Field Notes from a Medicare Disaster: Epilogue

The Persistance of Memory, Salvador Dali

And so there we were, home at last, improving.

He still had no neurologist overseeing his care, but we were beginning to think that might be a benefit. I had kept track of the opinions of the neurologists he'd consulted. By the time my guy came home, he'd been seen by four--and that didn't include the neurosurgeon and the doctor on the neuro ward at Providence who isn't a neurologist but might as well be. By my count, the neurologists were evenly split as to whether or not he had a Parkinson's-like syndrome. Two were for, two were against.

To recap: the first neurologist, consulted about his weird gait and what neurologists call postural instability, had ruled out Parkinson's after examining him carefully and ordering a CT scan. He'd offered no diagnosis, just said we'll see what's what after a while. But as we waited for a while to come to pass, my guy fell at the cottage and suffered a serious concussion. The physicians who attended him at St. Michael's thought he'd fallen due to a drop in blood pressure after he sat in one place for too long, got up too fast, and boom, passed out, going down like a stone. The gait issues were not considered troubling. However, 18 months later, as these and other symptoms got worse, he was examined by a neurosurgeon at St. Mike's. On the basis of that CT scan and a physical exam, the neurosurgeon thought he might have normal pressure hydrocephalus but that could not be confirmed or ruled out without doing an MRI and possibly a spinal tap test. Two months later, another fall and another concussion brought him to the attention of the third neurologist, a neurology resident at St. Mike's. After doing the MRI, taking a careful history, doing a very thorough physical examination, and a Montreal Cognitive Assessment test, this charming young man said hey, you've got Parkinsonian syndrome! A senior neurologist (with little interest in Parkinson's, or us) concurred after my guy seemed to respond well to Sinamet which apparently meant that his brain was not producing enough dopamine. So: Sinamet was prescribed and my guy took ever increasing doses for almost two years during which he quickly, quickly declined. After a bout of flu/pneumonia, and a thoroughly miserable month at St. Mike's where no neurologist saw him because, according to the internal medicine resident, too many cooks spoil the broth, he spent another month at a rehab hospital called Providence. There he began to slough off the dire effects of the blood pressure drug given to him at St.Mike's for high blood pressure-- caused by the Sinamet. While he was still undergoing rehab at Providence, he was examined by a fourth neurologist at Michael Garron Hospital. Number four, contrary to number three and number two, said "I don't think you have Parkinson's or Parkinsonian syndrome. " He proposed taking the Sinamet away to see what might result. Without Sinamet, my guy immediately began to get better.

Just before the second Sinamet test, I had managed, by virtue of begging, to get my guy moved to the top of the waiting list for one of the best movement disorder neurologists in the country. Three weeks after he came home, off we went to see her.



The movement disorder clinic is located at Baycrest, which is a hospital, a rehab center, an assisted living facility, as well as a research organization. It is due north from where we live, not all the way to North Bay, but well on its way. To get there, I had to get my guy onto the small stairlift installed on a short flight of steps from the main floor to the side door which opens flush with our driveway. From there, I had to get him into a wheelchair and roll him to the curb so he, in his wheelchair, could be pushed into a special wheelchair taxi. Being a worrier, I'd made my guy practice getting on and off that short stairlift to make sure he could actually do it. It was a much tighter squeeze than the big stairlift custom-made to fit the staircase to our second floor. He had to back on to this one which seemed to set off waves of anxiety because he could not actually see the chair behind him and he had to trust me when I said keep going, you won't fall. I'd tested it myself and discovered I'd have to hold his feet on the foot platform as the chair descended on its slide, because he couldn't. And if he didn't, they would jam against the wall.

To get this whole operation under way, I rolled his empty wheelchair out the back door, bumped it down the back steps and pushed it along the driveway to the side door. Then I ran back up the back steps, through the back door, and helped him position himself on the stairlift chair. Then I ran out the back door again, down the back stairs and over to the side door so I could hold his feet in the right position as the stairlift carried him down to the landing. Once there, he had to stand up, and, using handholds, walk out the door to the wheelchair. Piece of cake, right?

The morning of the appointment, we got it done, but it took too long. We had to send the first wheelchair taxi away and call another after we'd made it to the curb. The whole business took us about twenty minutes. We were sure we'd be late for the appointment we'd been waiting for for so long. Would they kick us out?

We got to Baycrest only a few minutes late, found our way to the clinic, a nice, modern space with easy access for people in wheelchairs. It had a small gym and a few offices. We filled out the usual forms and waited until the neurology resident, a man in his thirties from Mexico, came to get us. He was very pleasant and friendly but with a very thick accent in English which made communication a little awkward: we had to prune our speech of idioms.

He said he would do the preliminary examination for his boss. It was thorough and identical to the one done by the neurologist at Michael Garron and the resident at St. Mike's. Then we unfurled the history, or at least I did because my guy was, by this point, so tired he was zoning out. The young neurology resident seemed to find it significant that my guy kept asking me to provide the facts instead of sharing them himself. He fixed on certain facts with the ferocity of a terrier. He did not appear to grasp that this was my guy's first day outside the house since his return from Providence, and was just beginning to recuperate from two years of the wrong medication.

He hauled out the Montreal Cognitive Assessment test. I could have done the test myself in my sleep, but I'm healthy. My guy was having trouble staying awake and he did not do well. He didn't appear to be able to think his way through the connect-the-letters puzzle (you must spot the pattern and then mimic it) and he had trouble remembering the list of words which he was instructed to learn and repeat five minutes later.  (I remembered them all from the last time he did this test: apparently they don't bother to vary the test details, assuming that those who are asked to take it probably have memory issues, so they won't be able to remember the answers if asked to take it again). My guy also did a bad job of drawing the clock face. It looked as if it was melting. However, in what should have been a clue to the young resident that this test was not terribly meaningful, when he was shown images of animals and objects and asked to name them, he said "dromedary" to identify the single-humped camel depicted on the sheet.The neurology resident didn't know what a" dromedary" is, so my guy explained. I added that he had produced and directed hundreds of nature television shows, reads general science publications ferociously, became a serial inventor for which he had just been nominated as a finalist for a prestigious international award. The resident didn't really want to know about this intellectual history (oh, high functioning, is all he said). He was only interested in now. Did he have hallucinations now, did he act out his dreams while sleeping now? Did he do the banking now? No, and no, and no, my guy said. I could see the resident's eyes go wide, as if to say: ah hah!  At the end of this examination I realized I was angry. Why? I knew what he was going to say before he said it.

"You're in serious trouble," he said to my guy, which made me want to kick him.

"I can tell you right now," he continued as he gathered up his notes with something like glee on his face, " you have Parkinsonian syndrome!"

That made it three neurologists in favor, to two against. But notably, two of the three in favor were young neurology residents and the third, the senior neurologist, apparently didn't know that eating dairy products interferes with the uptake of Sinamet which has been known for thirty years.

The resident disappeared to lay out his findings for his boss. We waited for forty minutes before we were called in. My guy was now not only tired but hungry.

The senior neurologist, his boss, was a charming and intelligent woman who asked interesting questions. She apologized for keeping us waiting and explained that they had been having quite a debate about her resident's diagnosis. She did her own physical. I told her I had questions as to why no one wanted to consider that his symptoms might be due to traumatic brain injury or deranged populations of gut bacteria. She told me to please hold my questions until she had asked all of hers, but to give her her due, she did come back to them after we recounted the history one more time. She acknowledged there is interesting work on the relationship between gut and brain. As to whether his symptoms were the result of traumatic brain injury, she thought it was possible but there is not much one can do for that. She was interested to hear of his improvement after the Sinamet was stopped. She was interested in the Montreal Cognitive Assessment test results, and wondered if we would mind going to see a colleague of hers who might be better able to figure out what was going on in that regard. She said she'd have her staff set up that appointment. She asked how much help we were getting from the LIHN and when I said 10 hours a week, she said she would try to get us more. (She did try, but failed.) She then had her assistant make a follow up appointment for November, many months away. We had thought we would work with her clinic's physiotherapists in the interim. We made an appointment for the following week but cancelled it when we realized how hard it was for my guy to get out of the house. Besides, the LIHN physiotherapist had agreed to come and do an assessment: when he arrived, he decided he would work with my guy himself rather than send in a junior. He came to the house for six sessions and was very helpful. We switched to a private physiotherapist after that, a man who had worked with my guy before he got the flu and agreed to come to the house.

When he came the first time and we told him what had been going on, he said: "I always knew he didn't have Parkinson's, or any syndrome like it, no way."

One of the nurses at Providence had said the same thing.

What did they see that the neurologists didn't?



Improvement continued, slowly, slowly. At first it was two steps forward, one back. Then bad days came every fourth day, then every fifth, sixth, seventh and so on. We were pretty sure this was due to daily physio exercises, careful diet, 12 hours sleep a night, vitamins, wild salmon oil, and no medications. My guy kept saying he felt as if he was healing.

In early May, a few weeks after our visit to Baycrest, we got a letter from the office of a neurologist at Sunnybrook Hospital. My guy was offered an appointment for mid July, 2019.

I phoned Baycrest and left a message for the movement disorder clinic's nurse. I said: July, 2019 is 16 months away. My guy is 75. Who knows if he'll even be with us then?

Another appointment letter soon followed, this time from the office of another neurologist at Baycrest, the same man, as it turns out, who is the friend of the friend of my cousin in Israel, the one who said he couldn't get his own patients moved to the top of the movement disorder clinic's wait list, you'll have to wait your turn. His office offered my guy an appointment in June, 2019, 15 months away.  I looked up his publications. He seems to be interested in the clock face portion of the cognitive assessment test. I frankly did not see how that could address my guy's movement problems and no one at the clinic called back to explain the connection.

But that made me wonder: did my guy's sense that he was healing include his capacity to draw clocks? I asked him to make one saying 2:30.  He drew a near perfect circle, put the numbers in the right places. The hands were drawn the same length, and the numbers were not laid out with the precision he always deployed before he became ill, but it was clearly a normal clock, not a Salvador Dali version like the last time. I asked him to do the finger articulation exercise the neurologists had asked him to do when they examined him. The left hand was fine, the right still slow, but he could make each finger move appropriately. I asked him to stick out his tongue to see if it quivered, a test done by the speech language pathologist when looking for problems associated with Parkinson's. No quiver. The last time I'd asked him to try it, it had quivered.

We got a call from Baycrest saying that someone had cancelled, my guy could have an appointment with the clock face neurologist in a week instead of having to wait until June, 2019.

I asked him if he wanted to go.

Forget it, he said.