than the druggist to tell me whether proteins, especially dairy, interfere with Sinemet's action?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">I'll have to check, he said. He went to work on his computer, typed in a few words, came back to the counter. Yes, he said, you need to be careful with all proteins.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Is that new information? I asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Doesn't appear to be, he said.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">By the time I got home with this news, my guy had already indulged himself with some cheese without regard to the timing of his Sinemet. The next day, he had a very hard time moving. We went back to the non dairy regimen, and we timed his drug intake with care.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">And I also decided to look up the neurologist's publishing history. I found no papers by him on Parkinson's or on Parkinsonian syndrome. I did find old papers by him on various other neurological subjects, in particular, epilepsy.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">On our next visit to the family doctor, we double checked the druggist's statement with her. Proteins and Sinemet, not good together, right?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Oh sure, she said, that's been known for thirty years.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Please, we said. We think we need to find another neurologist. Can you write a referral to one of the movement disorder places? Western? Baycrest?</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">She could, but she thought they had pretty long waiting lists.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">How long? I asked.</span></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: small;">Two years, she said.</span></span><br />
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<br />ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com6tag:blogger.com,1999:blog-8256131156058173921.post-32093117609872071192018-06-08T09:00:00.000-04:002018-06-09T18:18:55.042-04:00Field Notes from a Medicare Disaster: Seven<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUmj26hT-2R7rAdxxbZaypCuv7B_XKN9TGtR7e6UMkEV9p1-f7kj5KjP7ugPMbgJ94smlVUQXt1SXXuopIswylGl_-OOWqzh-anO3b25CuKbdB_7WSeyrd9583LXttsgvGGoKX_JuuHIB1/s1600/seats-waiting-room-9585.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1068" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUmj26hT-2R7rAdxxbZaypCuv7B_XKN9TGtR7e6UMkEV9p1-f7kj5KjP7ugPMbgJ94smlVUQXt1SXXuopIswylGl_-OOWqzh-anO3b25CuKbdB_7WSeyrd9583LXttsgvGGoKX_JuuHIB1/s400/seats-waiting-room-9585.jpg" width="400" /></a></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Whatever-it-is finally had a name--Parkinsonian syndrome. We kept asking about the difference between Parkinson's Disease and Parkinsonian syndrome: the answers we got described differences so insignificant as to be no difference at all. "A difference, to be a difference, must make a difference" is a rubric I learned long ago when I was studying political theory: medical practitioners might reflect on that when naming q syndromes with the same title as a disease. Parkinsonian syndrome seemed in most respects similar to Parkinson's Disease. Certainly the front line treatment was the same--Sinemet--followed by a few other dubious sounding concoctions, also offered by Big Pharma, if Sinemet proved ineffective. (How could it prove ineffective, therefore leading to these other options, when a positive response to it is the way the clinical diagnosis is confirmed, you ask? Sorry: no answer.) It was disturbing to learn that none of the drugs on offer were said to alter or even slow the course of Parkinson's, or its same-name syndrome. In addition, these drugs' side effects were known to cause problems, serious problems. Not that anyone spelled those problems out to us, as you will see, other than to offer a prescription for constipation. Was constipation a byproduct of Sinemet or of the disease itself? No one explained.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Here is what we--he, Daughter Number One and Daughter Number Two and I--knew going in. We knew a person who has Parkinson's Disease: a man named Bill. Bill is the father of one of Daughter Number One's public school classmates. He was diagnosed at around age 50. We knew of others who had it too, such as Andy Barrie, formerly the morning voice on CBC Toronto's Metro Morning radio show. Barrie had been forced to retire early due to Parkinson's. We knew he had endured a surgical treatment called Deep Brain Stimulation which is done at Toronto's Western Hospital and is said to alleviate symptoms: heard him discussing it one morning on Metro Morning. (Later I would wonder how he got into that program so quickly: more than two years after my guy was referred to Western's movement disorder clinic, where Deep Brain Stimulation and other methods of coping with the disease and its syndrome are practiced, we still await acknowledgement, let alone information about, where he resides on their waiting list. They don't return phone calls of inquiry. )In addition, my sister- in- law's father had been diagnosed with Parkinson's Disease. However, my sister-in-law's father, an internist, soon realized that this diagnosis was incorrect and properly re-diagnosed himself with another neurodegenerative disease significantly different from Parkinson's. Nevertheless, he too took Sinemet, large doses of Sinemet, which caused numerous problems and yet did not prevent him from becoming so immobilized that he required helpers plus a lift to get in and out of bed. We also knew that Canadian actor, Michael J. Fox had been diagnosed with Parkinson's Disease very young though it is considered to be a disease of aging. We knew he'd set up the Michael J. Fox Foundation to raise money for research. The Foundation maintains a website where things may be learned. On this site I learned that Parkinson's Disease afflicts men more than women, though recent studies of prevalence and incidence are few and far between. Allegedly, the median age of onset is about 60. The incidence is said to be 1 in 100,000, therefore relatively rare. Yet over the next 12 months, two of our female acquaintances, plus one much older male relative, would also be diagnosed with Parkinson's Disease. In that same period no one we knew was diagnosed with heart disease, which is much more common. Parkinson's may be less rare than we suppose, or its incidence is changing. Regardless, if it is a disease of ageing, as the Baby Boomers enter their final laps around this good Earth, the actual number of sufferers is going to explode.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">My guy's symptoms were not like theirs, which is why, we were told, the diagnosis of Parkinsonian syndrome applied to him. It means that his symptoms are atypical. Yet those with the Disease also had symptoms unlike each others'. According to the websites we visited, atypical is typical of Parkinson's. For example, our friend Bill had serious tremors of the hands and arms, could not stand erect, had an immobile face and speech so profoundly altered he was often difficult to understand. Yet he walked quite well. Andy Barrie had voice issues but his speech was perfectly understandable though his voice timbre changed. Michael J. Fox displayed jerky, spasmodic movements of the head and neck, arms and legs. Our older relative, formerly an avid golfer, moved very slowly and developed the facial mask. The two women friends have hand tremors. Essentially, my guy is atypical among the other atypicals. His voice remains essentially normal, although sometimes it is too soft, and his face is as mobile as ever. He displays no jerky movements, no tremor of the hands, no pill rolling movement of the fingers, another symptom that appears on the symptom lists posted on various websites, along with difficulty swallowing. He swallows just fine. He had trouble maintaining his balance, which seemed to get worse with the Sinemet, not better. He had trouble walking, which also got worse with the Sinemet. Soon he had freezing moments too. Also, instead of a slow onset of symptoms, my guy went from not quite right to quite wrong in no time flat, especially after that second fall.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">As I read through various websites, I was fascinated to note significant differences between those based in the US and those based in Canada. On a Canadian Parkinson's website it clearly states that no specific cause is known, no genetic component is known either, though interesting genes have been identified in association with it, and there might be a higher risk for children if a parent has it. On a US Parkinson's website, considerable space was devoted to possible causes, including traumatic brain injury and poison by pesticides, not mentioned on the Canadian sites. What are we to conclude from these differences? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Wikipedia explains that both Parkinson's and various Parkinsonian syndromes are problems derived from the death of dopamine-producing neurons in an area of the brain known as the <i>substantia nigra</i> (translation from the Latin: black substance) which itself is part of an area called the basal ganglia, which processes movements, automatic and otherwise. The <i>substantia nigra</i> is divided into two parts which have different functions and employ different chemical signal systems, one involving dopamine (which, when released, gives pleasure as well as transferring signals and so has a role in addictions as well as movement) and GABA which inhibits/disinhibits -- in other words, stops/starts motions that would otherwise be continuous. The dominant theory is that it takes a long time for a person to be affected by the loss of dopamine producing neurons in the <i>substantia nigra</i>, that by the time symptoms appear, 80% of these cells have died. How do we know this? Apparently from the study of animal models -- rodents in which the symptoms of Parksinson's have been induced by injecting them with certain chemicals that destroy these cells. They are "sacrificed," meaning killed, and dissected, and neuron loss estimated. Human studies of the brain are only done after death on those diagnosed with Parkinson's who donated their brains to science. But the human studies, like the rodent studies, are problematic: dead donors tend to be older, and the brain shrinks with age so it is possible the loss of these neurons attributed to the disease is actually simply a product of the aging process. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">In other words: the more we read, the more it became clear that Parkinson's and Parkinsonian syndrome are names for a grab bag of symptoms which overlap. Some symptoms don't appear to fit the<i> substantia nigra</i> neuron theory. What does the death of dopamine-producing neurons have to do with the disturbed sleep and hallucinations which afflict some who have Parksinson's? Or are these symptoms the product of the drugs, such as Sinemet, which contains levodopa, a molecule that supposedly is a dopamine precursor. In other words, does Sinemet cause this symptom? The loss of the ability to smell is also listed as an early symptom of Parkinson's. But what does loss of information from the olfactory bulb have to do with the dying cells in the <i>substantia nigra</i>? Other symptoms listed on the Mayo Clinic's website include a stooped stance. One one site I found an image of a man with shoulders slumped forward which is exactly the way my guy stood before his second fall. It was this posture which first aroused my concern. But he doesn't stand like that anymore. Why?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">As I read some of the symptom lists I found myself raging at my computer: why in hell had that first neurologist ruled out Parkinson's when my guy clearly displayed some of those symptoms? If he hadn't ruled it out, and if my guy had been started on treatment early, might he have avoided those terrible falls and concussions? On the other hand, one symptom that appeared on everybody's list excessive sweating? Yet my guy no longer sweats at all, which causes him to overheat and droop like a flower on a hot July day. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Eventually I gave up on websites and went after recent scientific papers. I found that there was interesting work going on at the University of Saskatchewan, in association with Harvard, which proposed introducing stem cells into the brain to replace those dying dopamine producing neurons. There were other trials going on elsewhere. We thought we should try to join a stem cell clinical trial. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The Canadian guidelines on treatment showed that the drugs on offer have dire side effects. All pointed out that when taking Sinemet one must be careful to leave about an hour between ingestion of the drug and ingestion of proteins or iron because both interfere with its absorption. Some sites suggested that those who suffer from Parkinson's should avoid dairy altogether and load up on carbs until the last meal of the day. They also mentioned that unexplained weight loss was a symptom of Parkinson's. So we became religious about the timing of drugs versus protein and vitamins.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Soon these websites prescribing diet changes </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">led me down a series of rabbit holes suggesting other causes for Parkinson's, causes not shown on Parkinson's Society websites. I found papers by an Australian physician who thought he could show that Parkinson's may be caused by a massive die off of certain bacterial colonies in the gut (which interact with neurons in the brain), due to an infection by H.pylori. When my father was still practicing medicine, H. pylori was discovered to be the major cause of stomach ulcers. Instead of surgery, the treatment became an antibiotic. The Australian physician determined that many of his Parkinson's patients had had major gastric problems before their Parkinson's symptoms appeared. He found that many had had H. pylori. There is an easy test which shows whether a patient has been exposed to it. After treatment with a complex round of antibiotics, his patients showed marked improvement in their Parkinson's symptoms as the bacterial colonies in their guts became more diverse.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I soon found papers showing that the bacterial species in the guts of people suffering from Parkinson's are less diverse than the bacterial colonies in the guts of healthy people. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Bob's your Uncle, I said to my guy. We need to get you tested to see if you ever had an H.pylori infection, like back when your gut was going nuts a few years ago. If so, there's an antibiotic regimen to try.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I then got in touch with an expert on the behavior of bacterial colonies, a man I had interviewed for a book called SMARTS, one of the leading geneticists of his generation. He had argued that bacterial colonies, as opposed to single bacteria, display intelligent behavior and communicate with each other. I explained that I wanted to know what a normal distribution of bacterial colonies in the human gut might be. I explained why I was interested, asked for papers to read. He responded by saying he had just been diagnosed with Parkinson's himself. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By then, we had found a new family physician associated with St. Mike's. Luckily for us, she had been a student of neuroscience before she went into medicine. We explained at his first appointment that we wanted to explore several alternatives to standard Parkinsonian syndrome treatment. We explained about the stem cell trials. If the dopamine-producing neuron death theory is correct, we said, it seemed to us that stem cell replacement therapy might be really effective. She said she knew the man leading the stem cell work at University of Saskatchewan and would write him to ask if my guy could join a clinical trial. When we explained the H. pylori thesis, she also ordered an H.pylori test. It came back negative.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It was about then that we finally got our first appointment with the neurologist assigned to his case at St. Mike's that February. The appointment was early in the summer. By then, we had read that we needed to be careful to leave an hour between eating proteins and iron and taking Sinemet. By then, he had gone off dairy. By then, we had followed the H.pylori trail to a dead end but were pursuing the stem cell ideas. By then, we had also heard that the right exercise guided by a physiotherapist knowledgeable about Parkinson's could help recruit stem cells to the <i>substantia nigra</i> to replace dopamine producing cells that had died off. We were also interested in Dancing With Parkinson's and Boxing With Parkinson's. We hoped for better guidance from the neurologist.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The neurologist came into the waiting area and called his name, then turned and walked down the long twisting hallway to his examination room. My guy was exhausted by the time he got there. He asked if I could sit in. Sure, the neurologist said, but there was no chair for me so I leaned against the wall. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The neurologist is a silver haired man of about 60 who wouldn't get a second look on a golf course. He dressed like a golfer. That kind of shirt. Those kinds of pants. But he was as sociable as a prison guard. I was shocked by how far he deviated from my father's methods of greeting patients to make them feel comfortable. There were no jokes, no friendly questions. I expected him to offer his hand to shake. Nope. Finally, after my guy made it into a chair, he had him get up again, and show him how smoothly he could do it. He seemed very pleased with his speed. He felt his arms, looking for rigidity, asked him to move his fingers in that pinwheel fashion.When he was done, I shot a look at my guy who had given me permission to ask the questions. He gave me the high sign to begin. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So we have a few questions, I said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Such as, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Well, we've been told that he will do better without eating any dairy and so we've been doing that.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Don't ask me questions like that, he said. I'm no nutritionist.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But we read that it's a problem to take Sinemet with protein, it inhibits absorption of the drug.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Oh, he said. First I've heard of that.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Well that was surprising as most of the websites went on and on about it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So we are going to do physiotherapy if you think it will help. Can you make recommendations about that? And can you refer us to a movement disorder clinic? The one at Western? Or how about Baycrest?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I've heard exercise is good, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That response seemed very vague to me. As vague as his answer on dairy. Yet I charged on. So the other thing we're very interested in is stem cell therapy, I said. We know there is a clinical trial that's going to happen soon in Saskatoon.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Where's that? he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">At first I thought he was joking. Then I realized he wasn't, he didn't know that Saskatoon is the location of the University of Saskatchewan which he appeared to be unfamiliar with as well.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">My guy and I exchanged looks. His eyes said, don't bite. Be nice. We might need this guy.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So I explained where Saskatoon is, and that it is the location of the University of Saskatchewan where a senior neurosurgeon/neuroscientist was working up a clinical stem cell trial in association with a group from Harvard. He seemed to have heard of Harvard.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So have you been following the papers suggesting that stem cells might replace dead dopamine-producing cells? I asked.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">No, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">If you're interested, I could send you the links.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Not really interested, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By that point, I was having trouble locking down my temper. He seemed to find my questions faintly amusing but not worth considering.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I decided to switch direction and ask him something he could easily answer.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Can you please tell us something about the narrative arc of this disease?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He looked blank. You know, I added, what we can expect. Like can we travel? Can he get on a plane for business if he has to?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Oh I wouldn't cross any time zones, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Why not?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Confusion, he said. But you could go to Florida if that's what you're asking.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I wasn't asking about Florida. I had Europe and the Middle East in mind. So I asked him again what we could expect as the disease took its course. I was thinking he would say something like, you can expect a gradual decline, a gradual worsening of symptoms over the course of several years...</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Here's what he said: "Worse."</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And with that, the appointment was over. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-73043592046201227002018-06-01T09:32:00.001-04:002018-06-01T16:38:15.009-04:00Field Notes from a Medicare Disaster: Six<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He was lying in a new room. His hospital bed was shrouded by a privacy curtain which made it feel like we were camping in a big tent. It was about ten days after that second fall. I was sitting beside him, on his left. The curtain was against my back, his TV/computer unit was above my head. The MRI had been done, but no report had been issued, or at least nothing had been shared with us. I had yet to meet most of the residents, let alone the senior physician, who were attending to him on this floor, a medical floor. One of my daughters had met the leader of his so-called team and she wasn't pleased. She thought he failed to listen, she thought he was disinterested in history, she thought he was faintly contemptuous, definitely dismissive. She said: "you won't like him" with the authority of someone who knows me well. She'd already heard from more than one nurse that no one else liked him either. Not only was his bedside manner wanting, but his treatment of staff was definitely not enjoyed by all. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The more I try to remember the details of this particular day, the harder it is to pull them up, yet I have read that specific memories are located in specific brain cells, and if you retrieve them over and over you will always recall them easily. Of course if you fail to do so they will vanish, sliding away under the surface of your consciousness like the Lady of the Lake dragging down Excalibur. I was hard at work on a project at the time, so my attention was divided, which may explain part of my difficulty. I was committing lots of other things to memory. But part of it surely has to do with not really wanting to know what was wrong with him. The fact is, I didn't want to face it, I just wanted whatever-it-is to be over and normal life to resume. I may even have deliberately forgotten things that I didn't want to hear. Thus I am troubled by almost-memories, half forgotten, half remembered. I don't know if they record reality or are confabulations. Like smoke, they curl around corners, they connect to other moments, they obscure more than reveal. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">This presents a problem. I build the stories I write detail by detail. I need to know that my memories are accurate or I can't describe things in a way that I can rely on. If I don't believe what I write, no one else will either. That's why, when I'm working as a journalist, I make notes, not just notes about what people say in an interview, but notes about how they said it, what I said in response, what the day was like, descriptions of the meeting place, their manner of dress, the news on the radio, the things that ran through my head but which I did not say out loud. When you write such things down, the hand delivers them in good working order to the memory cells of the brain and when you write them again, as you are shaping a story, they become so well embedded you've got them for life. I can still remember details of my encounter with that famous television producer, Aaron Spelling. I can tell you what his production office looked like, what his secretary said when I first arrived at her desk, how his wife decorated their Bellair house, the collection of strikers she showcased in her living room, the color of the new stretch limo she gave him for his birthday, how the man who answered their front door wore a gun strapped to his chest over his white shirt, how a group of executives from ABC lined up according to their rank on the couches in his office in a story meeting. These events occurred back in 1978, but I still own them because I made many, many notes.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But I did not make notes in that hospital room while waiting, heart in mouth, for news about him and our future. So, no matter what I do I can't remember what his room looked like. I can't recall who was in the other three beds, if anyone <i>was</i> in those other beds. I<i> think </i>I know that his bed faced north, that the window was to the left, that his blanket was striped in two shades of blue. I also remember the light bar above his bed had a pull chord, that his bed was closest to the hall, that the bathroom was on the opposite side of the entry, that it had a paper dispenser and evil-smelling soap too awful to use, that the towels were kept in a locker opposite that bathroom door. The room was darker than usual: he had his light on. Was it one of those dark and dank winter afternoons, night-for-day? Was one of my daughters there with me, or was she waiting outside? These facts are just gone.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But this I do recall. This you can rely upon. A young man, very tall, very thin, with sneakers on his long, narrow feet, wearing brown pants and brown shirt and a wide leather belt, walked in the door. He called my guy's name. He had a bag slung sideways across one shoulder. He had dark curly hair, olive skin, a brilliant smile. He was extremely pleasant. He almost glowed with the joy of inquiry. I know that joy, my guy and I have spent our lives pursuing it, revelling in it, so I recognize it in others, both of us do. We both glowed back at him.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He explained he was a fourth-year neurology resident. Would we mind if he did an examination?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Be my guest, my guy said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The resident flattened his bed, had him lie on it, felt his arms and legs, bent the arms, asked him to push hard against each of his hands with each of his own. "Strong," he said, surprised. Then he asked him to make the fingers of each hand touch its thumb, one after the other, quickly; asked him to follow his finger with his eyes without turning his head; asked him to make his index finger touch his nose, first the right hand, then the left (he had trouble doing that, more trouble on the left than the right); got out a weird tuning fork thingie from his bag and set it thrumming against my guy's legs and feet and asked him to report if he felt something or not. This laying on of hands went on for quite a while. Then he sat him up on the side of the bed with his legs dangling and brought over the bedside table. He asked him to repeat a number of words; to repeat complex sentences. Then he pulled out a sheet with figures on it and spaces. He asked him to copy the drawing of a cube on that sheet, and to draw a clock face saying 2:30; and to link a series of letters and numbers in the pattern shown, to name the three animals depicted on the bottom of the sheet. He timed him as he worked.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When I looked over my guy's shoulder, I could see it was a very rudimentary intelligence test which might reveal basics about pattern recognition and reasoning, vocabulary, motor control, and perhaps a hint of visual/spatial reasoning. My guy, some years back had created a brilliant invention to optically record vast streams of information using parallel lasers. That invention was based on visual/spatial reasoning: his was exceptional. I looked at the clock face he'd drawn and realized he hadn't drawn it correctly, that the arrows and numbers were wobbly, which fit with his shrinking signature. He seemed to have lost some fine motor control.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He was asked to rhyme off as fast as he could nouns beginning with the letter "f". He was timed. He had some trouble doing it quickly, though the words he came up with were interesting because he had a very wide vocabulary. The resident asked him to count backward from 100 by 7s. To my astonishment, my math whizz guy who, when putting together multi-million dollar budgets for a television series could ballpark the total <i>in his head</i> faster and more accurately than his production manager could work a calculator, had a few moments of difficulty. Then came another memory test, five words he was asked to repeat and hold in his head which he would be asked to remember later. I can still remember four of those five words easily two years later. They are nouns for: a part of the anatomy, a type of building, a textile with a certain texture, a particular flower, a colour. He had trouble remembering them even as they were given to him, and ten minutes later he could only dredge up three, even when cued.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">This whole exercise astonished me. I could see it might lead to false conclusions. I wanted to say, wait, wait, you haven't asked questions about who he is, what he does, how his brain works when he is healthy, he just whammed hell out of his head so you cannot draw conclusions from how he reacts today. I learned later that this test is called the Montreal Cognitive Assessment and leading neurologists do not consider it definitive of anything much, yet it seemed to matter greatly to this resident.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I intervened. I filled the resident in on who he is, what he'd done with his life, the number of falls he'd had, the number of concussions. Did he listen? He seemed to, but now I wonder.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But I will give him this: he was thorough. This was the first neurological work up I had seen since the neurosurgeon's a few months before. It was subtly different. This one was much more prolonged, more oriented to memory, verbal ability and patterning. We both thanked him for the amount of time he had spent, the care he had shown. He glowed again and said, thank you, my patients matter so much to me, I love what I do.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">So what is it I have? my guy asked the resident.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The team leader will discuss it with you, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Well, we'd like to know what was found on the MRI, I said. We'd like to have a discussion with the neurosurgeon about that. I don't know why but I found myself hoping now for normal pressure hydrocephalus as the diagnosis. I was pretty sure it was a better diagnosis than whatever it was that this young man was considering: there could at least be things done about normal pressure hydrocephalus.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next day, I got to the hospital in the morning. My guy was sitting up in a chair when I came in. I took a chair beside his bed. The curtains were open. At a certain point, an older man with grey hair who did not introduce himself came in with others following him, another young resident, a nurse. I introduced myself. He barely acknowledged me. We think, he said, that this is Parkinsonian syndrome and there is no way we can do a blood test or an X-ray to confirm it, the diagnosis is made clinically and our resident has come to that conclusion with which we concur. We want to give you Sinemet (levodopa/carbidopa, the standard medication for Parkinson's, a replacement for the dopamine no longer being produced by the cells dying off in an obscure part of the brain, which is the reigning theory of the root of Parkinson's). We want to see if you respond to it. This is really the only way to make the diagnosis. If you respond to it, we'll know what we've got.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I did not focus instantly on the phrase Parkinsonian syndrome, or ask how it differs from Parkinson's. I asked instead: what did the MRI show and what does the neurosurgeon say? We'd like to hear his opinion too please: that's why we're here.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He didn't like that. He said he'd ask the neurosurgeon to drop by. They started the Sinemet then and there. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The neurosurgeon came later that afternoon. The MRI, he said, showed nothing untoward, yes shrinkage, yes enlarged ventricles, he might have ordered the spinal tap, but he was stepping back in light of the neurologist's diagnosis. Much better to take a pill than cut into your brain, he said, when we said but wait, we like you, we trust you, can't we stay with you? He would not be taking the case, he said, a neurologist would.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I think now that I smelled politics in the air, hospital politics, disagreements behind closed doors. But maybe I'm confabulating. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The next morning, I came in earlier than usual hoping to catch the senior physician on his rounds. I found my guy sitting in a chair. Getting out of bed and into that chair had been easy that morning. The day before, difficult. Physiotherapy and an assessment by an occupational therapist had been ordered. The physiotherapist made sure he could walk using a walker and that he could climb stairs because our house is full of them. The occupational therapist made sure the walker was the right height. Later that day, the senior physician came in again. He had my guy get up out of his chair. He was thrilled at the ease with which he stood. See, the Sinemet is clearly working, he said. So we're right. We'll connect you with a neurologist who will manage your care.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Later still, after I had left for the day, a senior neurologist associated with the hospital came around to see him. He behaved the same way the senior physician had when introduced to Daughter Number Two who happened to be there--a blank stare, complete disinterest. "You're not going to like him," Daughter Number Two said. But he had agreed to take my guy on, he was associated with the hospital, his office would set up an appointment, and that was that.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We left the hospital a day later with a prescription for Sinemet. We were perplexed. The diagnosis he had been given had been ruled out previously by another senior neurologist.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">How could that be? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That's when we started giving Google a serious workout.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-51334205125938964242018-05-25T09:56:00.000-04:002018-05-25T09:57:05.277-04:00Field Notes from a Medicare Disaster: Five<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpEx4221cpkvYRHzFq0qTinFXLclzg4Zgh4OrH4vq2iZ0UkXPeKUp7o25TJWZwL-cbzH_VD70-zJ5ovgaJLTtzXgKdB7iym_NiZtj0rTG-bPEByz5Xhe64JAPQbfMiUGjoMYniRJLIiF9i/s1600/nerve-cell-2213009_640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="360" data-original-width="640" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpEx4221cpkvYRHzFq0qTinFXLclzg4Zgh4OrH4vq2iZ0UkXPeKUp7o25TJWZwL-cbzH_VD70-zJ5ovgaJLTtzXgKdB7iym_NiZtj0rTG-bPEByz5Xhe64JAPQbfMiUGjoMYniRJLIiF9i/s400/nerve-cell-2213009_640.jpg" width="400" /></a></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">While he was waiting for a bed in the neurology ward, St. Mike's put him in a double in an older wing of the hospital where the rooms are small, the ceilings low. The view out the window was not worth the effort to pull up the blinds because there was nothing to see but a parking lot covered in mounds of grey slush, the rest of nature having been destroyed by construction or in hiding from winter. And yet we know, we all know, that a view of even one tree from a hospital window, even a dormant tree, makes people heal faster. Funny how hospital designers have been slow to get that message especially since the ancient Greeks were aware of it and used green, peaceful environments as part of their cures. He shared his room with a young man who had cystic fibrosis. Every few hours slapping sounds issued from the other side of the curtain between the beds as a machine pounded the man's back to break up the mucus. The room was always a little dark. There was no room for visitors. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">For the first few days, he really wasn't himself. Confused. Inward. The result of concussion? No one said so, but he'd hit his head with a great deal of force, so how not? He was having a lot of trouble walking, a lot more trouble than he'd had before this second fall, and getting out of a chair involved serious effort. The nurses (who changed constantly) kept asking if he was a diabetic and if he took something for heart disease and high blood pressure. No, I said, his blood pressure has always been low normal, and he controls the balance of good/bad cholesterol with the Mediterranean diet and exercise. The hospital, on the other hand, was feeding him a diet of overcooked vegetables, canned fruit, soggy fish, peanut butter hydrogenated with transfats, salad dressings with complex stay-fresh-forever chemistry, whitish bread. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">All he takes are anti-histamines, vitamins, and probiotics to keep his digestion in order, I explained to one nurse after another.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Each seemed surprised. I wondered why but forgot to ask why. It only occurred to me later that there might be different information in his hospital records.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He's very fit, except for the smoking, I always added, as if to say, take care of this man, don't throw him away because of how he appears to you now, over 70 and having issues with movement. If anyone inquired further, I explained that though he still smoked, his lung capacity had been huge until whatever- this-is got in the way of playing tennis. It had since sunk down to a mere normal level. I knew that because a respirologist had checked his lung function the previous fall as part of the ruling-out process. That doctor had ordered tests, then insisted he bring the test results on from the lab, on paper, to his hospital office, instead of the lab making an electronic transfer of the data. When he got there, the doctor's office was locked. In other words, he was made to walk miles to see a physician who wasn't there though his inability to walk well had been given as the reason for the referral. When I came to pick him up that day, he was so exhausted he found it hard to rise from the bench outside the hospital's back door without help. When I complained to the respirologist that that is no way to deliver patient-centered care --unless killing is part of cure-- he had had the grace to apologize.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">By this point, we, his family and his friends, had become ghosts haunting Google. Each of us had theories about what ailed him. These reflected our biases rather than hard information, because we had none. Well, we had <i>some</i>. At least we thought we did. We <i>knew </i>he didn't have a middle ear problem. We <i>knew</i> he didn't have Parkinson's. Both had been ruled out by serious people, senior specialists. But what did he have? My bias was that this whatever-it-is was the result of concussions in his youth, made worse by the concussions he'd had lately. The kinds of symptoms he displayed were familiar from the sports pages of the newspapers as reporters wrote about pro athletes donating their brains to science so that physicians might learn what concussions had done to them. Because I thought this whatever-it-is could be the result of sports injuries, I also did a little reverse conjuring trick, a magical flip turn. The idea that sport might have led to his problems turned to the notion that proper exercise could be the cure. I was/ am firmly convinced that exercise can/could work miracles, would at least hold at bay this whatever-it-is, and, if done well could make him better. Maybe it could cause the brain to recruit new stem cells to old tasks, replacing the functions of cells that might have been damaged. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Getting better was my goal. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It is known that a human body at rest too long will not do well. I kept asking the nurses: can we get a physiotherapist in here to help him stand ? Can we please get him up to walk today? I kept a civil tongue in my head for the most part, but I wanted to shout: get him out of that chair! A human being is a symphony of interactive systems and the brain, an organ of many layers with many networks, is intimately entwined with all the rest. It is not the grey and squishy home of an unseen puppet master, a homunculus who makes the body dance to his tune. Lately I had begun to read about the long feedback loops between brain networks and the very complex populations of microbes living in the gut, that microbes affect brain function, in some cases direct it. Microbiologists have been creating a whole new view of where humans reside in the web of life, showing that there are no boundaries between human beings and the rest of the world because we are all interpenetrated by microbial life. Through that lens we look like complex machines that exist to support the vast array of microbes within us, on us, and all around us, microbial life that has been on this planet since its earliest days, evolving, adapting, invading, changing, whereas we are mere parvenus. Microbial cells outnumber the human cells in a human being by orders of magnitude, and these microbes communicate with each other, compete with each other, interacting with the human cells around them as they do so, serving us yet serving their own interests first. They communicate with what are called signals. The information they convey is in the form of particular molecular arrangements moving in and out of this cell or that, provoking action and reaction along various pathways.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">This man of mine had been the first person to teach me to think about bodies as interactive systems. Way back in the early 1970s when he was still a journalist, he covered scientists working on something called biofeedback as it was being studied in leading edge labs from Harvard to MIT to the University of California. He understood very early the importance of, and the applications of, general systems theory to biology and ecology. He watched it seep into various branches of biology which came late to advances in mathematics and computation, though great mathematicians such as Alan Turing spent years studying patterns in biological systems. He and his partner did a series of radio and television documentaries exploring the meaning of biofeedback mechanisms that tie one system to another, making it possible for them to work as larger systems together, to become a whole. A housemate who heard him expound on this field a few times too many, came to the breakfast table one Saturday crowing that he should pick up that day's <i>Globe and Mail </i>where he would find an article that finally explained biofeedback clearly.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"Did you notice the byline? "my man responded. " No? Didn't' think so. I wrote it."</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">belief in <a href="https://www.sciencedaily.com/releases/2018/05/180523080214.htm">the vital importance of physical activity</a> came from my father too. He had became convinced early in his career that even a modicum prevents a host of chronic diseases, a view that has since been backed by shiploads of science. He had been a jock: as a young physician and surgeon just returned from the War he had put all that aside as his patient list exploded thanks to the baby boom and the polio epidemics of the 1950s. He had almost killed himself with ceaseless work and no exercise. He made himself so ill that he was forced to spend months at the Mayo Clinic trying to sort out whether or not he had heart disease. When he was sufficiently assured that his ticker was just fine, that he had overwork-and-no play -disease, he came home determined to change. This is when handball, racquet ball. and weekly golf, along with a winter vacation, became central facts of his life. At a certain point, the creators of Participaction asked him and his friend Dr. Howie Nixon, a physical education professor at University of Saskatchewan, to start a Participaction pilot project in Saskatoon to see if, by the use of clever advertising ( did you know that the average 30 year old Canadian is only as fit as the average 60 year old Swede?) they could inspire the town to get moving. My Dad put his heart and soul into it. Saskatoon did get moving. And it did affect rates of obesity, heart disease, diabetes.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">While Daughter Number One agreed that he needed to move, she was still convinced that he suffered from normal pressure hydrocephalus, or perhaps something even worse, multiple system atrophy. Movement would not fix either one, though he might get better from the first. When I looked up the various symptoms, I could see she had a point, but without the MRI, without the spinal tap, we had nothing definitive to go on.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Daughter Number Two, a vegan, who has used food to treat her own health issues, thought that whatever he had might have been caused by a variety of toxins. She wanted to take a different kind of action, to change his diet to something anti inflammatory which she was convinced would alleviate symptoms. Cut out dairy, she said. Cut out meat. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Both sent links to relevant articles. His television production partner and long time friend sent links to other articles. Soon I was drowning in articles, yet still stuck in an information desert. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After about a week, they </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">moved him to the neurology floor. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Late one day, they sent him for that MRI.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span> <span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Once again, we waited. </span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-81494957259378864632018-05-18T18:08:00.001-04:002018-05-19T09:31:28.173-04:00Field Notes from a Medicare Disaster: Four<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It was the Ides of February, 2016. Toronto was as grey and damp as an old dishrag. I was working hard on a new project that involved prying politically embarrassing information from the death grip of the University of Toronto and the even more secretive bureaucrats of the Department of Canadian Heritage. When I am on the trail of a good story, especially a hidden one, I tune the rest of the world out. I didn't hear him when he called the first time. I did hear a bump, but there are always bumps and thumps in our old house, usually emanating from its ancient radiators. I heard the second call though, because there was an edge to it, a determined calm stretched tight over panic like emotional plastic wrap. Daughter number two tells me I was on the phone with her when I suddenly said, gotta go, Dad needs help, and hung up on her. I have no memory of that. I do know that when I ran down to the kitchen, I found that he had fallen to the floor, couldn't get himself upright.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We had lately had a few of these moments of radical awkwardness, though nothing as serious as his fall at the cottage the previous summer. He had been finding it harder and harder to get his feet under him after a stumble unless he had something big, like a door, or a grab bar, to pull himself up on. I am still strong ( not as strong as in my early twenties when I held back, with one hand, a tipped over 200 pound light stand about to squash my puppeteer colleagues in the middle of a show). Yet I found it hard to help him get up. He couldn't seem to cooperate with me. It wasn't as if I was trying to move dead weight, it was that his weight seemed to have a confused mind of its own working against my best efforts.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Being faced with my inability to do something always annoys me, and so I was annoyed. I looked for someone to blame-- him. How the hell had he managed to fall in our small kitchen which has so many things to grab hold of within easy reach? Like the counters? Like the fridge?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I don't know, he said. I don't know why I fell.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Somehow, I wrestled him up and onto a chair, which is when I realized his neck was red with blood, and there was a red splash on the white fridge too, and ohmigod, a long smear across the floor. What the hell, I yelled, and then deliberately forced myself into a different state, a semblance of calm, because I also noticed, finally, that the bottom half of his left ear was dangling by a shred of skin, just hanging there beside his neck as his blood ran bright and free. My father had been reliably cool in the face of frightening things such as this, including: eruptions of blood from my friend Ian's broken nose (Dad actually reached over and pulled Ian's nose sideways, back and forth, to make sure it was broken: yup it's broken Ian, he said); or, when I passed out during an asthma attack on another kitchen floor (he'd kept adrenaline in the fridge for just such an occasion). His capacity to cloak himself in deliberate calm helped make him a good surgeon. Yet it wasn't natural to him so he had developed interesting methods to soothe himself when faced with unexpected disaster --such as things going south in the operating room. He told me that he just stepped back from the operating table, sometimes turning his back on it altogether, and then he hummed or sang a jaunty tune. Didn't the OR nurses find that strange? I asked. They never mentioned it, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I don't sing when I'm scared. Instead I grab hold of my voice and wrestle it down from wherever it's perched to something steady and low which settles me as I hear myself speak.That allows me to step away mentally just long enough for thoughts to gather, so I can organize what to do and in the best order. I heard myself say, in a very neutral voice, hey, your ear doesn't look as pretty as usual, which is too bad because I've always liked your ears. And then I did what I'd learned in first aid class, age 16, from one of my Dad's partners, Dr. Noel Doig. He too had been a leader of the Doctor's Strike. He had immigrated to Canada to get away from Britain's National Health and spent many hours explaining to his Saskatchewan colleagues exactly why the National Health didn't work well, exactly what had to be avoided in Saskatchewan for doctors to do their jobs properly. He was a bright, ethical, empathetic man with musical talent: he built a clavichord in his basement one winter just for fun. And he had a talent for teaching too. He told a memorable story to my first aid class which encapsulated a simple way to slow a rush of blood pumping from a limb He described what happened when an older woman fell down on a London street and a varicose vein in her leg burst. A good Samaritan came upon her in a rapidly expanding pool of blood. He tried to engineer a tourniquet from his necktie, but she was saved by another bystander who knew better, who simply lifted her leg above the level of her heart, then applied pressure. Remember, he said: first, elevate the limb, then apply pressure, then get help. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Elevation is not really applicable to a half- ripped off ear because, unless a person is already lying down, it's well above the heart. So I grabbed a pile of clean dish towels from a drawer and applied pressure, then replaced my hand with his while I called 911.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Why are you calling 911? he asked.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Because your ear is half off and there's a lot of blood pouring down.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Just get me a bandage. I'll be fine, he said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">You need someone who can sew it back together, I said. I mean I could try, but you wouldn't like it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The paramedics got there very fast.They crowded into the kitchen. He told them what he hadn't told me, that when he fell, he'd caught his ear against the freezer handle on the bottom half of the fridge. All 220 pounds of him had landed on that ear. No wonder it was torn. Had he also concussed himself? Again? He was confused, I thought. So, probably. But his eyes tracked as they should according to the paramedics.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But we'd better take you in anyway, they said, and bundled him out the front door and down the front porch steps on one of those clever, step-climbing chairs.He kept trying to get his arms loose from the straps, even when they transferred him to a wider gurney. They weren't happy about having to push that gurney across our flagstone path to the curb-- well, we call it a path because once upon a time it was a path, but now it's a mess of broken stones heaved in all directions by frost. It's old. Like us. Not good Miss, they said, as if they knew they'd be coming back again, and again, and I'd better reno the access route before the next time.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Daughter number one made her way over to the St. Mike's emergency after the ambulance brought him in. She was not happy, in fact she was really, really concerned. I tried to assuage her fears. Not so bad, I said, just a tear, they'll sew him up and that'll be that. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We waited for quite some time for a doctor whose specialty included sewing ripped ears back together. I would have thought any emergency doctor could do that, but apparently that is not the case. An otolaryngologist is required.We waited, and we waited, jammed in a a cubicle.When said specialist finally appeared, at least ten hours after the call went out, he was moved to another room down the hall where he could be sewn up, a room I mainly remember as large. The emergency doctor in charge, a nice woman, told me he'd be able to go home after it was done.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Daughter number one pulled me out into the hall.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We need to have him admitted, she said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We do? I said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Yes we do, she said. He keeps falling, and we need to find out why.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But the emergency doctor said he could go home, I said. And his MRI is scheduled for next week.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I don't know why I argued with her. Maybe I wanted to hold at bay the idea that something was seriously wrong. After all, that doctor who discharged him from this very hospital in the summer had insisted everything would be fine, all he had to do was count to ten after he stood up and before he took a step. The neurosurgeon had been concerned, yes, but not certain what exactly the problem was.Thus the MRI.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The MRI is scheduled for the middle of the night, she said. They could do it while he's an inpatient much more easily. What if he goes home and falls again?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Good point, I said.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Please let me handle this, she said. Just let me do this, because you won't use the right words.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">A fraught moment of decision: should I hand over my role as the adult person in charge of his care to a daughter who had been a child herself seemingly moments ago ( okay, okay she had two children of her own, but still...). Age makes itself known when a parent finally recognizes that her children have acquired skills not readily at hand in her own bag of tricks. I remember my Dad still deferring to my grandmother though he was a doctor with three kids and a huge medical practice, while she barely spoke English and her education was of a different order altogether. He considered her the smartest person in the family. I wanted to go to a convention in Vancouver with a youth group I belonged to. I'd had a bout of asthma that had almost killed me and he thought it wouldn't be safe. I appealed to her. Are all the other kids going? she asked him. Yes, he said. So she goes, said my grandmother, and that was that, I went.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Daughter number one had by then spent several years working on policies related to physicians and their work. She knew the jargon and the rules; she knew which phrases would resonate, which policies could be referred to, trigger words in effect. I know how to ask sufficiently probing questions to expose a system's failures but that is altogether different from getting systems to behave and do what they're supposed to. What we needed was relief from a patchwork of appointments and incoherent information with no responsible physician to make sense of it. We needed a proper work-up in the hospital by someone who had access to all the gathered evidence and who could get more as needed. Okay, I said. Do it.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She took the emergency room doctor out in the hall. I know she explained the history, what remained to be explored, that an MRI had been ordered by a staff neurosurgeon in this very hospital, scheduled to be done in a few days, that there had been a serious fall requiring hospitalization only a few months before, and several little falls since, and now this--yet there was still no diagnosis. She pointed out the danger of letting him go home, the liability that could ensue. I kept out of it as ordered, although that phrase of hers, you won't use the right words, had really got under my skin. After all, if I am anything at all it is a purveyor of correct words.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When the two of them came back from their huddle, I was told that he would be admitted after all, it was just a matter of finding a bed.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Is that how it works now? I said to daughter number one, after the doctor went away. Does one have to know trigger words to get the
correct response, to get reasonable, responsible treatment? Is that what this system has come to? That smacks of Israel where you need <i>protectzia</i> to get you in the right doors.<i> </i></span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><i>Protectzia</i> means exactly what it sounds like. You know somebody who knows somebody important who can take you out of that long line up with a wave of the hand. It means there is no real equality, only differing degrees of power.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It's not about <i>protectzia</i>, she said, it's about the right words.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But it's the same problem if only a few of us know what those words are. Equality of care for all, regardless or bank balance or personal relationships, was the foundational concept underlying Medicare, wasn't it?</span></span><br />
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ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-9112959878005466652018-05-11T10:15:00.000-04:002018-05-12T12:19:37.294-04:00Field Notes From a Medicare Disaster: Three<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">You would think that I would remember the exact whereabouts of that neurosurgeon's office, wouldn't you? I mean, come on, he was the focus of hope. Yet that detail is ensconced in some brain cell no longer accessible. I know this: it was either in St. Mike's itself, on a floor with plain-as-Jane offices, or, it was across Queen Street in the Medical Arts building. ( It is perilous to stop a car at its front door so as to deposit a disabled patient for his appointment, because its front door is actually a catty corner door. Yet it must be done, otherwise a halt and lame patient is forced to cross one of Toronto's busiest streets.) The neurosurgeon's office was off a dark, narrow corridor that also served as a waiting room. There were people sitting on hard chairs in various states of misery waiting their turns. I found myself watching the gait of every patient who walked past me. I felt a ridiculous spurt of envy if they walked normally. Even more disgusting, I actually consoled myself with the poisonous certainty that their brains must have gotten up to some other malicious though invisible trick because no one comes to see a neurosurgeon about something trivial.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">When his name was finally called, at least three quarters of an hour late, which had prompted a desperate bathroom hunt, he walked down the long corridor shuffling his feet, not quite upright, not quite balanced, shoulders rolled forward. I had by then decided that not being able to walk well changes everything -- from social life (one only goes where one knows there is a bathroom close by) to basic personality (walks for pleasure are over, so there are no more hi-how-are-ya-what's-happening conversations with neighbors which is a punishment for a man with a buoyant personality, in this case one who had also made a lifelong habit of saying hello to every street person, asking if they had a place to sleep, and offering advice on how to find same). I'd watched my father, another sociable man, deal with being house-bound too, and it had been very hard. There were outbreaks of cabin fever, arguments over nothing fought with passion. It was osteoarthritis that crippled him. For much of his adult life he'd been an avid golfer and a ferocious handball and racquet ball player, and before that, he'd been so devoted to hockey and football that he'd flunked first year university because he was on both of his school's teams. He golfed until his late 80s -- until he made the mistake of looking at X-rays of his back and shoulders which made clear exactly how much damage osteoarthritis had done.That's when he finally permitted himself to take a cortico-steroid-- prednisone--to damp down the inflammation and suppress the pain. It's a powerful drug with nasty side effects, such as thinning skin which bruises and sloughs from the smallest pressure. His hands and arms soon sported bandages and gauze. As soon as he looked at the X-rays, the pain became something he could no longer ignore and golf was over. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Yet for quite a while longer he was still able to walk with his usual gait, that happy martial rhythm with a hop-limp on the right leg thanks to the hip replacement after he retired. And he was still able to do his PT-- push-ups and sit-ups and stretches-- every morning. He explained that it hurt, but that he had to do it. If he didn't keep moving, the arthritis would become so bad he'd be unable to walk, period. That day finally came after he ruptured an aneurysm that ballooned out of his aorta. He was 89 by then: when the aneurysm burst, his blood pressure collapsed and he dropped like a stone to the kitchen floor. The young emergency surgeon who took care of him informed him of the survival probability of the repair surgery -- it's like 10% Sam, he said, what do you want to do? Figuring 10% was better than zero, Dad said go ahead, do your work. That meant cutting him open like a fish to be filleted, or as he liked to say, from his gullet to his zatch. His recovery was long and tortuous. After that, he only walked short distances in his condo using what is called a rollator, and settled into a wheelchair at the very end. He stayed sharp, though. And so he never stopped berating himself for failing to diagnose his own aneurysm. He'd felt a thrumming in his belly while doing push-ups before it burst, he told me. He should have known.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">But what would he have done about it, I wondered, if he had put two and two together before that rupture? Would he have asked for surgical intervention? Or would he have thought: I'll just leave it be and hope for the best. That question had haunted me as the appointment with the neurosurgeon came closer. I'd been reading the science papers on normal pressure hydrocephalus which we'd asked the neurosurgeon to investigate and which the CT scan would shed light on. The treatment is a shunt inserted into the brain which redirects the overly abundant cerebral spinal fluid down through a tube into the gut where it is harmlessly absorbed. But about 40% or these surgeries fail to alleviate symptoms and brain surgery is not for the faint of heart -- in other words, for this high risk, only 60% of patients get any reward. Worse, the papers I read asserted that there is no reliable way to judge which patients will do well after this surgery and which won't. The CT scan would reveal enlarged ventricles, yes, and enlarged lateral ventricles have been correlated with unsteady gait and other hydrocephalus symptoms. But just having enlarged ventricles is insufficient to make a firm diagnosis: tapping the spinal cord and measuring the fluid flow is a more reliable determinant. Yet a spinal tap has risks of its own serious risks. What if the neurosurgeon recommended it? What if something went wrong with the tap, never mind the insertion of the shunt, and he ended up worse off than before yet without conclusive information about why his movement was disordered? What if he couldn't think as well as before? He makes his living with his brain. His intelligence is central to who he is, or so I thought at the time. I had just finished writing a book on the nature of intelligence. In the course of researching and thinking through what I'd learned, it had become increasingly clear to me that intelligence is displayed by all living things, right down to the smallest bacterial cell, because it is a function that emerges from interaction with a dangerous world. Further, there is no dividing line between brain and body, mind <i>is</i> body.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The neurosurgeon sat with his back to the door, at a very ordinary faux wood desk. There were two unremarkable chairs for visitors. No one around here was wasting the public's pennies on decor. He had his computer on. The screen displayed a cross sectional image of a brain, except it looked like a top down view. I could see the ventricles, white snakes among black and white structures, and big gaps where the brain seemed to have pulled away from the skull. The image was so clear I almost fooled myself into thinking I understood it, that if I looked closely I might spot weirdnesses --lumps, bumps, tumors-- though I had never seen such a scan before, so why would anything about it look right or wrong to me? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The neurosurgeon was dressed in scrubs again, but this time, instead of a surgical cap, he was wearing a do rag on his head, a red one. I didn't even recognize him until he spoke, because it had been months, five to be exact, since he came to that hospital room and asked us to get him this CT scan. If by chance there had been a tumor growing in the brain shown on the screen before him for all that time, it could have acquired significant size by now and this CT scan would not show it. He pointed to the ventricles on the screen, and said that they did look enlarged, but not a great deal bigger than they should have been, and he said there had definitely been shrinkage of the brain, though that was consistent with age and didn't matter much. (I was familiar with the case of a man in France who had a CT scan done late in his life which revealed that half his brain was missing entirely, probably always had been missing, yet his performance on IQ tests had always been perfectly normal and he'd been able to live well and hold down a job with no trouble at all.) The neurosurgeon asked more pointed questions, asked him to stand and walk for him, felt his arms, tested his reflexes. Finally, he said he needed more information before he could diagnose because there were many possible reasons for unsteady and increasingly awkward gait. We had already ruled out one possible cause --a middle ear issue. He'd been referred by his fill-in family physician to an otolaryngologist. When he walked into that man's office, where the patients spilled out into a corridor with no chairs and the wait was several hours in duration, the otolaryngologist had taken one look at how difficult it was for him to walk to the examination chair and said, with alarm, I can see by your walk that this is not an ear problem, this is a neurological issue. But we asked him to do the appropriate tests anyway. The results had been forwarded to the neurosurgeon. They were all negative.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Look, the neurosurgeon said, let's see if we can find out more with an MRI. I'll order one for you, you can do it here in the hospital, you won't mind if the appointment time is like three in the morning, right? That way we can get it done faster.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I wanted to protest but I kept my mouth shut. I was getting better at keeping my mouth shut. Getting him up for an appointment in the middle of the night, in the winter, was going to be no fun whatsoever. But what choice did we have? If you must stand in a hall for three hours because there are no chairs left in the waiting room due to the fact that your otolaryngologist's secretary books patient appointments at five minute intervals, you learn to suck it up and do it without protest. If that doctor orders tests done at a place many miles from where you live, in a lab located in a suburban strip mall that looks at best iffy as a place where decent scientific evidence may be gathered, you go and submit to their requirements anyway, because what other choice is there? If a hospital neurosurgeon says the fastest way to get an MRI done in his hospital is to get up in the middle of the night, even though you are not well and nights are worse than days, you say right, thank you. Ready aye ready.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">You'll be contacted, he said. In the meantime, there is nothing I can offer you.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Yet we still liked him. He was personable. He was reasonable. He was razor sharp. And above all, he was reluctant to tap a spine or open up a skull in order to fish around in a brain until he was sure there was a reason for it. This alone earned my trust. My father always used to say, when it comes to a choice of surgeons, pick the one who has the most experience with the operation in question. If you must choose between two surgeons of equal experience, favor the one who is reluctant to cut.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The MRI appointment secretary sent a letter with detailed instructions. The date? Mid February. Four more months. </span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com1Toronto, ON, Canada43.653226 -79.38318429999998243.2856095 -80.028631299999986 44.020842499999993 -78.737737299999978tag:blogger.com,1999:blog-8256131156058173921.post-79314361110741229602018-05-04T13:44:00.000-04:002018-05-04T17:40:28.279-04:00Field Notes from a Medicare Disaster: Two<br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">If a journey through our health system teaches anything, it is that each hospital is a character in the larger narrative -- each has its own personality, flaws, quirks, and story arc. St. Michael's Hospital is Dickensian, rooted firmly in Toronto's 19th Century when one's religion defined one's status, friends, diet, and prospects, and most citizens were Anglican or Catholic. There are religious symbols everywhere -- statues, crosses, more statues, stained glass -- throughout its warren of old and older wings which are as confusing to navigate as a prairie dog city. The ceilings get higher and the rooms bigger as one moves to the newer zones, not because people grew taller over the last century, though they did, but because there are so many more electrical cables and pipelines carrying the wherewithal of technological medicine. Fading, flaking colored lines painted on the floors direct visitors' feet to the right wing and the right set of elevators. During the week, the main floor, with its entry off Queen Street, is overwhelmed by visitors and outpatients moving shoulder to shoulder through its narrow halls, like salmon fighting their way upstream against the onrush of wheelchairs, gurneys, or construction crews moving in the opposite direction. It's like the Path under Toronto's downtown streets when the office towers empty for lunch and everyone hunts for a food court at the same time.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">There are 900 beds at St. Mike's if you don't count the ones on which patients lie in the halls or in the trauma center waiting for a real one. Its reach extends right across Toronto. It merged last year with St. Joseph's Hospital which is many miles away in the west end, and with a rehab hospital/long-term care facility called Providence, which is in Scarborough, far to the east. It seems to be in a constant state of renovation. There are construction crews, trucks, staging areas piled with equipment and scaffolding all around the block-and-a-half it occupies. There is an elevated glass bridge connecting the 1950s version of the hospital to a shiny, glass-walled research center named after Hong Kong billionaire Li Ka-shing (whose story is also Dickensian). St. Mike's is a bridge between two groups who usually avoid each other, the very poor and the very rich. The realm of money--Bay Street/Banks/TSX/legal empires -- is to the southwest. The gay Village is northeast, the theater district is north west, the poorest parts of Cabbagetown are south east. Next door, in front of St. Michael's Cathedral, there is a small park with a few benches where the homeless sprawl winter and summer. When it's bitterly cold, they plunk themselves on the deep chairs in the hospital's front lobby, their worldly goods arrayed around them. No one rousts or disdains them as they sleep, not even the rich ladies clad in serious furs who have come for appointments upstairs. No one rousts the nicotine-addicted patients either when, in their gowns and not much else, they gather outside the front door with their IVs and urine bags hanging off their wheelchairs, smoking, smoking. St. Mike's treats the poor and the bereft according to Christian principles. Yet if one is not a Christian, and many of St. Mike's patients are not, the Christian heart on its sleeve can be disconcerting. I went there first when eldest daughter gave birth on its maternity ward. The elevators opened on a larger than life-size statue of the Virgin Mary. What's a nice Jewish girl doing in a place like this? I asked her. She shared a room with a woman whose female relatives all wore hijabs.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">She was there because she had found a wonderful doctor at St. Michael's family practice unit, a woman so smart, so caring, my Dad would have asked her to join his practice. The family practice unit is a little north of the hospital, on Bond Street, beside the former townhouse of William Lyon Mackenzie, first mayor of Toronto, ardent publisher, anti-corruption agitator, rabble-rouser, democrat. He was also a leader of the 1837 rebellion which failed to usher in a brand new democratic day while ushering out the Family Compact who ran everything their way. (Two of the rebels were hung, others were transported to Australia. William Lyon Mackenzie fled to New York where he worked as a journalist for ten years until it was safe for him to return, after which he fell to rabble-rousing again.) We owe thanks to him for many ideas about government that we now consider self evident. His house was saved from destruction when his grandson, Mackenzie King, was Prime Minister. It's a museum now.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Two days after his fall and his evacuation from cottage country to St. Mike's, he </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">was moved to an upstairs bed. He'd spent 48 hours in the bowels of its trauma center. He'd lain in a cubicle separated from its 24/7 hustle only by curtains. There was no daylight, no darkness either, the air was neither warm nor cold, humid nor dry, there was no season at all. Curtains did not grant privacy or stop the sounds of others' suffering in the cubicles nearby. He needed help with all his functions. This was provided by nurses who never batted an eye at what they had to do. Patients in his state, only part way to lucid, don't seem to care about these indignities. Perhaps they aren't indignities at all, perhaps we just think of them that way because we have forgotten our dependent childhoods. Or we remember too well. In a short time, it is no longer indignity, it is the new normal.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">They moved him upstairs to the neuro ward, the place where injured brains come to heal. There were windows along one wall with a view of brick walls and rooftops.There was a bathroom for patients able to make their way to it. No one in that six bed room could. There was a cross over the door. He is a convinced atheist but wasn't really in any condition to notice or object, at least not at first. After he noticed, it made him laugh. A nurse sat at a desk in the center of the room at all times, keeping careful watch on each patient. It was not an ICU, but it wasn't a standard hospital room either. Beep-beeping machines read out how much oxygen was in his blood, graphed his heart rate. The urine bag showed his kidneys were functioning. The pressing questions I had were: when will he remember his computer passwords? What if he can't? How could I have been so stupid as not to write them down? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">About four days later he was moved to another room with four beds. One was occupied by a young man who had been in a terrible accident. He had lost a hand and a foot and his head was bandaged and he moaned frequently. The language seemed to be Tamil but we were never sure. There was another older man on the other side of the room who had constant hiccups and whose wife came only in the afternoons because they lived outside the city. The fourth bed was empty. Slowly, slowly, panic died away as he became more and more himself and began to do what he always does which is to make friends with whoever is near by. Soon, he remembered all his passwords. But he couldn't remember the accident, and he kept repeating the same questions about it over and over. It was as if he couldn't take in new information about it, as if any new detail given to him was immediately erased.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On the third or fourth day, I cannot remember which, he </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">was able to get up from the bed and sit in a chair. He needed help, but he could do it. They took out the catheter. Soon he could make his way to the bathroom using a walker. This was good because the nursing care was less attentive in this room. We often had to go in search of supplies, or the meal tray. The nurses seemed to spend most of their time sitting at portable computer stations lined up in the hall beside each patient room door like so many study carrels. They stared at screens indicating the scheduled medications for each patient, their diet restrictions, the names and emails of the residents in charge, phone numbers of family members, physio delivered, social workers consulted, tests ordered, test results returned, and on and on.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Eldest daughter had by this point become militant about finding out what in hell was going on with him. The strange gait, the unsteadiness, the gut issues, the sepsis and now this terrible fall -- we need a neurological workup, she said over and over, we need to know if this is about those ventricles, because if it is, there's a fix, you put a shunt in the brain to drain some of the cerebral spinal fluid away and things get better. So we prevailed upon a resident who came in to see him to ask a neurosurgeon to come by. Eventually, a very clever fellow appeared, in his forties from the look of it, fresh out of the operating room, wearing surgical cap and scrubs. He asked a lot of questions, good, sharp questions, said he could not offer an opinion without more investigation, said his office would set up an appointment after discharge. We liked him immediately. He was the first physician encountered who seemed very interested in the unfolding events that occurred before the fall. We explained that he'd already seen a neurologist who had ruled out Parkinson's after ordering a CT scan. Have that sent to me, he said. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That turned out to be difficult. It required phone calls to the physician who had taken over his file from his former doctor who'd retired. The secretary muttered about a fee in exchange for a letter to the neurologist asking for the scan. I muttered back. The letter was sent. The neurologist 's secretary needed a signed letter of authority to release information, which required a trip down to that office, followed by another trip to pick up the data. Was it a disc? A thumb drive? I can no longer recall. The scan had been done in another hospital only ten blocks across town and should have been instantly transmissible electronically. But apparently that hospital cannot transmit data direct to the St. Mike's network. Was this a system problem? Or a system-wide choice to protect privacy? So far as we were concerned, hospitals ten blocks apart might as well have been in separate countries.And what if I had had as much difficulty getting around as he was having? What if he didn't have a family member able to help? What if my language skills and prodding skills were not up to this task? Would information transfer have stopped right there?</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It had been almost as hard getting information about his condition from the team in charge of his care on the ward. Whenever a new resident entered the room, which was frequent, I asked: did he have a concussion? He'd hit his head against a stone wall hard enough to break that stone, so of course he had had a concussion, though none of them actually confirmed that. I had been told there was no brain bleed or undue swelling down in the trauma center. So why did I keep asking? Because he was so slow to get on his feet. There didn't seem to be a plan to help him, either. No one mentioned physio, that the brain benefits from carefully tuned and practiced movement. I kept explaining his out-of-the-box brilliance, how fine a mind he has, as if to say, come on, this is a man who is really worth saving, so what must we do to heal him? They were so vague I came to the conclusion that, given his age,they were writing him off. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But it is also true that even </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">as I asked about concussion, I didn't really want to hear anyone say yes, he had one.</span></span> I'd been reading about the effects of concussions on professional athletes who'd had their bells rung over and over, some of whom were so troubled that they'd died too young from suicide. Several, who'd allowed their brains to be autopsied by scientists studying the effects of concussion on the brain, had developed tangles of proteins where they should not be. Forty years earlier, my guy had made a film about Mohammad Ali who he considered the most marvelous, graceful athlete to enter a boxing ring. By the summer of his fall, the summer of 2015, there was no more floating like a butterfly and stinging like a bee for Mohammad Ali. He walked with terrible difficulty, shuffling, halting, shuffling again. His voice had become a low, rough rustle, instead of his old confident shout. He was said to be suffering from Parkinsonian syndrome which some doctors connected to the hard shots he'd taken to his head over the course of his career. Well my guy had had his bell rung doing sports too. I'd heard the stories. There was that hockey puck to the eye when he was a high school goalie. It had knocked him out. His eye was swollen shut for a month. And what about the relentless pounding he took on his high school and university football teams?Maybe he was going down the same path as Mohammad Ali? Later I learned that Ali had had bouts of sepsis too.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">the neurologist had ruled out Parkinson's, I reminded myself, joining Parkinsonian syndrome to Parkinson's in my head. Why not? A similar name, surely similar causes and effects? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Finally, his nurse said he was to be discharged the following day. The senior doctor in charge of his care at last sat down to speak with us, right in front of the other patients in the shared room, just as he'd sat with the hiccuping man and his wife the day before to explain the man's probable fate-- not a happy one. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">It seemed to me I'd been chasing this man for too long: he was never around when I was there to visit and I was there every day for two weeks. We were like ships passing in the night: either he had done his rounds already when I got to the hospital, or he planned to do them after I left, and though I often went to the nursing station to ask after him, he was nowhere to be found. The nurses said I should leave a message, which I did, but follow up was nil. He sat in the only unoccupied visitor's chair while I stood beside the bed. He asked again exactly what had happened, how the fall had occurred. We explained about how we'd all been sitting around visiting for a few hours when he got up to go to the bathroom, but no one actually saw him fall, so we couldn't say whether he'd stumbled, or something else had happened.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I'll tell you what happened, he said. It's like this: he was sitting for a long time, and then he got up and walked toward the steps, and he probably had an older person's blood pressure moment. Anyone over 60 should not move quickly after getting up from a chair because the blood pressure can drop suddenly. You need to give your heart time to catch up. Okay? That''s what likely happened. So count to ten after you get up from now on, okay? And you'll be fine. Yes there was a concussion, of course there was, but no bleed, no untoward swelling, you'll be fine. Just fine.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I clutched at this explanation and this reassurance like a safety rope in a white water raft. And after I got him home, I became instantly religious-- about counting out loud to ten whenever he got up before I'd let him take a step.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I waited for him to become just fine. But he was more and more unsteady, the walk kept getting worse.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I began to count the days until we could see that neurosurgeon. And asked eldest daughter to find out if her physician would take us on.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span>ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0tag:blogger.com,1999:blog-8256131156058173921.post-73733035869173697062018-04-27T12:00:00.000-04:002018-07-10T09:19:10.549-04:00Field Notes from a Medicare Disaster: One<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><img alt="2 Persons Holding Their Hands" class="image-section__image js-photo-zoom" data-pin-media="https://images.pexels.com/photos/233223/pexels-photo-233223.jpeg?auto=compress&cs=tinysrgb&fit=crop&h=1200&w=800" data-zoom-src="https://images.pexels.com/photos/233223/pexels-photo-233223.jpeg?auto=compress&cs=tinysrgb&dpr=3&h=750&w=1260" height="360" src="https://images.pexels.com/photos/233223/pexels-photo-233223.jpeg?auto=compress&cs=tinysrgb&h=650&w=940" width="640" /> </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Medical mysteries are like Tolstoy's unhappy families-- none is mysterious in exactly the same way. As with any other suspense story, each new clue seems relevant, salient, and vital--until it's replaced by the next. And there's always a next. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I don't remember when I first noticed that something was not right with him. I'm pretty sure it was after granddaughter number one made her way into this world, so not that long ago. I was surprised, even irritated, that he declined to go for long walks, that he declined to dance. He used to love a good walk, was enthusiastic on a dance floor, even on the kitchen dance floor. At first I took it personally. He's done with me, I thought. What do you expect after so many years squabbling and loving each other? So there was nothing really wrong, nothing to worry about: after all, he was still playing tennis, wasn't he? But then his enthusiasm for that began to fade too. He had been an avid player for thirty years, ever since those private lessons from a pro on a private court in L.A.'s Mandeville Canyon. After he acquired his cruel serve, he loved running for hours under a blistering sun, pouring monsoons of sweat while sizzling aces past much younger men, men less than half his age.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">There were twists and turns to this developing not-rightness, but let's just say that in retrospect, it must have started long before he paid attention, long before he stopped walking unless he had to. Moments of obvious illness were so transitory. Stomach issues came and went, though he had enjoyed an iron gut (except when migraines kicked in, but they'd stopped decades ago, ever since they shut that coal-fired plant near the downtown core). He was a fan of TexMex and Sichuan and Indian curries hot enough to make steam rise off his scalp. But suddenly he was seized by the runs. We searched through science articles online, read the new work on the microbiome. It raised this question: could it be that the antibiotics his doctors and dentists had shoveled into him for sinus infections and root canals had killed some important biota in his gut? Or was he developing IBS? Or Crohn's? A gastroenterologist examined him with a scope, found inflammation, prescribed yet another antibiotic and after examining him once more a few days later, assured him he didn't have either, just a little stray inflammation which had disappeared entirely. After that, he loaded up on probiotic yogurt whenever he was prescribed an antibiotic. It helped. We put the gut issue down to sliding into his sixties. </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">As one clever elder cousin likes to say, aging is a long surprise. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And so it is: it turned out that all that was prologue. At some point, he acquired a new posture. His arms slumped forward when he was standing still and his head drooped. He couldn't seem to make his arms swing in a coordinated fashion when he walked. He said there was something wrong with his left thigh, and sure enough, calcified scar tissue was discovered there, the result of a muscle tear ( yes, a tennis injury) that had to be broken down with ultrasound, followed by physio. But the physio didn't seem to help: his walk continued to change. His feet made sssshing sounds on the pavement. I had always been able to spot him far off, even on a crowded street, because of the sway of his big shoulders, the way his feet kicked from side to side, a confident, rollicking, even arrogant stride. I shouldn't be hearing your feet drag like that, I thought, I should be hearing your heels hit the pavement first. What is that about? </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Then he began to say he felt unsteady. Not dizzy. Unsteady. What in hell is the difference, I'd ask. He couldn't explain but he was adamant. Unsteady was how he felt. I'd like to be able to say exactly when this all added up to something that said go get medical attention, but the best I can do is create a crude divide between good and not-so-good. Thirteen years ago he was still so strong that he helped paramedics carry one of his oldest friends, brought home in an ambulance from a hospital to die, up to his bedroom at the top of a long, steep flight of stairs. If he was breathless, I didn't hear it. Ten years ago at an August wedding in Israel I almost passed out from the crazy-making heat and humidity, but he barely noticed, thanks to tennis, and my gut went haywire after a lovely dinner party, not his. Nine years ago he was perfectly fine, overseeing a prototype turbine installation for testing down in PEI. Five and a half years ago he was still playing tennis and a picture shows his grandchild number one swinging off his left arm as they walk up from the beach to the car. He's carrying a loaded beach bag with the other arm. He is perfectly steady. His feet are moving the way they always had and his shoulders are as they should be. Yet I do remember he was not altogether right that day. The gut was acting up again.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Later that summer, one of his associates screamed at me to come quick, he was on the back deck but he was unable to rise from a bench. I was irritated. </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Big deal, I thought, he's a little wonky, it's a hot day. I went out, saw he was somehow stuck between standing up and sitting down, called his name, got an incoherent response. I felt his skin: he was burning up. I sent his associate scrambling for help from the neighbors. Working together, we still couldn't get him upright so we let him slide down to the deck. His temperature was 103, his pulse fast and thready. I had to cut his shirt off to cool him down.When the ambulance came he couldn't cooperate with the paramedics.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">They took him to a downtown teaching hospital, part of the University Health Network.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> So we are speaking of one of the best hospitals in the country, in the top tier in the Western world, the kind of hospital medical students hope to do their residency in. In the emergency, they diagnosed sepsis and hit him with an intravenous antibiotic bomb. That night, there being no beds available on the wards upstairs, he stayed there on a narrow gurney. He wasn't happy. He tried to climb off it, over and over, tried to pull out his IV too, because he was that out of it. He was still out of it the next day, and the day after that. What brought this on? There had been something dental the week before, no antibiotic given, was that the cause of this whole body infection? </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> Finally, after two days, they found a bed on a ward for him, the gerontology ward to his dismay, the same ward his mother-in-law had been on a few months earlier. She is 25 years his senior. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"I'm not old," he kept saying. "Why am I here?" </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"Well technically you are," said the young doctor he complained to. "Anyone over 65 is old."</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">"I beat men half my age at tennis," he said, meaning age has nothing to do with chronology. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">That ward had locked doors leading to the stairwells and the elevators, and there were security guards hanging around, the first time I'd noticed security guards on a ward as well as at the entrance to the emergency where wild behavior does occur. Actual old people wandered these halls with their gowns flapping open, muttering. One elderly woman repeated the same undecipherable phrase over and over as she poked her head into his room, tapped the floor with her metal cane. Musicians sometimes performed in the lounge area, no doubt to soothe these savage ancient breasts. He didn't attend, not being ancient or savage, and besides, getting up to walk was hard. He'd tire after a few yards and had to use a walker to steady himself. As my father was no longer in this world and no longer available to consult, I looked up sepsis on Google because I could never seem to find the leader of the team in charge of his care to get an explanation. The individuals on the team seemed to change every third day. I was shocked to discover sepsis could have killed him because none of the team had bothered to explain. The nursing care, on the other hand was excellent: on time, more than competent,yet there was something missing from it too. I didn't identify it until much later, when he was in another hospital which has a different culture of care. ("No one is malicious here," one of the nurses there later said," we make mistakes, yes, but we get rid of the malicious ones.") The quality that was missing in this first hospital was kindness. The care was efficient, brusque, unsympathetic. And the parking was shockingly expensive. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And one more thing: while he was there, his own family doctor never came to see him. When my Dad was in practice, a patient's family doctor often went to see his/her patients when in hospital, even if they had no hospital admission privileges and their patients were therefore under another doctor's care. There were good reasons for this, starting with the most obvious: the family doctor knows the patient intimately, knows the history, can advise on past issues, when the patient himself is unable to explain. This is not such an important safeguard when the patient has a family who come to the hospital daily and have some knowledge of the patient's history. But in a society like ours, now, where diversity is our strength, and many of us have left families behind on another continent as we struggle to put down new roots, it can be downright dangerous. As you will see.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He didn't notice his doctor's absence. He was more interested in the flocks of students who came in to examine him. They asked interesting questions about him and his work. He asked interesting questions about theirs.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Soon he was better and then better still, though his digestive tract remained in an uproar from the massive antibiotic assault. A daughter spoke to a nutritionist who recommended a strong course of probiotics, not the pap available in commercial yogurts, but a pill containing several live strains, only on offer at health food stores. He took them for a short time, improved rapidly, and came home.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The dentist was advised to use antibiotics in advance of treatment in future. And from that time forward I paid sharper attention to how he was doing. I noticed little things that I couldn't explain. He'd slump to the side when his office was too hot, </span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">or if he was eating outside on a hot summer night, l</span></span>ike a plant drooping from too much heat. He didn't notice: I had to remind him to sit upright. He'd try. Then he'd slump again. He went to see his family doctor, a wonderful diagnostician who still used his hands and his ears and his eyes to examine his patients, an old school kind of doctor trained in Ireland. There might be a neurological issue, he said, after watching his new walk. He made a referral to a neurologist. A daughter conferred with a gerontologist in the UK who had theory regarding too much fluid washing through the ventricles of the brain. He should be examined for that, he said. Six months passed before the neurologist could see him, and then several more months for a CT scan.It showed brain shrinkage but nothing out of line for a man his age. The neurologist ruled out Parkinson's. I had no clue why he had considered Parkinson's, but since he'd ruled it out, I forgot about it. </span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"><br /></span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">A dear friend of mine died suddenly. There was a memorial that spring. He sat in the back, didn't mingle, which was really unusual, and was grateful he didn't have to walk too far, that there was an elevator. After it was over, he sat on a bench outside in the sun waiting for me while I said goodbyes inside. I found him slumped to one side, needing help to stand up on his own. The husband of my dead friend said: hey, what's going on, he doesn't look well. And it was true: this was a marked change. He had helped them pack their house a year earlier when they decided to move to another part of the GTA. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">A few weeks later he had another bout of sepsis, again following a dental something. By then, walking had become a significant issue, too much heat another. I thought exercise would help, the brain being a highly changeable, use it or lose it kind of place according to a new school of neuroscientists. He bought Nordic poles to see if he could retrain his brain along with his walk, get into the swing again.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">And so we come to the summer of 2015, two and three quarter years ago. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">We decided to go to a cottage with our eldest and her family for a few days though we have always known that taking vacations in Ontario usually ends in disaster for us ( usually someone gets sick, or someone dies, or a tornado tries to take us out on a highway). Let's not call it a vacation, it isn't really a vacation, I said to him, it's a time out, it will be fun. We'll take the poles, you'll walk. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">He did take the poles. He did walk. </span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Friends came to visit. We sat on the grass by the lake for hours, talking, laughing. Well, they did and I did. He was quiet. After a few hours, he got up to go to the bathroom in the cottage. It was on top of a hill, reached by a long run of stone steps with a stone embankment at their base. He was unsteady getting up: I asked if he wanted a hand on the steps which had no rail. I'm fine, he said, and walked past me.Then someone screamed, the eldest. She lay her baby on the ground and ran past me. I turned to see where she was going, appalled that she had put her baby, grandchild number two, on the grass like that, only to see him sprawled at the base of the stone embankment, blood pooling from his head. He was out, completely out. Three frantic minutes went by as we tried to get the blood stopped, called for an ambulance, checked his vitals, called his name. His pallor was such that I thought he was next to gone. Then his eyes flickered open and his life started again. The ambulance came and the paramedics got him on a back board with his head immobilized. I jumped in the front seat of their van with some of his clothes. They drove with the siren going to a local hospital, one that had no overnight beds and only one doctor in the emergency-- on a summer weekend in cottage country. The doctor did an X-ray, determined there was no skull fracture, picked stone chips out of his scalp and then called for medical evacuation.He was not really coherent, couldn't explain to the doctor what had happened to him, was too sleepy. It took two hours for the next ambulance to come. The paramedics put him in the back, told me I could ride up front. We sailed down the highway into the dark night, going so fast, so smooth and fast, like an iceboat sailing across a frozen lake. The speed would have been terrifying if I had room for that kind of terror. I was 100% focused on the idea that he might be dying behind me on that backboard. He kept asking if he could turn over on his side. Not yet, sorry, the paramedic sitting with him would say. Over and over and over.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Two and a half hours later, at about three o'clock in the morning, I sat in a dark room in the trauma center at St. Michael's hospital waiting for a verdict. A doctor came in and said he was okay, he had no skull fracture, no brain bleed, he was going to be transferred to a ward, I should go home.</span></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">I breathed a huge sigh, and went out into the humid night, got in a taxi, slept at home. Trying hard not to think, trying hard not to focus on the most important question: why had he fallen like that? Why couldn't he remember? Had he misplaced his foot on the bottom step? Or had he fallen because something went awry in his brain? </span></span><br />
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<br />ELAINE DEWARhttp://www.blogger.com/profile/05227015821228599117noreply@blogger.com0