Friday, 22 June 2018

Field Notes of a Medicare Disaster: Nine

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?

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.

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.

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.

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. (Theoretically 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.

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.

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.

What can it hurt, we thought. To keep moving, you must keep moving, and better to move with music, right?

We signed up.

 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.  
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.

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.

My guy had experienced gut issues before his movement problems appeared. There was something like hope in this!

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.

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.

It seemed to work. He improved.

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.

Though we used the patch carefully, his symptoms became worse. He also had an allergic reaction to the patch glue.

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.

It might be Multiple System Atrophy, he wrote back, and for that you need a much larger dose of thiamine, about ten times larger.

And then he stopped writing back.

What's Multiple System Atrophy? I wondered.

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.

Fine, we said.

But it was not fine.

In fact, it did not end well at all.

Friday, 15 June 2018

Field Notes from a Medicare Disaster: Eight

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.

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.

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 facts. Sometimes they derived from their scientific advisors' interesting relationships to drug companies and medical device makers.

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.

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.

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.

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.

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.

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.

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?

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.

Is that new information? I asked.

Doesn't appear to be, he said.

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.

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.

On our next visit to the family doctor, we double checked the druggist's statement with her. Proteins and Sinemet, not good together, right?

Oh sure, she said, that's been known for thirty years.

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?

She could, but she thought they had pretty long waiting lists.

How long? I asked.

Two years, she said.

Friday, 8 June 2018

Field Notes from a Medicare Disaster: Seven

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.

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.

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.

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? 

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 substantia nigra (translation from the Latin: black substance) which itself is part of an area called the basal ganglia, which processes movements, automatic and otherwise. The substantia nigra 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 substantia nigra, 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.

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 substantia nigra 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 substantia nigra? 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?

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.

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.

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.

Soon these websites prescribing diet changes 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.

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.

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.

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.

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.

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 substantia nigra 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.

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.

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.

So we have a few questions, I said.

Such as, he said.

Well, we've been told that he will do better without eating any dairy and so we've been doing that.

Don't ask me questions like that, he said. I'm no nutritionist.

But we read that it's a problem to take Sinemet with protein, it inhibits absorption of the drug.

Oh, he said. First I've heard of that.

Well that was surprising as most of the websites went on and on about it.

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?

I've heard exercise is good, he said.

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.

Where's that? he said.

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.

My guy and I exchanged looks. His eyes said, don't bite. Be nice. We might need this guy.

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.

So have you been following the papers suggesting that stem cells might replace dead dopamine-producing cells? I asked.

No, he said.

If you're interested, I could send you the links.

Not really interested, he said.

By that point, I was having trouble locking down my temper. He seemed to find my questions faintly amusing but not worth considering.

I decided to switch direction and ask him something he could easily answer.

Can you please tell us something about the narrative arc of this disease?

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?

Oh I wouldn't cross any time zones, he said.

Why not?

Confusion, he said. But you could go to Florida if that's what you're asking.

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...

Here's what he said: "Worse."

And with that, the appointment was over.

Friday, 1 June 2018

Field Notes from a Medicare Disaster: Six

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.

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.

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.

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 was in those other beds. I think 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.

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.

He explained he was a fourth-year neurology resident. Would we mind if he did an examination?

Be my guest, my guy said.

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.

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.

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 in his head 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.

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.

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.

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.

So what is it I have? my guy asked the resident.

The team leader will discuss it with you, he said.

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.

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.

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.

He didn't like that. He said he'd ask the neurosurgeon to drop by. They started the Sinemet then and there.

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.

I think now that I smelled politics in the air, hospital politics, disagreements behind closed doors. But maybe I'm confabulating.

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.

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.

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.

How could that be?

That's when we started giving Google a serious workout.

Friday, 25 May 2018

Field Notes from a Medicare Disaster: Five

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.

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. 

All he takes are anti-histamines, vitamins, and probiotics to keep his digestion in order, I explained to one nurse after another.

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.

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.

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 some. At least we thought we did. We knew he didn't have a middle ear problem. We knew 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. 

Getting better was my goal.

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.

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 Globe and Mail where he would find an article that finally explained biofeedback clearly.

"Did you notice the byline? "my man responded. " No? Didn't' think so. I wrote it."

My belief in the vital importance of physical activity 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.

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.

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.

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. 

 After about a week, they moved him to the neurology floor. 

Late one day, they sent him for that MRI.

Once again, we waited.