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Copyright ©1999 The Harfolk Press This work is copyrighted by my business name, The Harfolk Press. Conseqently, I must insist that you do not make any copies, except one for your own private use. If for any reason you want more thanone copy, send me an E-mail with the details and I will give your request prompt and serious consideration My Second Life Chapter Two - Part One LEARNING THE WORST It was a cold, blustery day in February, 1982. I found Dr. Macdonald's office in a wing of the Wellesley Hospital. It was a dismal building, a converted nurses' residence, dating from the 1940s. As I walked along the hallways I could see that some of the doctors had made the best of a bad thing by imaginatively decorating their offices, waiting and consultation rooms. Not Macdonald. Battleship linoleum on the on the floors and a depressing beige/taupe paint on the walls, unrelieved by any print at all formed the daunting decor. Dr. Macdonald was an unremarkable man physically with an easy if impersonal manner. It took me a while to grasp that his very ordinary appearance concealed a very sharp mind, quick to pick up nuances and subtleties, and with a keenness for high technology. By way of introduction he said, "You know, Bill, diagnosing neurological conditions is particularly difficult. It has to be done by inference because the brain can not be examined directly. A brain biopsy - a small sample - can not be taken and examined like other organs. For example, your tremor could be Parkinson's, Multiple Sclerosis, Essential Tremor or Progressive Supra Nuclear Palsy - that last one's a killer. There are a few other neurological diseases that could also be a possibility, but they are so rare that it would be like looking for zebras rather than horses." He took my history and asked, "Anyone in your family ever have any neurological conditions?" Not knowing what they were, I asked, "Like what? One of my father's sisters had 'nerves'. Is that what you mean? They would never say what it was except 'nerves.'" "That's an old-fashioned expression! Was she crazy?" "Yes, very much so! She spent most of her life in a mental hospital." "Bill, she was probably mentally ill, likely schizophrenic. I meant Multiple Sclerosis, that sort of thing." I sort of vaguely knew. Esther's aunt, her mother's twin sister, after whom she'd been named, had Multiple Sclerosis for many years before she died. She had evidently been a wonderful, fun-loving woman whose husband's early death from a heart attack had turned her bitter. She had contracted MS later in life, and had great difficulty walking. Dr. Macdonald then proceeded to the diagnosis. Methodically, but without telling me what he was looking for, he put me through a number of tests: opening and closing my fist, tapping thumb and index finger quickly, tapping toes and heels, walking, heel and toe, balancing on one foot, pinprick, to test me for feeling, plus others I cannot remember. Many of them were the same tests Dr. Jarda Polak had done a few weeks earlier. When it was all over, he said in an emotionless voice, "Well, what did Jarda tell you he thought it was? He's usually pretty good at this." "He didn't say" "That's unlike him. You have Parkinson's disease, Bill. So far its only on your right side." I felt as though I had been punched in the groin, and then I became nauseous. I thought I was going to lose control of my bladder and bowels for a few seconds, but I did not. I must have turned white as a sheet; I know I broke out in a sweat, because Macdonald handed me a damp towel before he continued, "Funny thing, Parkinson's. Don't know what causes it, don't have a cure for it either. And it doesn't progress at the same rate in everyone. So, in ten years time, you might be the same as now or two years from now you might be a quivering bowl of jelly." Dr. Ronald Macdonald, the Chief of Neurology at the Wellesley Hospital in Toronto had no hesitation in his voice, neither was there a hint of equivocation. He was like a judge delivering a verdict from which there is no appeal. "Are there any tasks that you are finding either more difficult or impossible to perform?" I said, "Just one thing. Tying flies for fly fishing and tying the fly onto the leader." "We'll have you back to normal, tying those things on in no time," he said cheerily. "Parkinson's is very idiosyncratic in the way it strikes individuals. Some people have great problems tying shoe laces while others will have no trouble at all. Bring samples of your handwriting over the past two or three years to your next appointment. I want you to have a CAT-scan before you see me as well. It's new technology. It allows us to have a detailed look at the sections of your brain that Parkinson's has affected. Much better than X-rays! It will be absolute confirmation that you have it." I decided to walk part way of the way home. I noticed my right eye was tearing involuntarily. What did Macdonald mean when he said it was on my right side only? Soon there were full-blown tears from both eyes. I must be a fine sight, I thought, looking like the derelicts that live and hang out around here. I walked from the Wellesley Hospital a few blocks to the Yonge-Bloor subway stop, wondering what I would tell Esther. Apart from the "bowl of jelly" comment, Macdonald hadn't told me what to expect from Parkinson's. Anyhow, the symptoms weren't that serious now. You had to be pretty observant to notice them. Or so I thought. I remembered Granny Gwyn, my maternal grandmother, who had died in 1968. She had Parkinson's we were told. All she had was the tremor, and not all that badly. Then there was John Diefenbaker, the former Prime Minister of Canada, whose head shook and he had the tremor as well. That frightened me because I remembered the 1967 Tory party leadership convention and how paranoid Diefenbaker had seemed to me in that year. Esther was just waking up from an afternoon nap when I got home from the hospital. She asked, "What did the doctor say was wrong with you?" "Parkinson's Disease, on my right side only," I said, trying to minimize the bad news. Esther started sobbing. "What does this mean will happen to you? How does it get worse? What is the outlook?" Not only had Macdonald not been very forthcoming in laying out the implications of Parkinson's in both the short and long term, I had not been very inquisitive in asking about them. We decided to do nothing until we saw Macdonald together. We had an appointment in about two weeks time. In the meantime, I had a CAT-scan. It was a huge machine in the basement of the Wellesley Hospital. It took about half an hour to set up and "take the pictures". Part of me was still rejecting Macdonald's diagnosis. Surely there was some mistake. I was desperate for any glimmer of hope. A taciturn technician would only say, "Your doctor will tell you the results." Esther had begun reading about Parkinson's and she and I went together to the next appointment with Dr. Macdonald. He wanted to ascertain the "progression of my Parkinson's and we wanted to gain information. Talk about a man happy in his job. Macdonald's enthusiasm and obvious pleasure in demonstrating his skill in making correct diagnoses of medical conditions that don't get better seemed out of place. It is one thing to enjoy your work; it's quite another to seem to take pleasure from giving bad news. "Good thing you had the CAT-scan. No doubt about it now! Also your handwriting. You can see the deterioration over three years. That's confirmation too! It's very unusual for someone so young to get Parkinson's. You're the youngest patient I've had with it. I would guess that there aren't fifteen people under forty with Parkinson's in Ontario. We know approximately how quickly it will progress in a typical patient, one who's over sixty when diagnosed, but I have no experience with young onset. The worst cases wind up being immobilized because their arms and legs go rigid. But not everyone is a worst case. It is a very individual disease. Sorry I can't be more help." If he knows that it's Parkinson's, perhaps he can do something about it, I thought. "Are there any drugs I can take? What can I do about it?" "Nothing for the time being, Bill. All I have established is that you have Parkinson's. This examination has given me your "baseline", against which I'll be able to measure your progress. Its a chronic progressive disease. What you would normally call "getting worse", we call "progress". Anyhow, I won't be prescribing any drugs until I can get an idea of the rate it's moving. It's not bad enough for drugs yet." "That wasn't much help," I grumbled as we left. "Now, Bill he seems like a good man. They just don't know that much about Parkinson's", said Esther. All we knew about Parkinson's was what Dr. Macdonald had told me and what Esther had read. It is a chronic degenerative disease of the brain. I got in touch with my closest medical friend, Tony Graham. His advice was to read up on the condition. The advice was good but the result depressing. The books and pamphlets all seemed to stress the worst that could happen: the patient physically immobilized with the face an impassive mask, or minimally active, dependant on a friend or relative for day-to-day living. I quickly decided to avoid reading about Parkinson's. Esther hid the most depressing book from me. To this day I have not seen it. I was determined that I would never become like that. And the easiest way was to deny that I even had Parkinson's. Esther read everything she could get her hands on. She would say to me after reading a book or article about Parkinson's, "Bill, this is fascinating. They're really making progress in finding out how the drugs get to the part of the brain where they can do the most good. That means that your drug dose can be lower because it won't be wasted." "Big deal", I would huffily reply. "He won't even put me on any drugs yet. It's a waste of time." I did read the classic description of Parkinson's. In 1817, twenty years before Queen Victoria ascended the British Throne, Dr. James Parkinson, a London physician and social activist, wrote his "Essay on the Shaking Palsy" which described six patients with a slowly progressive physical disease. All of them had the following characteristics: involuntary tremulous motion, with lessened muscular power, in parts not in action even when supported, with a propensity to bend the trunk forward and to pass from walking to a running stance. It is an elegant piece of English prose: this description of Parkinson's disease has not been improved upon in the eighteen decades that have passed. And it was all I wanted to know. But inevitably I learned more. I learned that the cause of Parkinson's has not been discovered, neither has a cure been found. Dr. Parkinson, in his essay, also noted that after a stroke, the characteristic tremor was less evident, although muscle weakness more than made up for the eased tremor. None of the medications or surgical procedures that have been developed over the years have cured the disease. Instead, they have purchased some of that elusive commodity called time and have allowed the patients to live more comfortably than they otherwise would have done. The condition progressively worsens, with the worst advanced patients eventually immobilized. Parkinson's Disease results from the death of nerve cells at the base of the brain called the substantia nigra, literally "black substance." These cells produce a key brain chemical, dopamine, a neurotransmitter which brain cells use to communicate with each other. Without dopamine, the thought of lifting an arm can't be transferred into the act of lifting an arm. As the cells die, the production of dopamine slows down and the motor system begins to shut down. By the time a patient is diagnosed 80% of the substantia nigra cells are dead. But it has not been discovered why the substantia nigra cells die: do they die fighting off Parkinson's, or as a result of Parkinson's? I tried to persuade myself that if no one knew I had Parkinson's, then I didn't have it. I wanted to deny to myself and to the world-at-large that I had Parkinson's. Friends and acquaintances, with a few exceptions, weren't told by me, but by Esther. I didn't want to talk about it, but I was in the awkward position of not knowing who knew and who didn't. Early on, we told Esther's parents. Mrs. Clark's advice was not to tell anyone, particularly the Bank where I worked. Her reasoning was that you don't tell the world about imperfections in your family. We decided, for the time being, to say nothing to the children about Parkinson's. At the same time I was trying to deny having Parkison's, I was very self-conscious of my appearance. By this time, anyone observing me closely would know something was wrong. There was the tremor in my arms, suggestive of the "morning-after shakes", the DTs that the comedian Shelley Berman so graphically described in his monologue "The Morning After the Night Before." There was also the dragging of my right foot, which I passed off as shin splints or tendonitis from running. I also realise now that Parkinson's, or the side effects of medications was beginning to have an effect on my judgement. Concentration was not a problem but my ability to order priorities was effected. Fly fishing is the one sport I love. It is unlike any other form of fishing. Delicacy, grace are its hallmarks. These qualities are precisely the ones that Parkinson's strikes. I was determined that I would not stop fishing. Stephen Booth was one of the very first people that I told about my diagnosis. He is my fly-fishing mentor and now helped me tie my flies to the leader - a task that called for more dexterity than I could manage. I cursed Macdonald for the breezy assurance he had given me in my first appointment that I would be back to normal. I had never been able to cast with the elegance of a really good fisherman like Stephen, so any deterioration here was probably marginal. It was my first conscious experience of making a trade off: accept a little help in order to do something you really enjoy. The price was a marginal loss of independence. It was well worth it.