Friday 3 August 2018

Field Notes from a Medicare Disaster: Fifteen

The lead physiotherapist didn't return from her ten day vacation until after the Sinamet withdrawal experiment began. By then, my guy was walking again. She was, to say the least, surprised. At first, he was only able to take a few steps while someone (me) scurried behind him with a wheelchair in case he lost his balance. Then, in a triumph of the will, he made it on his own two feet from his bedside to the hall, about twenty steps. I could hear his feet as they slid across the floor, I could see his knees buckle and wobble, and he was horribly slow, but he did it. A few days later, he was able to walk to the door and go a few meters down the hall. His gait was still awful, there were many freezing moments, but from time to time, to my amazement, his feet hit the ground heel first almost as they used to before his problems began.

This was spectacular improvement. The neurologist at Michael Garron and the doctor at Providence had been right. He didn't have Parkinson's or Parkinsonian syndrome.  He had something, but not that. He was back on the path to improvement through hard work. I was thrilled.

Yet every now and again I was also overcome by fury.

I was furious at myself. I couldn't believe I had been so blind to the obvious for so long. It was now clear that his rapid decline coincided with the introduction of Sinamet. Increasing the dosage to "help" him had only made him worse. It had gone from three pills a day to a minimum of five, more when required, in less than 18 months. The more I gave him, the more his decline picked up speed.

I cursed myself as an idiot. Why hadn't I connected the decline to the drug?

I was also furious at the charming young neurology resident, the one we had liked so much, who had clearly made a diagnostic error, yet somehow convinced the senior staff on the ward that he was right, and convinced the neurosurgeon to back off doing a spinal tap to test for normal pressure hydrocephalus. He had done this in spite of real images of my guy's brain which had led the neurosurgeon to suggest that test. By contrast, he had relied for his opinion on a combination of physical exam, a paper test, and intuition--in other words, not hard evidence, more like educated guesswork. Why had the senior neurologist in charge of my guy's care not been alarmed at the speed with which his condition worsened? On reflection, it seemed obvious that it wasn't just that his interest lay in epilepsy and not in parkinsonism. It was likely because leading minds at St. Mike's, his among them, had leaped to the wrong diagnosis and then felt a need to defend it. And so he failed to consider new information in any other light. My guy's need for more and more Sinamet to get less and less benefit was construed as par for the course.  Sinamet is not a cure and eventually fails to work.  So what if it failed to work quickly? He'd said the prognosis was " worse." This was what worse looked like.

And the fact is I too got stuck in the parkinsonian frame. Having been given a diagnosis, I shoved everything I knew about his medical history into that overly capacious narrative. It all fit.  Though my guy's gait symptoms appeared after he turned 70, which is considered late, those who get Parkinson's late do tend to decline more quickly. Several groups have shown that it may be an unhealthy balance among the microbial populations in the gut that causes Parkinson's. Mice can be made to exhibit parkinsonism by deliberately altering their microbial populations. Most people who develop Parkinson's, usually between the ages of 50 and 60, have had prior gut issues. My guy had had prior gut issues.  One Australian scientist is certain that Parkinson's is induced by an H. pylori infection, the same bacteria known to cause stomach ulcers, and that this can be cured with a complex course of antibiotics. My guy had never had an H. pylori infection, but he'd had all kinds of other ones having to do with his teeth, and another recent paper proposed that Parkinson's is the result of infection by an unknown pathogen which makes its way to the brain through the vagus nerve. Researchers at Aarhus University did a survey of all patients in Denmark who had had their vagus nerves severed between 1977 and 1995. (This procedure was once a relatively common treatment for stomach ulcers.)  Few who had their vagus nerves completely severed developed Parkinson's, though it is expected to occur in one person per thousand. Another large group of patients whose vagus nerves were only partially severed were much less protected from Parkinson's. (See:  Vagotomy and subsequent risk of Parkinson’s disease” by Elisabeth Svensson PhD, Erzsébet Horváth-Puhó PhD, Reimar W Thomsen PhD, Jens Christian Djurhuus DMSc, Lars Pedersen PhD, Per Borghammer DMSc and Henrik Toft Sørensen DMSc in Annals of Neurology. Published online June 2015 doi:10.1002/ana.24448.) It used to be considered unlikely that pathogens would find a path to the brain: the immune system was thought not to extend its reach beyond the blood brain barrier because that barrier was mostly sufficient to the task. But that view is changing under the pressure of new facts. As the cover story of the August 2018 issue of Scientific American shows, there is clear evidence that the brain and the immune system are completely intertwined, that pathogens do find their way to the brain where the immune system goes to work to take them out. Even my guy's migraines in middle life fit the parkinsonism grab bag, not that anyone asked him if he'd ever had them. In his forties, he was often laid low by migraines so severe he threw up. Over the last six years, several epidemiological studies have shown a strong association between mid life migraines and late onset parkinsonism. The first such study published in 2012 was done on an Icelandic population. My guy is of Icelandic heritage on his mother's side.

And yet. There was a simpler explanation for his symptoms. While medicine is more art than science, it is nevertheless useful to apply to diagnoses that great science rule of thumb called Occam's razor-- the simplest explanation is probably the best. He'd had his bell rung several times when playing hockey and football in his youth, and he had had two concussions in the last two years. Traumatic brain injuries could well have caused all the symptoms he displayed.

If my Dad had been around he would have been suspicious of the diagnosis from the start. He would have said get a second opinion from someone who has treated a lot more cases of Parkinson's than a young neurology resident. Of course in my Dad's day, that second opinion would have happened in the hospital. In his day, hospital patients' conditions were considered weekly by students and senior staff who walked the wards together in a process called rounds. About once a week, doctors and nurses and students would go from one patient to another, reviewing each file, talking to the patients and questioning each other as to diagnosis, treatment, and prognosis. Such debate allowed some mistakes to be caught and corrected. But nowadays, at least in Toronto, not all teaching hospitals have formal rounds, or so I was told at Providence. Why not? Too many patients, too little time.

Before we went to the appointment with the neurologist at Michael Garron who threw the diagnosis of parkinsonian syndrome out, I had asked a cousin in Israel to ask a Canadian/Israeli gerontologist friend of hers if he had any protectzia at Baycrest that could help my guy get in there faster.  Protectzia is a Hebrew word for exactly what it sounds like, a form of protection from the dead hand of bureaucracy. Israelis trade in personal contacts and favors to get to the head of the line.

Her friend asked a colleague/friend of his on staff at Baycrest (another neurologist) if he could help. But the word came back that the colleague/friend couldn't push his own patients to the top of that clinic's line either. We'd just have to wait like everybody else. This is both the upside and downside of being Canadian. We believe in fairness. We frown on queue jumpers. On the other hand, he'd been waiting for the clinic to let him in for almost two years.

So, in despair, I had decided to beg. I had called the clinic. A lovely, kind woman took my call. I explained what had happened since the referral was first sent, how my guy had had another fall and another concussion, how he had then been struck down in January by the flu, endured a near death experience in a major teaching hospital, was still, after more than a month in rehab, barely functional. We had been dealing with precipitous decline for almost two years with very little help. Please, can you help! I said.

The woman told me he was number 10 on the clinic waiting list, but she would try to move him up. In any case, he would probably get an appointment some time in June.

She called me back a week after the Sinamet was withdrawn. My guy could have an appointment at the end of April if I could find a way to get him there.

I had to tell her that everything was now in flux: the neurologist at Michael Garron had disputed the diagnosis and the Sinamet experiment had proven him right. We don't think he has it anymore, I said. We don't know what he's got. You guys do Parkinson's and parkinsonian syndrome. Can we still have the appointment?

I didn't hear that, she said. Just bring him in.

The stairlifts went in on time. The bathroom was finished the following day. I'd somehow gotten everything done.  He'll be so happy to know he can come home, I thought, as I drove out to Providence to give him the good news. He'll have good meals to eat, things to read, people to see, life will improve.

We're going to send you home tomorrow, the social worker said to him, after I told her we were good to go.

Don't think I'm ready, he said, to my shock.

Why not? I asked.

Just don't think I can do it, he said.

The doctor came in to see him later that afternoon.

Don't think I'm ready to go, my guy said to the doctor.

Sure you are, the doctor said, smiling.

No, my guy said. I don't think so.

But the film crew is coming, I said. They'll be here in a week. We've got to get you comfortable at home before that.

No, said my guy. They can shoot here.

Look, the doctor said. Everything's ready for you at home. You can do it. You'll be fine.

No, said my guy. I don't think so.

Desperation began to creep into the doctor's voice. Here's the way it is, he said. You can't stay here. Other people need this bed. Another patient is coming tomorrow.  If you don't go home, you'll have to be sent to long term care, and believe me, there won't be any good conversations to be had over there. Think about it.

That brought my guy up short. He'd grown used to nurses and doctors close at hand, ready for any eventuality. He'd grown used to the intimacy of this place, to the good conversations he had with his visitors and his roommates' visitors, with the nurses, the students, and especially with this doctor who he really liked. And perhaps he was more than a little worried about how I'd do as his permanently on call nurse. He had every right to worry about that. I was worried too. Yet his reluctance still surprised me. He'd never doubted his own ability to do anything before, or if he had, he'd hidden it well. I am the one who is the chicken. The worry wart. The one who plans ahead for any eventuality. He's the guy who always rolls with whatever flows .

Please, I said. Try.

Okay, he said. I'll try.

But he didn't look happy.


  1. Elaine: This problem of diagnosis is all too common. My father had the disease and his docs flipped around between Parkinsonism and hydrocephalus ( they actually punctured his skull & put in a drain to remove excess fluids). None of it helped and over 10 years he declined through postural problems and foot dragging, hand shakes, and finally dementia. At the time, diagnosis was simply by way of a positive effect on tremor using L-dopa ( but that is also seen with other diseases like Levy-body dementia).I'm aware of the possibility that gut flora has been linked to Parkinsonism, but there is still the issue of frequency between the genders. Males have the thing at least ten times more frequently than females---and that suggests to me an X-chromosome link. That is, it is a genetic disease that shows only sporadically as it passes down the female line to some unlucky male descendant.

    Best wishes with it all. Rod McKellar ( your second cousin Cheryl Davidner's husband).

  2. How nice to hear from you! Please give Cheryl a hug from me.

    As to your points: it is not 10 times more frequent a diagnosis in males versus females. More males, yes, but if the problem starts with blows to the head, that would make sense. Females, up until this last generation, generally avoided contact sports, in general take fewer physical risks. I'm interested in some new work which suggests these issues are not the result of the death of brain cells but interference of some sort in the actual portion of neuronal cells that transmit signals. My guy says that is often what it feels like from the inside: signal sent but it either doesn't get where it is supposed to go, or the signal is really attenuated. There is very little of this which appears to be genetic. Very few of those diagnosed with these problems have a genetic history that might predict it so I have real doubts about a genetic link.

    Very interesting to me is that Mark Davidner appears to have developed similar issues at about the same time. My guy and Mark Davidner in their late teens and early twenties drove together to high school and then University of Saskatchewan to class. Suggests some kind of environmental issue.

    Sorry to hear that your Dad suffered for so long.