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Copyright 1999, The Harfolk Press MY SECOND LIFE Chapter 10 part 1 of 3 DOING THE OTHER SIDE The announcement of the Trillium Drug Plan at the beginning of December, 1994, was a tremendous victory for people in Ontario with chronic diseases and it was an important step forward for the Parkinson's Foundation and for the Toronto chapter. It was also important for me in a personal way because it validated the work I had done on the project and gave me a new level of confidence. At this time I needed to feel as positive and enthusiastic as possible because I was, just ten days after the Trillium announcement, going to have second operation on my brain, one that was going to be a medical first for the neurosurgical team and which would need all the reserves of confidence and stamina I could muster. The pallidotomy I had had a year before had been wonderfully successful as far as it went and I had the experience and exhilaration of enjoying again activities like walking, fly fishing, skiing, going shopping and the normal activities of daily life, as well as a much greater ease in social life and communication. But the operation had only effected one side of my body and, in the months after my operation, Parkinson's did not stand still. As a result, there was a paradox in my condition. While I retained the benefits of the operation on my left side, movement rigidity was an increasing problem on my right side. Despite the fact that I could sometimes ski and play tennis, I also could not walk unaided for as much as five hours a day, when my meds were off. I found an account by Oliver Sacks, talking about another situation, that described my feelings well: The leg was in exile ... or it was not where it should be. Normally we are so at home in our bodies and we so own them that things like this are unimaginable. Despite the satisfaction from the work I was doing with the Parkinson Foundation and the pleasure of being more active again, the restrictions Parkinson's made on me were sometimes overwhelmingly oppressive. One day in November I went to see a friend, John Fraser, a well known journalist and Toronto personality who had an office at Massey College at the University of Toronto. After checking in at the Porter's Lodge, I started to cross the quadrangle to John's staircase. Only I didn't. After a few steps, I froze. My meds went off. My normal stride of eighty centimetres had shrunk to little more than one centimetre. I was crawling on my feet. Christ, it was going to take forever to get there, only about a hundred metres. People noticed me - it was hard not to. Luckily I had my cane with me so I didn't go tumbling to the ground. Thank God! A few asked if they could help. Stupidly, I said, "Oh, no I'm alright. Its just my Parkinson's acting up." John saw me from his window and came rushing to my side. "Bill, this is terrible. I had no idea Parkinson's affected you so much. How can I help? We'll go to the Common Room, its not as far as my rooms." With John's support we made halting progress until we reached the stairs. These I could manage and I bounded up with alacrity, only to resume my snail's crawl when we reached the landing. I was beginning to think about writing a book about my experience with Parkinson's and wanted to talk to him about it. As we chatted, John put me totally at ease, and for one of the few times, I recounted my private agony of Parkinson's, how I feared feeling freak-like and unwanted. It was hard, because I didn't want to feel sorry for myself, nor did I want others to feel sorry for me. I was terrified that my Parkinson's would land me in a chronic care hospital utterly immobilized and incapacitated: that's why I increasingly felt like Francis Bacon's screaming pope, disenfranchised and disempowered. John encouraged me to talk about this and eventually said, "Bill, people accept you for what you are not what you have. Only the ignorant and the insecure don't accept your disability. Ignore them." I felt as though I had been to confession, because it was rare for me to unburden my soul. John gave me a copy of his new book Saturday Night Lives and inscribed it "To William Harshaw, with respect". When I left an hour later, my meds were back on and I was refreshed and rejuvenated by John's understanding and compassion. It had been clear soon after the operation that if I was to have the benefit of increased mobility in a dependable way, something would have to be done to my right side. The need to be able to help Esther was the main reason for my having been chosen for surgery in the first place, but I was of little use to her with my right side "going off" without warning. Dr. Lang soon came to the conclusion we should take the next step. In April, 1994, only four months after my operation, he said, "The other side must be done. It's risky, because we will be in uncharted territory, but the risk is outweighed by the benefits." I had many conversations with him over the course of the next eight months, most of them late at night when he had time to talk at length. He went into considerable detail, reporting findings as he heard of them. There were really two alternatives for the surgeons, other than to do nothing: either a second unilateral pallidotomy, which would make it bilateral, or chronic deep brain stimulation, a rather more sensational procedure. No bilateral pallidotomys had been performed in Canada, but there were some data from foreign surgical centres indicating that a bilateral pallidotomy could produce serious complications such as cognitive, speech and gait problems. Hence there was a reluctance to perform this operation. (The Toronto neurosurgeons have subsequently done two bilaterals, one with serious complications.) Chronic deep brain stimulation, the second possibility, produces the same effect as a pallidotomy by a different method. In a pallidotomy, brain cells are lesioned - in fact destroyed - in order to normalize the brain's electrical activity. In chronic deep brain stimulation, two electrodes are implanted in the brain, one in the globus pallidus (GPI) and the other in the sub-thalamic nucleus (STN), part of the basal ganglia. The electrodes are connected to a neurostimulator, which is similar to the cardiac pacemaker which many heart patients use. It produces a constant tiny electrical charge which normalizes electrical activity in the two brain areas where, before, Parkinson's Disease had caused irregular transmissions and receptions. One advantage of chronic deep brain stimulation compared to a pallidotomy is that there is the possibility reversing it - the electrodes could be withdrawn if the stimulation produced an unwanted condition. This was the procedure chosen by the surgeons, Dr. Lozano and his colleagues. I was made very much a part of the decision process because this would be the first time in North America that chronic stimulation would be attempted in the basal ganglia. Less than half-a-dozen cases were on record, performed in Grenoble, France. At the beginning of December, a couple of weeks before the operation was scheduled, I went in for another round of pre-operative neuro-psychological tests. They were the same tests that I had taken the previous year, which I thought might compromise the test outcome. In the event, I did not remember enough from the first round of testing, or from my post-operative assessment to make any difference. The operation was scheduled for Wednesday, December 14. I was admitted to hospital the day before. After I was settled in, Dr. Lozano saw me in his office for about an hour. "I know you have discussed this with Dr. Lang", he began, "but I must be sure that you understand not only the potential benefits but also the risks of deep brain stimulation." He went on to say that, while the final decision would not be made until during the operation when they were in my brain, their thinking was that DBS was the procedure of choice. Apart from the actual procedure being performed, there would be a number of 'firsts' connected with the operation, the most significant of which was the first recording of cell activity in a human sub-thalamic nucleus. Quite apart from being an interesting addition to scientific knowledge, it underscores The Western hospital's approach to research surgery: it must have an empirical basis as well as a theoretical foundation. Inference from laboratory animals and from theory is not good enough. There must be observable evidence. While this is a more conservative approach, it is safer and reduces surgical risk. I knew more about the second operation than the first, about the risks and potential benefits. I tried to ignore the risks, real though they were, and simply put myself in Lozano's and Tasker's hands. I did this because the risks were too horrible to contemplate: cognitive deterioration, balance and gait problems and further speech problems. Simply put, I had a faith in my two neurosurgeons' ability which overrode any potential problems. Much of the operation would be similar to the one I had had a year before. Using the stereotaxic frame and drilling holes into my skull, they would probe into the globus pallidus area of my brain, and record brain cell activity by cross-section, the surgeons working with great precision and to close tolerances. Again, I would be awake and must be alert during the entire procedure. However, this time, there would be more cross-sections of my brain examined and then there would be the insertion of the electrodes; I should expect surgical trauma and edema. There would be extensive testing required after the operation, and again some days or weeks later, before the pacemaker was attached to activate the electrodes. Perhaps the most important difference with the second operation was the simple fact that the surgical team had never performed this procedure before; indeed, it had never been done before in North America and only three or four times in the world. They were going to learn from my experience if chronic deep stimulation worked.