Two years is a long time to wait for treatment when you are over 70, especially if neither of your parents made it to the eighth decade. What kind of system asks such a person, any person, to wait two years for help?
A recent survey of Parkinson's sufferers and their health professionals by the Parkinson's Society of Canada found that my guy's just-you-wait experience is not confined to Toronto, where the population is large, or even Ontario, where it is stretched thin over a vast area that neurologists don't often visit. It is pretty much the same across the country. Interestingly enough, the health care professionals surveyed had much harsher views of the system than the patients. The survey makes it clear that waiting six months to a year for the initial diagnosis by a neurologist--necessary to get other public system help-- has become normal. Waiting another year to get expert treatment has also become normal. Few mental health specialists are made available in spite of the fact that Parkinson's Disease is believed to also cause anxiety, depression, hallucinations, and worse. ( I wonder now whether it's the Disease that brings on these issues, or the drugs that are supposed to alleviate it, but that is another story.) Patients with movement disorders benefit from intelligently designed exercise aimed at retraining the misbehaving brain (either by recruitment of stem cells to replace dead dopamine-producing cells, or by teaching clever workarounds) yet the public system is stingy when it comes to paying for physiotherapy. More than 40% of patients have to pay for physio out of their own pockets. They also pay for walkers, bath aids, medications, and wheelchairs, though, with the right diagnosis and the approval of a local health integration network, the government of Ontario will pay 85% of the cost of a "necessary " wheelchair. (Just don't say you mainly plan to use that wheelchair outside. Then they won't fund it at all. Yet a wheelchair assembled with the right parts to fit a particular individual can cost up to $5000.) People with Parkinson's often have trouble swallowing and trouble with making their speech intelligible. Yet speech language pathologists are rarely offered by public systems to patients at home. In other words: a system that was supposed to give all Canadians equal access to publicly funded and excellent medical care has taken equal access off the table. A patient with money will be much better treated than a patient with none. Having to wait two years for proper care cannot be called excellent treatment by any measure.
The results of this survey were published on the Parkinson's Society website just before Parkinson's Month--April. ( As T.S. Eliot tells us in 'The Wasteland,' April "is the cruellest month.") You know a disease has clawed its way to the top of Charity Mountain when it gets its own Month.
And yet it would not be fair to say that the system failed my guy entirely. When the hospital got ready to discharge him, the home care system kicked in. I had experienced it with my parents, and had not been impressed. My mother had been assessed--the word they use--and reassessed, again and again after each of her visits to the hospital, starting with the first time she fell and broke her hip. And after each assessment and care period, her file would be closed. Each time she was admitted to hospital again, and about to be discharged, another care coordinator would call and asked me for permission to visit my mother who is not really able now to give informed consent. Each time this happened, the same questions would be asked. Help was assigned to my mother on the basis of a doctor signing off on a request for home care, because the doctor was convinced that care was needed. But the publicly-funded home care organizations do not take a doctor's order as anything other than the start point. They decide what will be supplied. My mother was eventually allowed 45 minutes a day of help to shower in the morning and be put to bed at night. But soon there were disagreements between the person who provides the bulk of her care daily, paid for privately, and the publicly supplied personal service workers who came and went. I got phone call after phone call from my mother asking where the care worker was who was supposed to help her get to bed at night. Finally I figured out that it wasn't that they were always late, though that's how it seemed. In fact, the care coordinator had changed the schedule without telling us.
It also concerned me that strangers came in and out of her suite every day, that care coordinators I had never met asked me questions about her mind and her body that were invasive. Was this an irrational response on my part? Yes and no. We are all trained from childhood to believe doctors and nurses will behave ethically--we trust that they will hold onto our embarrassing secrets. Mainly we retain this trust even when one of them goes off the rails and has sex with patients, or, in the case of Nurse Wettlaufer, kills eight while failing to kill six more. After all, they are professionals who can be sanctioned by their peers if they fail to do the right thing or actively do wrong. (Theoretically they can be sanctioned: in Ontario the colleges charged with these duties tend to be awfully gentle when it comes to punishments.) But what about personal service workers? What about social workers and occupational therapists and physiotherapists? These are the people who staff the home care system. These are the people we rely on to deliver care that's cheaper than a bed in a critical care hospital whose beds are way too full of the aged and infirm. Personal service workers are not members of a professional body. For the most part, they are men and women--often new immigrants to Canada-- earning just above minimum wage. My Mom's care and comfort had been in their hands for a while. And now it was my guy's turn.
First, a hospital physiotherapist visited him in his hospital room and took him off to a large room on the same floor that functions as a gym. Her task was to get him moving on his own again, to teach him a few tricks that would help him get out of chairs and find ways to walk when his muscles would not obey. Movement disorders are highly variable, but in general either the muscles do things the patient does not want ( such as shaking continuously and uncontrollably.) or, the muscles do not obey because something goes wrong with signalling, or feedback mechanisms, leading to problems walking, balancing, swallowing, etc. He did not have tremors, but he sometimes found himself momentarily unable to move forward, or sideways, or backward, unable to distinguish when he was fully upright or leaning. We have a lot of stairs in our house. The physiotherapist had him practice on a rudimentary staircase in the gym. He suffered waves of what he described as unsteadiness from time to time, but he did well on the stairs. He could use the banisters to pull himself up and to balance on the way down. Then an occupational therapist talked to him and to me about our bathroom setup at home, the distance from bed to bath, the number of stairs, our kitchen. When we finally got him home, strangers called to make appointments to make sure we'd told them the truth. The care coordinator came to assess, followed by an occupational therapist who came to assess, and who told us to get a bench for the bath. She also ordered a different kind of walker for him that was more suitable for a man of his height. A senior physiotherapist came to assess: he decided that my guy was entitled to six sessions at home, the maximum offered.
Physiotherapists who looked young enough to be straight out of university came to the house once a week to help him. They were nice. They were sweet. But after the sixth week, he was on his own. Yet he still needed help. We had been given a list of private physiotherapy places in the hospital. We found one close by, and paid for weekly sessions for most of what remained of that winter.Then a friend diagnosed with Parkinson's flew into town to go to a physiotherapy clinic that specializes in Parkinson's. We recognized the name of the place: it was on the list given to us by the hospital physiotherapist. As our friend reported to a mutual friend, One Step Ahead Mobility was terrific. We made an appointment for an assessment. The physiotherapist who did it turned out to be the same one who'd given us that list in the hospital. It was very expensive, but we figured it was worth the money, and for a time, it really helped. We also heard about Dancing with Parkinson's, a charitable program run out of a community church which charged only a nominal fee for an hour long program.The theory behind it is that people with Parkinson's do better if they move to music and especially if they work in a group.
What can it hurt, we thought. To keep moving, you must keep moving, and better to move with music, right?
We signed up.
By then we were beginning to adapt to the problems of disability. I learned to ask about bathroom locations in restaurants before making a reservation, about whether there was a ramp or steps ( though he actually preferred stairs, the ramps made him dizzy on the way down). But over the course of the next year, we went out less and less, going mainly to physiotherapy sessions, Dancing With Parkinson's, to the homes of friends, or to see our children and grandchildren. Getting in and out of the house was hard. Getting in and out of the car was hard. We had a transfer wheelchair for when he was in real trouble which he loathed. He far preferred to struggle with that walker, which could turn into a mini wheelchair if need be. We were beginning to get a sense of what "worse" meant. Walking had become much more difficult quite quickly though we had been told that Parkinson's is a slow-moving disaster. His symptoms seemed to get worse month by month. We phoned the neurologist to ask what to do when the freezing moments became so severe and the unsteadiness so profound that standing became a problem. Take another Sinemet, it's fine, we were told. The daily load went to four a day, with a fifth taken if needed, and often we timed it to twenty minutes before a physiotherapy session on the theory it could help him move well enough to get value from it.
My guy had no appointments with the neurologist until the end of the summer of 2017. He was unsteady enough, and overheating was such a concern, that when I brought out a new book that June he stayed home. It would have been too warm for him in the pub where the launch was held. All the while we waited to hear from one of the movement disorder clinics that they finally had a spot for him. We waited in vain.
We continued to plow through the literature online, especially theories on causation. We found papers by an Italian neurologist who believes that Parkinsonian symptoms are caused by the inability of afflicted patients to absorb thiamine, a B vitamin, through the gut. Thiamine is vital for many neurological functions. The neurologist had published papers on the experiments he'd done on his own patients. He gave them mega-doses of thiamine by injection and saw very significant abatement of symptoms. He insisted that careful history-taking had shown him that most of his patients had experienced gut issues long before their movement problems appeared.
My guy had experienced gut issues before his movement problems appeared. There was something like hope in this!
I read the papers with excitement--though I had a niggling concern that the Italian neurologist had used no controls in his experiments, so his work was anecdotal which meant it could be right, but it could also be dead wrong. Look on the bright side, I said to myself. Can't hurt to try the thiamine.
I wrote to the neurologist: I asked him how much thiamine we needed to get into my guy's bloodstream to affect his symptoms. He told us we needed 1200 milligrams per week. I realized that it would be a hard struggle to get to our doctor's office weekly for injections, so I decided to look for an alternative delivery system. And I found it. Mosquitoes hate the smell of thiamine so it is now available in patch form to ward off mosquitoes as a green alternative to DEET. I could find no one in Canada making thiamine patches but we found a Colorado-based company selling them on Amazon and ordered a few direct from the company.
It seemed to work. He improved.
The Dancing With Parkinson's sessions were held in a large auditorium but the building was old. No air conditioning. As the summer days warmed up, my guy was less and less able to participate. I would do errands while he was dancing, only to come back to find him collapsed in a chair, unable to continue. He was overheating. One day he was so wobbly I had to push him from the building on his walker because he could neither stand nor walk. We stopped going.
Though we used the patch carefully, his symptoms became worse. He also had an allergic reaction to the patch glue.
I wrote to the Italian neurologist to ask if we should up the dose. I explained that his symptoms seemed to be getting worse rather quickly.
It might be Multiple System Atrophy, he wrote back, and for that you need a much larger dose of thiamine, about ten times larger.
And then he stopped writing back.
What's Multiple System Atrophy? I wondered.
We went to see the family doctor for a regular appointment. We need to get moving on referrals, we said. It's been 18 months since the diagnosis and we still haven't heard a thing. And what's Multiple System Atrophy? She explained it's exactly what it sounded like, many systems failing all at once. She offered to have the senior physician on her staff write to my guy's neurologist asking him to do the referrals on an urgent basis. She offered to try and find us another neurologist, in particular she would try to get a friend of hers with a position in another hospital to take over his care. She also said she would speak with our less than helpful neurologist herself and offer to provide him with research about interesting clinical trials that might be appropriate.
Fine, we said.
But it was not fine.
In fact, it did not end well at all.
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