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.