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.
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.
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.
Permit me to briefly wallow in how we do things, in other words, in human politics. Politics are the products of the intelligence of individuals acting together. It is of a higher order than that which you display when going about the business of your own life. This may explain why it is so very hard for most of us to understand what the hell is going on when a presidential candidate like Donald Trump attracts followers, especially when he says out loud that the State should use torture to deal with terrorists.
In the US, they are big on the politics of happiness. It's so important a purpose of American political life that it's listed as an inalienable right in the Declaration of Independence. Its pursuit is something Jefferson (and Locke before him) thought that the State exists to protect. The Canadian Charter of Rights and Freedoms, a more modern document, is prudently silent on the subject, yet Canada, we were told last week, ranks very high on the World Happiness Report. We're number six. The US is several ranks below.
This list has been compiled and released with ballyhoo every year, for the last four years, on World Happiness Day, brought to you by the UN, a notoriously unhappy institution. The Happiness Report is mainly written by economists--practitioners of the dismal science. So what exactly is happiness in a political context and how is it measured? The World Happiness Report is compiled from statistical data derived from various sources, but also includes the results of interviews with several thousand individuals in each country listed. Nation is then pitted against nation and ranked.
One of the economists involved is John Helliwell of the University of British Columbia. I first read his work in the 1980s when he wrote about the energy pyramid, the relationship between the price of oil and gas and the amount that can be found and brought to market:the higher the price, the greater the available resource. This idea of an elastic supply was a startling notion at the time: organizations like the Club of Rome were screaming loudly then that we were running out of oil and thus the world economy was about to collapse. Another economist behind the Happiness Report is Jeffrey Sachs. As a very young professor at Harvard, he was asked to re-engineer the economy of Bolivia as it transitioned from top-down control to democracy and a free market. The result was an ugly process which created considerable unhappiness and may have contributed to the rapid expansion of the cultivation of Bolivian coca, the precursor for cocaine. Yet Sachs was invited to provide similar advice to various East Bloc states, including Poland and Russia, as they made the same shift.
You can look up their methods of measuring happiness here.
Canada's rank apparently means that we`s all happy here, almost as happy as those who live in the five countries above us (all western, all northern). Brazil, the biggest country in Latin America, is at number 17. In general, Latin America and the Caribbean are not as happy as North America, despite all those travel brochures showing clear blue waters and pristine beaches, and despite the deaths of hundreds of thousands of Mexicans in the drug wars plus the millions who voted with their feet and trekked to the US in droves, which drives Donald Trump crazy. Brazilians are allegedly much less sad than those who live in China, or Burundi which appears on the bottom of the list at number 158.
The Report`s definition of happiness turns on statistical facts like life expectancy, GDP per capita, income equality, and perceived levels of government corruption. Corruption, they insist, makes people unhappy.
And yet: the same week the Happiness Report placed Brazil fairly high on the happiness list, millions of Brazilians were marching in cities throughout Brazil to protest rampant government corruption. These were, for the most part, middle class people very, very unhappy about the shenanigans of their leading politicians and their corporate friends. Brazil's Congress, we were told by Stephanie Nolan in the Globe and Mail, is about to impeach its President, Dilma Rouseff, for moving money from one government department to another to get around banking rules--not to enrich herself or her cronies, you understand, but to pay for government programs. Many of the other top politicians in the major Brazilian political parties are embroiled in legal troubles of their own. One leading fellow is under criminal indictment for stashing ill gotten gains in Switzerland: many are enmeshed in a vast kickback/money laundering scandal known as Lava Jato. Lava Jato means carwash. The Brazilians have many clever, mordant nicknames for their dank business/ political relationships. My favorite, shared with me by an old Brazil hand just before my first trip to Brazil as a reporter, is jeitinho--little arrangements. When Brazil was taking its first steps toward democracy in the early 1990s, certain forms of jeitinho were organized to be legal. Brazil permitted only charities to make campaign contributions to political parties and candidates, an absolute no no in Canada and the US. It also permitted non governmental groups outside the country to donate to such politically connected charities, also a no no in Canada and the US --for obvious reasons. For more, see Cloak of Green, my first book ( if you can find it.)
Lava Jato is jeitinho on stilts. Allegedly, billions of of reais have been plucked from the pockets of the Brazilian government via Petrobras, the state oil company. Its board is presided over by politicians. Dilma Rousseff chaired the board herself during the presidency of her mentor, the former trade unionist and mill worker, Lula da Silva. While she has not been directly implicated in Lava Jato-- yet--others just below her have been. It is alleged that company officials were paid off by contractors who got contracts awarded in return. These officials allegedly put some of that money in their own pockets, but significant sums were also kicked back to finance political campaigns. A judge and prosecutors in the city of Curitiba stumbled on this scheme when an individual arrested for one thing began to sing about these things.
Judges have investigatory powers in the Brazilian legal system. The Brazilian legal system is also famous for its complexity and politically inflected outcomes. Former Brazilian President, Getulio Vargas, the un-elected strong man of Brazilian politics before World War II, the elected strongman after, who killed himself while in office in 1954 ( or was it just made to look like suicide?), used to say: "for my friends, anything, for my enemies, the law." Vargas was the fascist/nationalist who created Petrobras. Petrobras and the other state-owned companies Vargas set up became the means by which military officers enriched themselves when the military ran the country for thirty odd years. So this sort of Lava Jato is traditional in Brazil.
The investigating judge and his prosecutors went so far as to have the former president, Lula da Silva, arrested at home for questioning about how he came to enjoy the use of a beach front condo owned by a certain contractor. In order to protect da Silva from worse, Rousseff appointed him to her cabinet. Cabinet officers may only be investigated by the Supreme Court which takes its sweet time to do these things. But that appointment was declared void, as the judge released wire-tapped conversations between Rousseff and da Silva, and da Silva and others, though some of the conversations had been improperly tapped after legal authority had run out. The judge, according to Nolan, has become a hero in Brazil, someone who is determined to finally stop impunity in its tracks. Others are a little worried about the judge's judgement. Still others, like da Silva and Rousseff, are calling these actions tantamount to a coup. Rousseff was tortured during the military dictatorship which came to power via a coup so she knows a lot about coups. The last time I was in Brazil, in 2012, to speak to the alumnae of a very famous military school, many there took me aside to allege that da Silva, through his family, had been on the take while in office, and that the Rousseff government had to be gotten rid of. So a coup is not so far fetched.
All this mayhem among the happyish people in Brazil made it into the front sections of Canadian newspapers, which is unusual. Mainly we ignore Brazil though it is one of Canada`s most serious trade competitors. However, it is also true that we ignore lots of things going on at home. For instance, a corruption story that broke last week in happy Canada did not get lavish attention. The former deputy leader of the Quebec Liberal Party, Nathalie Normandeau, who once stood at former Premier Jean Charest's right hand, was arrested, along with several others, and accused of various forms of wrongdoing adding up to Brazilian style corruption. The others arrested were either long- time fundraisers for the Quebec Liberals, or for the Parti Quebecois. One had worked for the Liberals and also went to work at the engineering company Roche which got municipal contracts, allegedly in return for political contributions rendered. One commentator, Chantal Hebert, argued that this was the first time in her memory that any leading politician had been arrested for such wrongdoing. Of course there was an inquiry into former Prime Minister Brian Mulroney's relationship to one Karlheinz Schreiber who handed out what the Germans call schmiergeld (no translation required) to get the attention of politically useful folks who could get contracts issued to the right parties. Though Mulroney eventually admitted taking $225,000 of Schreiber's geld, he vehemently denied ever rendering such services ( and Schreiber actually sued him for failing to do anything for the money). No criminal charges were laid.
Those arrested in Quebec were investigated and charged by a police unit set up specifically to poke into political corruption after a number of political scandals unfurled in Quebec. The list is long. First came the Sponsorship scandal associated with the last referendum, which led to the Gomery Commission, which was not kind to Prime Minister Chretien and officials in his office but only led to criminal charges against ad executives and civil servants. The Sponsorship scandal led directly to the fall of the Paul Martin government and the rise of Stephen Harper. Then came the Charbonneau Commission of Inquiry into municipal corruption in Quebec. That's where we learned that major municipal infrastructure contracts, especially in Laval and Montreal, were handed out to a few engineering firms that operated as a cabal, deciding among them which would bid on which contract at what price, working hand in glove with political officials, civil servants, labor union officials, and of course, the Mob. This resulted in puffed up prices for municipal infrastructure projects, and also provided the wherewithal for kickbacks to municipal politicians and civil servants who turned a blind eye, or granted the necessary approvals. The Commission, appointed by the Premier, did not probe hard at whether or not such collusion went on at the provincial level. We heard about cash stuffed in socks, and cash wrapped in plastic, and rides on flashy boats, and expensive dinners and trips.
And don't forget the SNC-Lavalin affair which unraveled at the same time. It was triggered by a Swiss investigation into the affairs of an executive of this major international engineering firm which is based in Quebec. Allegedly, its executives played expensive ($100 million plus) footsie with Gadaffi's sons to gain contracts in Libya (and did the same thing with others in other governments in other countries). SNC-Lavalin also came to some sort of agreement with the director of the McGill University Health Network, Dr. Arthur Porter, which allegedly resulted in SNC winning the contract to rebuild the Centre. Millions were allegedly improperly paid out. While running the McGill deal, Porter was also appointed by Prime Minister Harper to head the SIRC, which oversees the workings of Canada's security and intelligence service. Porter, SNC-Lavalin, and several of its executives were eventually charged with various acts of fraud in regard to that hospital contract but Porter decamped to the Caribbean and then to Panama. He died of cancer before Justice had its say. Have I mentioned that two very prominent political personalities, a former Conservative Senator, Hugh Segal, and a former Liberal Senator, Lorna Marsden, served on the SNC-Lavalin board which was apparently unaware of these issues?
And lest you think these problems are peculiar to Quebec, the Globe and Mail reminds us in an editorial this week of all the other places in this country where corruption is the order of the day.
But what the heck. We`re number six on the list.
So maybe corruption doesn't make people unhappy after all.
