Friday, 10 August 2018
The day he came home is a blur. Yet I have one strong recollection--like an overhead shot taken from a room above Providence's main door-- of me standing outside at the curb in the brisk morning air as they loaded him on a gurney into a medical transport van. There is a bright red jacket in this image yet I am not certain whether he wore it or I did. This obliteration of boundaries happens all the time when one has been part of a couple for more than 50 years. His body becomes yours, his memories are events that happened to you, and vice versa. I think I was elated but maybe that emotion was his. It's more in keeping with his nature. It's more likely I was anxious.
They bumped him in a transfer chair up the front steps to the house and into the front hall. They also brought home his wheelchair while I brought the metal walker I'd purchased for him at Providence in our car. They helped him get to the stairlift and he rode it up to the second floor. It was hard for him to get settled on its chair, hard to put his feet in the right place on the fold down platform, hard to learn how to use the controller that sends the chair up or down, hard to change the chair's orientation, to make the seat-belt work. It was even harder to remember how to turn the damn thing on after we inadvertently turned it off. With each mistake, I panicked. What if I couldn't get the stairlift going again? He'd be stranded. I probably phoned the company that installed it five times over the next three days. Yet the stairlift worked well, it was me who kept screwing up. And the bathroom was fine too, all the handholds were exactly where they needed to be, there was plenty of room for a big man using a walker.
He'd been away for two and a half months. In the US, if he'd been ill in hospital that long without sufficient insurance we'd be bankrupt. Give thanks for where you had the good sense to be born, I wanted to shout. Dad, you were right but also wrong.
My guy seemed pleased to be home.
The first night, I didn't sleep much, listening in case he needed help. And he did.
The next morning, the first of a series of personal support workers arrived at about 8 in the morning, sent by the Local Integrated Health Network's contracted supplier of home care. A worker was supposed to come every morning for the next week to help get him up and dressed. He was entitled to one hour of care (which in real time as opposed to care time is no more than 45 minutes because 15 minutes of each hour is travel time). During that week, my guy would also be assessed by senior coordinators who would determine his actual allotment of publicly-funded care and the duration of same. It didn't matter what some doctor or hospital physiotherapist had to say about his needs, the LIHN makes its own decisions. He was in no condition to be left alone in the house, yet in that first schedule no time was allotted for me to go out for simple things like groceries.
The city is divided into regions each served by a single contracted supplier of public home care--they employ RNs, practical nurses, physiotherapists, occupational therapists, personal support workers. They are supervised by the district LIHN's care coordinators. You'd better get on well with them unless you have sufficient funds to hire private care. (The cost of private help is about $100 for a minimum of four hours. Personal service workers do not get paid $25 an hour, though they clearly deserve it. Their cut of the private take is just a tad higher than minimum wage.) I'd had a few run ins with the care coordinators of the home care supplier in my mother's district. There were many, many failures to arrive on time, and failures to assist her private caregiver as required by their own determination of her needs. I'd become used to dealing with that sort of trouble: I had learned to keep asking for the supervisor, and then the supervisor of the supervisor, going all the way up the food chain until I got to the CEO. This is not easy. Staff members don't want to attract the attention of the CEO when a complaint is involved. Yet CEO's of organizations delivering publicly funded home care generally like to keep their clients happy, and are determined to prevent them from running to the LIHN or the Ministry of Health to complain. Journalists are good at getting through the bureaucratic spread-the-responsibility-so-no-one has-to-fix-anything evasive maneuvers that result. So it's those not so good at raising a ruckus who suffer when things go wrong. As they did, and right from the start.
The LIHN's assessment personnel had been to see my guy after his previous hospitalizations, had ordered physiotherapy for a few weeks after the last concussion. They had been notified by Providence to reopen his files and had made appointments with me to come to see him again. I remembered the occupational therapist very well, a cheerful, bright woman very determined to work the system as hard as possible to get her clients as much help as possible. The LIHN's overall care coordinator was not so cheerful, more soulful, but very able and equally determined to help as best she could. The level of help we would get would depend on their professional judgement leavened by the available budget, a budget which has barely moved over the last ten years in spite of a 30% growth in demand for help. That budget had already been stretched to the break point by late spring because 2017/2018 was a bad flu season. Did he need physio? I thought that was obvious. At Providence they thought it was obvious too. Our doctor asked for it. Yet the LIHN could refuse it. Did he need a specially measured walker, a specially designed wheelchair? Did he need a wheelchair at all? The wheelchair became a matter of contention. If he was able to walk a little and wasn't sitting in it all day, why did he need one specially designed to fit his body? Use outside didn't matter. He could use an ordinary wheelchair for that. The one he'd been sent home with was really expensive.
In my area, public home care is provided by a non profit affiliated with a downtown teaching hospital. In the daily forty-five minute period actually allotted to him, the personal support worker assigned to him by that organization was expected to help him get out of bed, get to the bathroom and to the shower bench where he would wash, shave, and dress, then help him get to wherever he was having his breakfast. They were also tasked to make the bed, carry down the dirty laundry or any garbage. I only repeat what their orders said: I know because I was given a copy.
But that's not what happened.
The first morning a tiny woman knocked on the door. She was late yet actually on time, as is explained on the non profit's voice message system when you call in to find out where the hell your worker is. On time means 15 minutes on either side of the appointed hour. I had to give her a short lecture on my guy's condition, because she knew nothing about him when she arrived, and to explain what she could expect given his unnamed disorder, how to use the new shower without getting soaked herself, where his clothes were, and his shaving equipment. She had arrived without plastic shoe protectors so I had to tell her to take her shoes off to use the shower. She didn't like that. She looked at my guy with something akin to fear. She said she did not shave people: she said she was not allowed to. So after I showered him, with her looking on, I shaved him too. She helped him get dressed, took a poor stab at the bed-making which I decided then and there I would do myself, left the laundry and the garbage disposal to me, and went on to her next client. I got on the phone and explained to the supplier's care coordinator that we were going to need a man or woman big enough to help my guy, that the small woman they had sent had quite obviously been afraid, and perhaps did not have the necessary skills deal with a big man with movement issues on a damp floor.
The young care coordinator, a woman who spoke extremely quickly on her voice mail message, as if seriously pressed for time, yet also sad and tired, said there weren't many men available, that would be a problem.
I explained that they'd have to dig some up someone big enough somewhere, or there would be an accident. I explained I had ended up doing most of the showering. And the shaving.
The next day, they sent a man. Again, I had to explain my guy's condition, had to explain about his slow movements, had to make sure the worker learned how to use the shower without getting soaked himself. This worker also said he was not allowed to shave anyone. So I did it. And I made the bed, and took down the laundry, and the garbage, and brought up the breakfast.
The next day again someone new arrived--a woman. Once again, I had to train her in my guy's issues, make sure he got safely into the shower, make sure she learned how to use it without getting soaked. Again, this person said she was not allowed to shave him. So I did it.
By the fourth day I was beginning to wonder why they sent anyone at all since I was either doing the work or supervising it. While they stood behind him watching him struggle to the bathroom, I was making the bed, fishing out his clothes, then running to the shower whenever the worker called for help. Which was frequent.
On the fifth day, no one came. When I called in, I was told the worker, yet another new one, was going to be late, very late, more than an hour late. I told the care coordinator to tell that worker not to bother, I wasn't going to leave him lying in bed that long. That was the morning I discovered that I could do everything that needed doing, including showering him myself and that he preferred that I do it. And why wouldn't he? Four mornings in a row he'd had to stand stark naked in front of total strangers as they washed him. My guy is not shy. But many people are. (If it had been me, I would have said I don't care how dangerous it is I'm going to shower myself, you wait outside.) There was no time for him to get to know these people, unlike at Providence where the same small group of nurses helped him every day. I wondered: how upset would a person with Alzheimer's or some other form of dementia become when faced every day with strangers yanking them out of bed and pulling their clothes off?
And yet, looked at from the worker's point of view, they had more to complain about. Every new client was a steep learning curve. The fact that they managed to address each person's needs at all was a testament to their adaptability. Almost all were new immigrants, most with very different styles of life in their former countries. In this job, they were poorly paid members of the precariart. They were under constant stress to get on to the next client waiting in the queue. They had to arrive on time, leave on time, get to the next household on time and a lot of them did it for 10 hours a day, six days a week, if their employer asked them to. This would be barely manageable even if all the clients were mobile and didn't hold them up. One slow poke would blow the whole schedule. Toronto traffic is so bad that getting from one point to another on time is more than difficult. In small communities up north, the geographic range covered by personal service workers can be very large. My guy is a terrible challenge to this system. A movement disorder means he can be extremely slow getting from bed to shower and out again. Rushing will end in disaster. Forty-five minutes is not time enough to get it all done. If my guy was having a slow morning, and he has plenty of slow mornings, though they tried to conceal it, most workers became agitated, keeping careful eye on their watches, which bothered him. Being a nice guy, he tried to send them on their way early, even if they weren't done.
That morning, I was tempted to tell the LIHN to forget sending workers, we'll manage ourselves. Yet I didn't. After only a week of being on call 24 hours a day, I knew I would buckle under the strain without help. Not only was I doing most of the work of caring for him, I was doing all the meals, the clean ups, the laundry, helping with his business, doing my own. And somehow I had to get out of the house to get food.
So I kept my mouth shut.
The two senior care coordinators came separately to see him. They had both assessed my guy before. They were amazed that his parkinsonian syndrome diagnosis had been chucked out, that he was no longer on any medication, that without the Sinamet he was actually improving. This never happens to my clients, cried the occupational therapist, this is thrilling! The other coordinator was so happy to see him doing better without medication that she promised to speak to the lead physiotherapist and beg him to send help along. But she also warned me. She said: you know the people they'll send are fresh out of school and won't have much experience with neuro-degenerative disorders, but I'll try to get it done. And she did. She also ordered 10 hours a week of care for the next five months, including three hours on Friday afternoons so I could do grocery shopping. But none of that dealt with the real problem, the never-ending turnover of workers, the daily need to train a new person.
The film crew arrived and shot their film ( he performed almost as well as he used to when he was an on-camera public affairs TV reporter/director years ago). By then, the junior care coordinator had sent in a new personal support worker each day for eight straight days. After the film crew went home, I got on the phone and raised hell.
I know what you're thinking: how dare you complain about a publicly funded system that cares for a person in hospital, and then, after the patient is sent home, provides trained people with real skills to come to the door to make sure that patient is properly washed, dressed, fed and any wounds attended to. It is a testament to this society's determination to take care of everybody that we have such a system at all.
But even the most well-meaning systems can break down, especially when starved of funds year after year, as the home care system has been. And because it is starved, people who might have managed well at home if they'd been attended to sufficiently, end up back in an acute care hospital or in longterm care both of which cost a hell of a lot more. The home care system was invented to take the pressure off both, not to be part of a revolving door problem in which sick people are sent home from hospital too early and either end up right back on a ward, or permanently warehoused in long term care places so understaffed that someone like Wettlaufer can go undetected for years.
When I picked up the phone to complain, it wasn't just about helping him, it was about saving me. I had finally understood that if this pace kept up, and I got sick from overwork and lack of sleep, we would be in a disastrous situation.
I forced myself up the hierarchy of the home care provider, starting with the junior care coordinator who got the brunt of my rage, a blast sufficient to make her cry which made me ashamed. I was passed to a supervisor, and from there to another, and with each handover I kept saying: are you the CEO? No? That's who I must speak with. Finally I got a call back from a young man. He asked what I was calling about. I said: are you the CEO? No, he said, he was the CEO's assistant. I want to speak to the CEO not to you, I said. I need to speak to the person responsible for this system. I am a journalist and this experience had been so bad that I am going to have to write about it.
Lo and behold--the CEO herself called me back the next day.
After I explained what we'd been dealing with---eight straight days of new faces, eight straight days of me training each caregiver, eight days of no phone calls when the caregiver was going to be late, but with me having to call in to find out if someone was coming, eight days of carrying down the laundry, the garbage, making the bed, supervising the showering and doing the shaving-- I said I had had enough. I said this was a completely incompetent way to manage a home care system and I wasn't going to stand for it. And I was going to write about it.
She apologized. She told me stories of what happened when her own mother needed care, how she herself, for many years an RN, had been helpless to get the help she knew her mother needed. She sent me documents demonstrating plateaued funding in the face of the growth of demand, lobbyist papers arguing for more investment in home care, as opposed to hospital care. One pointed out that there might be a strike of personal care workers in Ontario this fall-- because personal support workers are getting unionized and a first collective agreement is being negotiated. Inevitably, and appropriately, labour costs were going to go up.
She promised that her organization would try to do better, starting with a meeting of coordinators at our house. An RN would come along with them.
When they arrived, they trooped up to my guy's office. At first they were defensive as I told them what had been going on. They weren't happy to hear it. When I told them I didn't blame them, I just wanted to know how it could be fixed, they promised changes would be made, that my guy would be assigned the same workers who would be instructed to call when they were going to be late or early, who would be instructed to provide the services required, not leave them to me. He would not have to face strangers every morning anymore, and I would not need to instruct on a daily basis.
I said fine, but I'm still going to write about this.
I could see they were actually pleased by that. Why? Because they don't like being unable to deliver, they don't like having to say no to the provision of care they know will prevent their clients from relapsing, they don't like having to ration what they know is essential. They wanted someone on the outside to shake the politicians' cages, to get things moving, to raise Cain, to get more money from the public purse spent where it's really needed, not wasted on some shiny atrium with a shiny donor plaque on a shiny new hospital filled to the brim with patients but chronically understaffed. The medical system is a human endeavor. Machines are well and good, but without sufficient humans to manage and deliver care, they are useless.The people who provide care deserve to be properly paid and to work reasonable hours in order to make a living, not the kind that induce breakdowns.
In the end, I found myself thinking the only reason this system works at all is because of the determination of the individual caregivers who try to make a go of it no matter what.
Unfortunately, and yet predictably (my Dad did predict it and he was not alone) no matter what is what we've got.
Friday, 3 August 2018
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.
Friday, 27 July 2018
As the days and weeks went by, my guy made slow-- achingly slow-- progress. Context is everything: he'd arrived at Providence unable to even turn himself in his bed, so it was great progress when he got to his feet in the gym (okay, yes there were two physios on either side of him, and he was holding on to a walker with white knuckles, but still). It was also progress when, with the aid of what is called a saskapole, he was able to pull himself on and off his bed and into and out of a wheelchair using his own muscle power instead of the Hoyer (something he began to do not long after they stopped the laxatives he didn't need and the blood pressure drug that made him dizzy). When the saskapole was first put up in his room, at his insistence, but against the better judgement of his physiotherapist, he got cocky and tried to use it without a helper: he ended up sliding to the ground like a talent-free pole dancer while his roommate pressed the help button.
Gradually, he began to take over more of his own care, shaving himself, washing himself in the shower, achievements proudly reported by his nurses (he put on his socks today!) who were great cheerleaders. But there was no hiding where everyone at Providence thought he would get to in the long run: the occupational therapist wanted us to order a wheelchair designed just for him because that was his future. What else to expect with the diagnosis of a neurodegenerative disease? There could only be regression. He would never be as able as he'd been before he got the flu when he'd climbed up and down the stairs several times a day, and did it more easily than walking. They wanted to teach him how to "walk" in a wheelchair using his heels and legs to pull himself along, rather than his arms. The lead physiotherapist had a theory that relying on his strong upper body was a mistake, that he should work hard to rebuild his legs. And this turned out to be the correct strategy, as you will see, though the results would surprise her. I measured the door openings at home to make sure the bathroom reno would permit a wheelchair or commode chair to roll in and out and ordered two stair-lifts, one to an outside door, one to the second floor, because, so far as the physiotherapist and the occupational therapist were concerned, there was no way in hell he'd be able to climb or descend our stairs again. It was suggested that we might need a saskapole by the bed and in the bathroom too.
In other words, as a friend of mine who died young from a medical error used to say: situation bleak.
And yet: as I ran around doing the things that needed doing I refused to dwell on bleak. The fact is I didn't really believe the diagnosis and so I didn't really believe the prognosis either. But truth is more than facts. The truth is I could not get my head around the notion that he would not improve. And neither could he. We have both spent our lives doggedly working at difficult problems until we conquered them or failed with honor. The belief in the inevitability of progress through hard work is a habit of mind rooted deep in both our childhoods. ("Just put your head down and bull your way through," my Dad used to say. "If at first you don't succeed, try, try and try again," his Mom used to say.) We could not just shake off our belief in that belief. and besides; he was improving daily, if only in tiny increments. There were good days and bad. First he had a good day followed by a bad. Then he had two good days followed by a bad. We thought he could do stairs again, that he would do stairs again if they would just let him try. But they didn't want him to try, not without big people standing by. We didn't see the virtue of building the legs and letting the arms go to rack and ruin: we asked if he could do weights. No, they didn't want him doing that either.
We were directed instead to practice using the wheelchair, and later, getting in and out of a stairlift. Providence has a small stairlift set up on a short staircase in a big room on the basement level of the main building. He practiced getting out of the wheelchair, using a walker, and then getting himself on and off the stairlift. It went well. He smiled and waved like the Queen as he sailed up and down again.
One day, the wheelchair people brought in a snazzy one for him to try, much lighter than the generic wheelchair he'd been using, with cushioning designed specifically for him. I had to learn how to disassemble and reassemble it in order to get it in and out of a car. But at least I could lift it. Standard wheelchairs are very heavy. The company that would actually supply it, with a government subsidy of 85% of its cost if the Local Health Integration Network officials approved (not a forgone conclusion as I would discover), is also a listed supplier of other needs like handholds to screw into door frames, like commode chairs that can roll right into and out of a shower, like a saskapole. Each for a price. A hefty price. The wheelchair, even with the subsidy, had a really hefty price. People who have no money do the same thing with these devices that they do with prescriptions for medications they cannot afford: they don't order them. The medical aid business is growing almost as fast as funeral homes what with baby boomers learning first hand that aging is not for the faint of heart and that death, unlike taxes, actually is inevitable. (Taxes, as the rich know, can be avoided by means of incorporated shell companies in tax havens where the sun always shines.)
About two and a half weeks after he was admitted to Providence, the social worker on his floor made an appointment to discuss his discharge date. They wanted him out by the 23rd of March, one month after he was admitted. That discharge date had been on the weekly schedule set out on his bedside table as soon as he arrived, long before anyone knew what his rate of recovery might be. Apparently, they intended to stick to it come hell or high water. I explained that the bathroom reno might take more time, and he couldn't come home if he had no bathroom. Similarly, we had to wait for the stairlift which had not yet arrived from Britain. Also, I told her I wasn't sure how I was going to manage even with the finished bathroom and a stairlift. He needed help with everything from getting to the bathroom to dressing to getting to bed. While I could screw handholds to door frames so he could haul himself where he needed to go, there were no young nursing students available at our house to lend a hand when needed. I work, I explained. I cannot be a full-time nurse.
I wasn't to worry about that, she said, help would be made available through the Local Integrated Health Network. But not for more than 45 minutes a day if my mother's experience was any guide, I said. I begged for at least another week past the original discharge date. I had no idea that begging was not necessary: I could have simply refused that date and refused any transfer to another facility, and they would have had to accommodate us, as the story below makes clear. I explained to the social worker that a film crew was coming to shoot a film on him at the end of the month, so would it okay if they shot it at Providence ?
They had never had such a request before, permission had to be sought, she said. The care coordinator seemed particularly pleased at the prospect.
In the meantime, roommate John was going home on weekends, although his blood pressure was being driven up by stress at home. We heard all about the problems of his life, just as he heard all about ours. One day I arrived to find his wife very upset. She was an admirable woman in many ways, not least because her fingernails were always perfect in spite of the hard work she did all day. She wore her hair in a ponytail and dressed in oversized sweatshirts as if in her own mind she was still a lithe teenager hanging out with friends after class. She was feisty. She was kind. She was smart. She was running herself into the ground trying to take care of everything and everyone she cared about. She said John was going to be moved to another room down the hall, a three bed room. He was unhappy about it. I was unhappy to hear it. He and my guy had each other's backs, for one thing. Our families enjoyed each other's company for another.
Why? I asked
A man with insurance entitling him to a two bed room is getting this bed, said his wife.
But we don't have insurance either, I said.
A rebellious/defeated look flashed across her face. It said, without words, that the haves are always treated better than the have-nots in our everyone-is-equal medicare system, and that she and John are have-nots. When John got back from physio he said that if he didn't like the new room, he'd just go home and not come back.
A few nights after John moved, my guy was awakened by a bedlam of grown men bellowing at each other. Apparently John had come in late and turned on his bed light which disturbed the man in the bed next to him, a man who had been in that bed for no less than two years, a man who steadfastly refused to be discharged from Providence and gave new meaning to the word difficult. When I stuck my head in to see how John was doing the next day I found him in a dark and crowded space. He said he was doing fine. I said I'd heard he'd been in a fight. He grinned and said he liked a fight. Not good for the blood pressure, I said. Yeah sure, he said. Did I know the long wait for help between 4 and 11 p.m. was happening again? He couldn't understand why. The fix was so simple and wouldn't cost Providence a nickle. They just needed to bring on a second shift of nursing students between 4 and 11. Nursing students must do rotations in hospitals as part of their course work. There were more than enough students to go around.
Brilliant, I said, I'll go and suggest it to the care coordinator.
So I hunted down the care coordinator and gave her John's suggestion.
Great minds think alike, she said, we've just started to move on that. Would you like to be on a community advisory committee?
I don't live in this community, I said, and besides, it was John's idea. Why don't you invite him?
Her blank face made it clear she had no interest in John at all. I'll think about that, she said.
She may have thought, but so far as I know, she did not invite.
I arrived one morning to find the new roommate on John's former side of the room, a man in his early fifties. Call him Tom. He was sitting in a wheelchair beside his bed, staring at nothing. His TV was not turned on: it was broken and no one had come to fix it. He had no reading material. He had spectacular tats that run up and down both arms and across his chest, the kind seen on made members of the Russian Mafiya. As he was wearing basketball shorts and a sleeveless shirt they were on full display. I wanted to ask him about them and about his life in general but he'd had a stroke that was so bad he could not speak. He could barely swallow: the speech language pathology people kept bringing him jellied liquids instead of water to drink, though his lunch tray had had things on it that he shouldn't have had. When his meals came, he choked, and choked, and choked, sending me running down the hall repeatedly to find a nurse to clear his airway. As we would learn, he had been in this state for months, first at another rehab hospital, then at home. He'd spent most of the last year on a bed set up in the family room.
I didn't see any of his family for some days. I wondered, at first, if he had one.
Then his wife appeared one afternoon with his mother. Their problems made ours look small. First, they don't live in Toronto but in a smaller town east of the city. Tom's wife looked significantly older than her years. Short, spikey hair, makeup to hide exhausted eyes or at least to avert attention from them, a tad overweight, desk-bound overweight. As long as she was in the room she never stopped fussing over him: he hadn't shaved, hadn't had a shower, she determined these things asking him yes or no questions which he answered by affirmative or negative nods. She spoke in a loud voice, an irritated voice which I recognized because the same voice kept emerging from my own mouth whenever I came in and found my guy in bed, or his physio cancelled. She had found Tom in need of changing so she went charging down the hall looking for his nurse. I'd grown less angry about that sort of thing, mainly because it happened less frequently than when my guy was first admitted. But Tom was new to Providence and she'd been managing his care to her own high standard at home for almost a year in spite of the fact that she also had a full time job as an investigator. She'd had their family room wired with video cameras so she could check on him from her desk at work.
Her husband, she explained when she came back, had been an undercover cop for years, on a drugs and gangs beat, which is why he had those tats, and probably why he'd had the stroke, it was all those years of unbelievable stress, of living a lie every day and wondering when the people he was setting up to be arrested would figure that out and kill him.
His mother, a sweet woman with a June Cleaver face told me later, while Tom was off in the gym, that Tom had been athletic all his life, played every sport there is, and that after his stroke made it impossible for him to walk, let alone run, he'd just cried, and cried. You mean he felt defeated? I asked. I could see that some days he refused physio and just stared at the TV. Yet as the days went by, the physiotherapists helped him get better control of his body and the speech language pathologist taught him how to control his breathing so he could utter a few words. Though his choking continued, the nurses taught him how to make it stop on his own.
As I watched his progress I began to think Providence was living up to its name.
I arrived at Providence at 8:30 in the morning to take my guy to his appointment with the neurologist at Michael Garron Hospital. His day nurse, a tiny woman who was fiercely attentive to her patients' needs, who did everything she could to make things go smoothly for them, had put him at the top of the shower list. Though I arrived early, he was ready to go.
I haven't said enough about the nurses at Providence, both male and female. There was a terrific male nurse who had been a doctor before he immigrated to Canada from Albania in order to better the lives of his children. He'd figured it was faster for him to get certified in Canada as an RN than to redo medical school and wait in line for a residency. So he had sacrificed himself, and yet he was not bitter. His children were doing very well at school, thank you. He made it his business to buck up the spirits of his patients whenever he could, especially the men who were so downhearted at the loss of their strength. When my guy pulled himself along in the wheelchair in the hall, he'd praise the smallest improvement. Then there was the tiny Philipina who had two children at home, but worked most days without stopping to sit down for lunch, worked until her skin took on a grey tinge from exhaustion, then went home and worked some more. And how about the woman from the Caribbean, tall, slim, who handled my guy without breaking a sweat, always with a kind word, always encouraging. And there were so many students who came, in their burgundy uniforms, from everywhere on earth, earnest young men from Pakistan, young women from Brazil, from Somalia, from Ethiopia, some wearing hijabs, some with their hair swinging free, all with that inner glow that comes from helping others, that comes from knowing you can. It's a noble calling, one of them said. I coudln't remember the last time anyone I knew used the word "noble" in conversation.
We went downstairs and out into the brisk morning air to wait for the wheelchair taxi which arrived exactly on time. The driver rolled him in his wheelchair through the van's back door, fastened his chair to the floor, and off we went.
The neurologist' s office was off a dark hall lined with patients filling all available chairs. The neurologist kept us waiting long past the appointment time, but I didn't worry because I had brought a Sinamet with me in case we had to wait past the time when he was supposed to take it.
The neurologist was a tall, lanky man in his middle forties. He made it clear right from the start that he would not be taking on my guy's case. I don't do Parkinson's, he said. But perhaps we could tell him what had been going on?
We raced through the issues, explained that we'd had a problem with the neurologist assigned by St. Mike's, and gave him the whole story as quickly as we could.
Would you let me examine you, he asked.
That's why we're here, said my guy.
Carefully, slowly, he went through the same physical tests done by the neurological resident at St. Mike's which had produced a diagnosis of Parkinsonian syndrome.
"Well," he said. " I don't think it's Parkinson's or anything like it."
That's what the very first neurologist said, I said. He'd ruled it out. And the doctor at Providence said the same thing. But if it isn't Parkinsonian syndrome, what is it?
"I have no idea," he said.
Well would you take me on, my guy asked. I like you.
No, he said.
Something made me wonder if he had tangled with our former neurologist, or had some fundamental disagreement with the way neurology is managed at St. Mike's
Would you care to comment on the fact that a resident made this diagnosis and the neurologist we were assigned is an epilepsy specialist?
No, he said.
Is this about medical politics? I asked.
I can't comment on that, he said.
Which was of course a non denial denial and in my world, the equivalent of a yes.
Well, what should we do? My guy asked.
I think we should do a test while you're at Providence with nurses and doctors to help you, where you're safe, he said. I want to run an experiment. Let's stop the Sinamet and see what happens. If you get worse, the original diagnosis might be correct. If you don't, well....
You mean stop the pills right now?
That's right, he said.
Twenty four hours later I came to his room to find him sitting up in his chair with his ankle over his knee, the way he used to sit, but which he hadn't done for months and months. His voice was stronger, more his normal register. And there was something else, a brightness to him that I hadn't seen for a long time.
You're feeling better, I said.
Right, he said, with a grin.
When Daughter Number One came in she was astonished.
His voice, she said, the way he's sitting, the way he's talking, it's like Dad's back.
Friday, 20 July 2018
I had a chip on my shoulder as big as the moon by the time I got to Providence on Monday.
I had had words with a nurse on Sunday because I had found my guy in bed with robe and sheets that needed changing and it was past 10 in the morning. He'd been in that state since before breakfast, and breakfast at Providence is about eight a.m.. She didn't appreciate the way I came right at her: she let me know it. I didn't appreciate the usual excuses--it's the weekend, there aren't enough staff available, that's just the way it is. It had taken a few moments for me to pull my anger down to a dull thrum, to apologize to her for being demanding, which I did, not because she deserved the apology, my guy did, but because I was doing him no favors by losing favor with her. It was at this point that I understood why patients do not always complain about inferior or even sadistic treatment. He was at her mercy. So I had changed my tack and asked her how I could help. I had said I would be pleased to change his gown and bed if that worked for her, all she had to do was point me at the right cart for the linens. She had in turn adjusted her tone from "don't you be snippy with me" to neutral.
But by Monday morning I was furious at this situation. Why should he have to be uncomfortable for hours until I arrived or until someone on staff managed to fit his needs in among their many other duties? Why should I have to insist on reasonable care in a humble tone so as to avoid retaliation, subtle or otherwise? And why had so much of the burden of care shifted to the family? The treatment at St. Mike's and here was beginning to remind me of what I knew of developing countries where families must sit around the clock with their loved ones, bringing them food, pillows and blankets, even medicine. I was coming to see him every day, as was daughter Number One who lived close by. (Daughter Number Two had moved to another city and could only check on him by phone.) I was doing his laundry at home, bringing him coffees and newspapers, shaving him, making sure his lunch tray came on time, taking it away when he was done, making double sure he got his medication, working on bed exercises with him to help him get some muscle mass back in his legs. After a few hours of that, I drove back home again across town to take care of business and, after that, to supervise the doings of the contractor renovating the bathroom at light speed so he could come home at some point.
And what about him, the patient whose needs are supposed to be front and center in this system?
I thought Providence had brass nerve to claim it offers patient-centered care on a banner strung across a wall in the main entry hall. This sign trumpeted the recent merger between Providence, St. Michael's and St. Joseph's hospitals, along with a gag-me-with-a-spoon vision statement. The phrases patient-centered, or worse, client-centered care, appear on the brochures and websites of most of the health care institutions I have dealt with in the last few years and on most of the documents produced by the various regulatory Colleges charged with protecting the interests of patients. But these are words, not deeds. What we actually have in Ontario is budget-centered care, which is exactly what my Dad predicted so many years ago.
Newspapers and magazines have reported for years that in Ontario's hospitals, patients are routinely stashed in the halls, or in offices, and occasionally even in toilets. because there are not enough beds to go around and not enough nurses to help those patients stuck on narrow gurneys waiting for one. Their families must help them. That is because hospitals have been closed and nurses let go in significant numbers ever since the Rae government of the 1990s. Ontario is at least 20,000 nurses short of a a barely adequate deck. Nurse Wettlaufer's murders and attempted murders happened in long term care facilities, not hospitals, which is ironic because only long term care facilities have a specific, legally required patient/nurse ratio. That ratio is low which may explain why Wettlaufer often worked alone at night, the only nurse assigned to care for a number of inmates. She made frequent mistakes while helping herself to drugs not kept under lock and key and not properly accounted for. She was able to relieve her personal demons by killing patients who irritated her, injecting them with purloined insulin. In this so-called patient-centered system, the College of Nurses of Ontario, the regulator of the province's nurses, didn't catch her, though there were complaints; her employers didn't catch the murders, though one did fire her for bad habits yet gave her a reference which allowed her to work elsewhere; her colleagues didn't catch her; her union didn't catch her; and the coroners didn't catch her either -- because they barely investigated the deaths she caused, even those that were medically surprising. She finally outed herself to a psychiatrist, who turned her in to the police.
Most of these failures-- to catch her, and to properly staff acute care and rehab hospitals--can be traced back to the same sin, administrators making short-term money-saving decisions, which in the longer term cost the system much more.
I was beginning to think these vision statements were a result of cost saving too, that they were churned out by one PR guy who keeps his fees low by recycling the same meaningless phrases. Or maybe an AI writes them now -- that would be cheaper still.
My guy was in bed and not wanting to get up. Dizzy, he said. So dizzy. The nurse, when I hunted her down, explained that he complained of waves of dizziness every time she asked him to turn over to give him a sponge bath or to help him change. But progress was being made. A physiotherapist would be in soon to work out a program for him.
In the meantime, I went in search of the patient care coordinator to complain about the slow response time on the previous Friday.
It being Monday, she was in her office. When I explained that it had taken 40 minutes for a nurse to respond to my guy and his roommate's calls for help, and that, in addition, a nurse had been verbally abusive to a patient down the hall, she said with a certain bureaucratic je ne sais quoi that she would have to confirm these complaints with the actual patients involved, that my second hand report was insufficient.
Fine, I said. I went back to the room and explained to my guy's roommate that he was going to have to repeat his story to the patient care coordinator personally, she wouldn't accept such information coming from me. He rolled his eyes in his head. His wife did the same when she came in later.
Eventually, the patient care coordinator arrived in the room. There was something about the way she focused her attention on John the roommate and not on my guy, the one who had suffered the long wait, that was just a tad disturbing. I read her manner toward John as edging toward intimidation, as if he had a history of making false complaints and she now dared him to make another. Yet John did not wilt. He and his wife repeated their concerns exactly as they'd presented them to me:"forty minutes, I could have been dead!" he said to her, and "no one should be talked to like that," said she.
Daughter Number One arrived for a visit in the middle of this conversation.
Daughter Number One has knowledge, acquired in her professional capacity, of many of the rules regarding patient care. Daughter Number One asked if she could intervene. Go ahead, roommate John said.
She asked a simple question: what is the ratio of patients to nursing staff between four in the afternoon and eleven in the evening on this floor?
The patient care coordinator said it was in line with the College's rules on ratios, meaning the College of Nurses of Ontario.
Daughter Number One persisted. So far as she was aware, the College of Nurses of Ontario, the regulator, has set out no such rules. There are only ratio recommendations which I would later come across in a brief given by the Ontario Nurses' Association to the Ontario legislative committee on finance and economic affairs in the run up to the 2017 Ontario budget. Ontario, according to the Association, has the lowest ratio of Registered Nurses to its total population of all the provinces in Canada. That ratio has been getting worse, not better, as hospitals strive to meet their budgets by getting rid of full time nurses and hiring agency nurses at three times the hourly cost during upswings in demand. Ontario would have needed to hire 18,000 full time nurses in 2017 to pull itself up from last place to second last. The Nurses' Association also referred in its brief to various studies indicating that in acute care settings, the ratio should be one Registered Nurse ( RN) to four patients. The Association pointed out that the Auditor General had established that in many community hospitals the actual ratio is more like one RN to 9 patients. The Association also cited studies showing that such low ratios lead to an increased risk of patient deaths, not to mention morbidity. Yet, according to the minutes of a recent meeting of the College of Nurses of Ontario, we should not hold our breath until this regulator requires appropriate ratios. At that meeting it was asserted that it is just too hard for the College to figure out what the different ratios should be for the various settings in which nurses work (though other jurisdictions seem to manage). Instead, the nurses themselves are expected to advocate for better ratios with their employers. ( Surprise! the hospitals don't listen.) Daughter Number One was aware of all of that. She was also fairly sure that recommended ratios were not being met at Providence.
So what is that College-required ratio please? Asked Daughter Number One again, sweetly.
I'll try and get it for you, said the care coordinator. (She never did: she could not. There is none.)
So let me be clear, said Daughter Number One, as far as we can tell, there is only one nurse available between 4 and 11 on this floor, and this floor has about twenty patients, mainly stroke victims and people with serious heart conditions. Someone could call for help, but, if that nurse is working with someone else in difficulty, that nurse wouldn't be able to respond to any other patient who might also be having a stroke, or heart attack, or who might have fallen. That can't be safe, she said.
Oh we have a culture of care here, said the care coordinator. Anyone else working on the floor is supposed to respond if a care bell goes off and the nurse is on break or on lunch or with another patient.
No one did, I muttered.
But, said Daughter Number One, there is no one on the information desk after five during the week, and no students after four. We're not complaining about the quality of the nursing. We're saying the nurses seem to have an awfully heavy workload. Have the nurses ever complained to you about that?
No, said the care coordinator, no nurses have complained.
They complained to me, I muttered.
By this point, the attitude of the patient care coordinator had subtly changed from defensively aggressive to concerned. She said she'd take up the complaint about the verbal abuse of a patient with the nurse in question, that she could easily establish who had been on duty that evening (because there would only have been one nurse on duty, I said to myself between grinding teeth) and that kind of behavior is not tolerated. She also said she would also look into the staffing ratio after 4 p.m. Then she left.
Wow, said John to Daughter Number One, that was interesting. Where did you learn to do that?
The physiotherapist appeared. I took one look at her and wondered: how in hell is she going to manage my guy? She was so tiny she barely came up to my shoulder, never mind his. She could not have weighed an ounce over 100 pounds. She brought with her an occupational therapist to take measurements for a wheelchair for my guy, so he could begin to move around on his own. The occupational therapist was also very tiny. Both were sympathetic, very keen, and, as it turned out, wonderfully capable of handling my guy. They listened carefully to his story, with particular attention to his Sinamet schedule and when exercise might be most effective. The physiotherapist said she would organize his sessions around that. Session one was set for the next day.
How about that, I said to my guy. They're organizing around you for a change.
The doctor appeared while my guy was sitting up in a chair, strapped in so he wouldn't fall out, eating another salt-free, taste-free vegetarian lunch. When the doctor crossed the room's threshold, he smiled and asked if he could come in and bring students with him. I would like to give you that doctor's name in order to praise him, but I have kept all individuals' names out of this blog so I can write without fear or favour. I am certain he will get public praise from others. He deserves it.
The doctor was a man in his late fifties or early sixties, with lots of grey in his curls, and a middle-aged paunch. He wore a rumpled striped shirt, no tie, ordinary pants, shoes of no account. He was not a specialist, just an ordinary MD, he explained later, who had been working with neuro patients on this floor for years. First, he sat with John on his side of the room and they had a nice natter about how John was doing and whether it was safe for John to begin going home on weekends. He thought it was. Then he turned his attention to my guy. He smiled again, introduced himself, shook hands, asked how he was doing, asked questions about his background, showed an interest in what he did in life. He'd brought a file with him, which he opened as he sat down and spread over his knee. He settled himself as if he had all the time in the world.
This was the first time since that charming neurology resident at St. Mike's made the diagnosis of Parkinsonian syndrome that a doctor, other than my guy's family doctor, had taken the time to sit down and to ask open-ended questions about my guy's life and state of being. This doctor also made eye contact, he made jokes, he asked us to tell him what had been going on that had brought my guy to this bed. So between the two of us, we gave him the whole history from the beginning to the present. He listened very carefully. He noted the blood pressure issue and the dizziness. Not dizzy now, said my guy. The dizziness seems to come and go.
The doctor asked how his blood pressure had been taken, lying down, or sitting up?
It turns out that matters. It turns out that my guy was suffering from orthostatic hypotension-- elevated blood pressure when lying down. When the doctor took his blood pressure while he was sitting up, which he'd been doing for a while, he found it had dropped twenty points from the morning's reading taken lying down. This phenomenon is apparently well known, especially among elderly patients. The doctor also explained that Sinamet is known to cause high blood pressure.
That was like a slap in the face: no one had mentioned that to either of us before, not the neurologist, not the residents at St. Mike's, even one though my guy had often complained of dizziness and I had expressed concern about his suddenly high blood pressure when he was admitted. One resident had made an oblique comment about how a drug for one problem will cause others, you take the bad with the good, but he'd never said Sinamet could have been the cause of the onset of high blood pressure in a man whose blood pressure had always been steady as a rock. And because it was never mentioned, I had never Googled high blood pressure as a side effect of Sinamet. If I had, I wouldn't have offered my guy extra Sinamets whenever he was having a bad time.
The doctor asked for permission to do a physical exam.
Sure, my guy said.
He felt his arms, checked his reflexes, did a number of things I had seen done before by the neurologist and the neurology resident.
Well that's interesting, he said when he was done. I'm not convinced of that diagnosis.
We looked at each other, my guy and I. We had been wondering about alternative explanations for what was wrong with him, everything from normal pressure hydrocephalus to too many concussions in his youth leading to unsteadiness and gait issues which led to the recent serious falls. We had actually talked about whether Sinamet, which is supposed to replace the dopamine no longer produced in the substantia nigra, might also reduce the amount of dopamine naturally generated by the remaining dopamine producing cells in that part of the brain. Most body systems work on a feedback/need basis. A signal is tripped to say that not enough of a substance is available, and so that substance is made. I had been thinking specifically about how this works with SSRI's, drugs which act on the serotonin signalling system of the brain to modulate mood. SSRIs have be be stepped down very gradually when doctors take their patients off them because it takes time for the patient's brain to adapt to different levels of serotonin. Only later would I learn that the same pharmacologist who discovered that dopamine is a neurotransmitter necessary for movement and who led the introduction of levadopa/carbidopa, alias Sinamet, to Parkinson's sufferers, also led the development of SSRIs.
Well, I said to the doctor, we have our doubts too and that's why we asked for another neurological work up at St. Mike's. We were advised that too many cooks spoil the broth.
The doctor asked for the name of his neurologist. We explained that we no longer had one and we explained why. We weren't polite. The doctor admitted that he'd had a few runs ins with that fellow himself. I told him about the appointment the following month with another neurologist at Michael Garron.
Who? he asked.
I gave him the name.
Oh yes, he said, I know him well, you should definitely go to that appointment.
But how will we get him there? I asked.
Don't worry, he said, we do that all the time. But let's just review the medications he's on, shall we?
He read the list out loud from the file on his knee. I recognized most of the drugs he named, though I was surprised my guy was still getting laxatives as that problem had turned into the reverse.
Well let's stop that then, he said, making a note. Then he mentioned a drug I'd never heard of-- Ramipril.
What's that for? I asked.
High blood pressure, he said.
But I thought they only gave him something in the Emergency for that and then stopped. Why is he still on that? Why didn't I know he's on that?
He got an interesting look on his face. Could explain a lot of things, he said. That's why the salt-free diet, high blood pressure could lead to a stroke so it needs to be treated, that's why he's on it. But the thing is, he said, Sinemet is known to cause high blood pressure and Sinamet also sucks salt out of the body...
So he's like losing too much salt for his muscles to function?
Let's take that medication away and put some salt back in his diet and take his blood pressure lying down and then after he sits up, and see where it goes.
Salt? said my guy. I can have salt?
After the doctor left, I ran down the stairs and got salt packets from Tim Horton's so he could splash it all over his next meal. When I came in the next day, I brought him a bag of salty chips. John's wife had already brought him large, full salt shaker. When the physiotherapist came to get him for his session that day, for the first time he was able to cooperate enough to slide sideways on a transfer board from his wheelchair to a bench.
In other words, stopping two drugs and adding salt had already caused a big improvement.
The next day, the dizziness was reduced further. The day after that it was reduced more. The day after that, my guy was able to stand on both feet for longer than a few seconds, with help mind you, but still. He hadn't been able to do that for six weeks.
A corner had been turned.
Which made me think this doctor really knew his stuff, and if he was not sure sure about that Parkinsonian syndrome diagnosis, then it might well be wrong.
Where did that leave us?