This work is copyrighted by my business name, The Harfolk Press. Apart from one copy for personal use, please do not make copies. There are just two more chapters until the book is finished. At that time, December 6, 1999, I would appreciate any commments or criticism any of my fellow PWPs might like to offer. MY SECOND LIFE Chapter 9 A SPECIAL KIND OF SUPPORT I was euphoric during the first few weeks after the operation, but I gradually realized that only the right side of my body had been effected. This was to be expected since it was the left side of my brain that had been treated. The right side of my body, particularly my leg, was still very much subject to my medications going "off", sometimes in the most unpredictable ways. In spite of this daily handicap, I wanted to enjoy the freedom the operation had given me and I didn't mind taking risks doing it. There were times, glorious times, through the winter and spring of 1994, when my meds were working as they should. I went cross-country skiing for the first time in several years. For my first ski excursion we went to a fairly remote area. If my meds had gone off unexpectedly I would have been stuck there and we would have had real difficulty getting me back to the car, and if they had gone off as I was running downhill I could have hurt myself badly. But these were a chances I was prepared to take. The following summer, I played tennis for the first time in five years, wearing out one of Esther's nieces and her husband with my enthusiasm, if not my skill. Again, if my meds had gone off when I was in mid-run for a ball I could have had a bad accident, but it didn't happen. That same summer I delivered two sermons at our church, Christ Church, Deer Park. Perhaps, for some people, this brought to mind Samuel Johnson's no longer politically correct comment concluding "...It is not done well, but you are surprised to find it done at all." I was surprised that I could do it, but delighted as well. In the months following my operation I began taking an increasingly active part in the Parkinson's Foundation. When I had first been diagnosed with Parkinson's back in 1982, I had responded to the condition with denial and fatalism, and had avoided the Foundation with its do-gooding reputation. Esther had taken a more positive approach, become involved, and used the excellent information service to educate herself about Parkinson's, and she had supported the Foundation in some of its fund-raising activities. The Parkinson Foundation of Canada is the principal organization in Canada representing the interests of people with Parkinson's. Together with affiliated organizations in British Columbia, Alberta and the National Capital Region, it is a national network. The Foundation's head office is in Toronto. There are regional offices in St. John's for Newfoundland and Labrador, Halifax for the maritime Provinces, Montreal for Quebec, Toronto for Central Ontario and London for Southwestern Ontario which serve the requirements of the local chapters. The Central Ontario Region is the administrative arm of the Foundation serving the Toronto Chapter, the largest and most active in the Foundation. Under the leadership of an executive director, staff services are provided to the chapters and support groups. My own first connection with the Foundation had ended in disappointment - the cookbook I had written in 1988, which I believed could be a useful fund-raiser for the Foundation, had been declined - and, in effect, I went away mad. I stayed away until the winter of 1991-92 when Esther worked on a fund raising event. I helped her, and began to see the value, even the fun, of it. The Toronto chapter of the foundation had a newsletter. I thought that with my experience writing for Seven Days magazine I had something to offer, and in the spring of 1992 I joined the executive committee of the Toronto chapter and became editor of the newsletter. That I knew little about the Chapter and less about the Foundation did not deter me; it probably made me keener! I didn't just edit the newsletter. I had changed its name, wrote most of the articles, and what I didn't write, rewrote. I was sure my style and presentation was better than anyone else's. I edited the newsletter as though I was running my own Time magazine. The chapter president and the former editor checked my first issue for accuracy, but they did not realise the extent of my editorial activities. When the newsletter appeared, I felt pleased with my efforts, but it produced a major crisis. I had failed to grasp that the newsletter was a cooperative effort, and that, like other aspects of volunteer work for the Foundation, the hard work of other volunteers had to be acknowledged and respected. The Executive Director of the Foundation called me into her office and gave me a terrible dressing down. It was so devastating that I shook for the rest of the day, a Parkinsonian reaction to stress. What she said was correct, but she was ruthless. Subsequently, there was a special meeting of the Chapter Executive at which an editorial committee was struck to review each issue prior to publication. That constraint was more than my pride would allow and I decided to resign. It was probably just as well, for I had more than enough to think about. Esther had just been diagnosed with Multiple Sclerosis, I wanted to complete my biography of Howard Clark and the major renovation of our house was about to begin. Joan Prior, the new Chapter President, accepted my resignation and graciously said that I would be welcome back on the Executive any time. We had undertaken the renovation of our house so that Esther, with MS, and I, with Parkinson's, could continue to live there comfortably and safely. In April, 1993, when the renovation was nearly finished, Esther and I and John Vanstone, our architect, gave a presentation of the renovation at a meeting of the Toronto Chapter of the Parkinson's Foundation. I was making the presentation, but about two sentences in, my speech became slurred and indistinct, so I turned the program over to Esther and John. Much to my surprise, I felt no embarrassment or humiliation; it was just part of having Parkinson's. Despite my poor performance, the evening had gone well, and I felt good about it. The exciting part of it all was the warmth and open way I was accepted by everyone connected with the chapter - from the newest member to the founding members who were still active. It took me a while to realize that I was among peers, and that my dyskinesia did not frighten them. Their unquestioning acceptance of me was a kind of peer support I had been missing because of my denial and arrogance. I also realised that I had been fortunate in a way that many Parkinsonians were not. My friends had been my personal support group. I hadn't gone to them and said, "will you help me cope with Parkinson's by being my support group?" They had just done it: Stephen Booth, Ian Hamilton, Howard Shill, Tony Graham and a number of others. It was through the foundation, I began to realize that there are many Parkinsonians who do not have a supportive family or group of friends to help them through the rough periods. That spring and summer of 1993, when Parkinson's seemed to be accelerating through my body, I was almost manic in my need for activity and accomplishment. Esther, as part of her work with the Board of Education, had been involved in a working group on inner city children and their behaviour problems. One thing that fascinated me was the health problems that seem to be endemic there. The data were irrefutable, and led me to try to square my traditional conservative political views with the obvious need for social assistance and social justice. I was very much influenced by Gertrude Himmelfarb's book Poverty and Compassion: the moral imagination of the late Victorians. She describes how the Victorians transformed their passion for religion into compassion for humanity. But most people in nineteenth century Britain and North America shared the common ideology of Christianity. This is no longer the case in la te twentieth century Canada. I wanted to find a system of nationally shared values that might, on the surface, be similar to what we call our Judaeo-Christian heritage, but, it would differ in the richness of nuance and subtlety that comes from its being forged in the crucible of national debate. It would surely affirm the dignity of human life and the concept of humanity being a product of God's imagination. I recognized that such a concept already existed in Toronto, with programmes such as "Out of the Cold," in which seven churches (one for each day of the week) provided a hot dinner, bed and breakfast for the homeless on an ideology-free basis. The philosophical problem I saw was that as long as these services are provided without thought of compensation by the state, the institutions providing them earn the right to speak for those they serve; if they seek compensation, they will be simply another contractor in the social assistance system. In addition, I began to understand that the group served can only be represented by the sponsoring institutions in the short term. As the group served becomes cohesive, its members need to learn the art of self-advocacy. This process may be painful for the originating sponsors as they may find themselves attacked or see points of view espoused which seem contrary to the originating values. During the summer, the more I thought about it, the more I became concerned about this issue. I talked about it at length at Blue Sea with Tony Graham, and back in Toronto with Stephen Booth and Tony Lang. I wrote a paper which I wanted to present to the Toronto Chapter of The Parkinson Foundation. I showed Joan Prior a draft. Although my proposal was clearly not part of her agenda, she recognized it as a legitimate viewpoint and invited me to present it at the September meeting of the Chapter. She also invited me again to rejoin the executive of the Toronto Chapter. The paper, titled Does Toronto Have a Soul?: a challenge to the Toronto chapter of the Parkinson foundation of Canada, argued that, despite Canada's universal health insurance, there were a lot of people with undiagnosed Parkinson's and other chronic diseases living in Toronto's Inner City as a result of society's sin of omission: not providing sufficient health care resources to deliver the same standard of care to the homeless and indigent as is available to rest of society. Society, I argued, had - and has - a positive obligation to remedy this failure. The task was daunting: to do it properly would involve a colossal unified effort of business, labour, the city, the provincial and federal governments to eliminate the factors leading to poor health in the inner city. But that was not a reason not to make a start. The proposal was well-received when I presented it at the September meeting. However, I soon realized that I could not expect the Chapter to drop everything and re-orient itself to my agenda. As Matthew Arnold said, "it is not a having and getting, but a growing and becoming." At that same meeting, Joan asked for volunteers for the position of Vice-President, with the plan being to succeed her in six months time. After thinking about it for a few weeks, I called Joan and asked her if she would accept me in that position. She responded positively and through October and November I began to immerse myself in the Chapter's affairs. I soon found that I had a good deal to learn - from the exercise groups and Taoist Tai Chi classes to the various support groups coordinated by the Chapter as well as the all-important question of fund-raising. During this time I was also winding up for my pallidotomy operation which took place in December. Because the operation was so successful and I recovered from it so quickly, I was able to maintain my momentum in the chapter activities. One day, a few weeks after the operation, I was at the hospital for a routine follow-up appointment when Jan Duff asked me if I would see a patient who was going to have a pallidotomy the next day. It was Peter Kingston, a former president of the Toronto Chapter of the Parkinson's Foundation. He was quite apprehensive about the operation, and we talked for about an hour. I told him about my experience and about the anxieties I had had. When I left, he was looking forward to the operation. I stopped in on Peter the day after his operation. The change was so great in him and was so positive that I was moved to tears. I began to see other prospective patients and these visits developed into one of the Central Ontario Regions's initiatives, the Peer Support Programme, in which Parkinsonian's, particularly those of us who have had surgical or other special treatment provide advice and encouragement to others. I have now seen or spoken to over a hundred Parkinson's patients who were considering surgery to alleviate their symptoms and it gives me great satisfaction. Of course the conversation varies with every patient, but centres on the Parkinsonian experience, what it has meant to the patient and to me. Typical questions are: is the operation painful? how does it feel emotionally when the lesions are made? what is my confidence level with the surgeons? how long does it take? Is all the neuropsychological testing necessary? how much improvement should be expected?. In discussing these subjects I have had to be careful that I offer no medical opinion and am not critical of any doctors. And, of course, what the operation has done for me. I have to be candid and say that there are no guarantees; these procedures do not come with an owner's manual. I always stress that my results, which are the best the surgical team have achieved to date, may not be replicated. Most of the operations are successful and I am almost always emotional when I see the pleasure and excitement of the patient. I have become almost a fixture at the hospital, so much so that occasionally I have taken certain liberties. Dr. Andres Lozano said to me recently, his tongue only half in his cheek: "Bill, this is a hospital. As a general rule, the doctors make rounds on the patients, not the other way round. I fully expect to hear on the public address system an announcement that "Mr. Harshaw will be conducting pallidotomy rounds at 2 pm." After my December, 1993 operation, I became even more active in the chapter and foundation. I became president of the Toronto Chapter at its Annual Meeting in April, 1994 and in September I was nominated to the Board of the Foundation. I gradually saw that the kind of support the Chapter and the Foundation was giving me was unique as is the support it gives everyone. For me, it was unquestioning acceptance of me as a person with Parkinson's and the willingness to listen and consider my ideas. That might not sound like a great deal of support, but it was vital to me. Back in the days when I worked at Molson's, I had enjoyed a high level of responsibility. I had been unable to replicate this when I worked at the Bank. Intellectually, I could accept that this was an inevitable consequence of my Parkinson's, but it still bothered me. Now, at the Foundation, I felt back on track. I was involved in a cause I felt committed to and where my business experience could be put to work. Initially, Esther had to restrain me. I was out to recreate the world in six days, and never mind resting on the seventh day. As I reined myself in, I reached back to Molson days and remembered some of the lessons I had learned there from mentors like Jim Black and Drew McCaughey such as the importance of sharing the credit and taking the blame. And vision. It is essential to have a clear idea of the goals and objectives you want an organization to strive for. Initially I did not know what my vision for the Foundation was. As it evolved, it was simple. I wanted the Chapter, and then the Foundation, to develop into more accountable bodies, working for the stakeholders, above all for Parkinsonians, and answerable to them. Until this time the Foundation and the chapter had been in the first stage of a service and advocacy body - the governance was almost entirely in the hands of the Executive which was essentially self-appointing. I believed the time had come to extend the governance to the membership at large by expanding the nomination committee and inviting nominations from the membership, and having the directors properly elected by the members. Likewise, by moving the Annual General Meeting until later in the year, when the Chapter's annual financial statements were ready, these could be properly approved by the membership. It was also time recognize the professional nature of the Toronto staff and to formalize and write job descriptions of the various positions. I came to realize that the volunteers are the most important people in the Foundation. Staff co-ordinate and provide administrative services, but without volunteers, there is no Foundation. They never let us forget that we exist to serve Parkinsonians and their community. The volunteers are the grass roots we dare not lose touch with. I soon discovered all my waking hours could be spent on Chapter business. I had to resist this. There were some events that I had to attend, but there were not that many of them. Leadership means trusting those in positions of responsibility to do the job. Despite my enthusiasm, I realised that I should not to appear at all the committee meetings or I would give the impression that I had little confidence in the committee chair. And, I recognised, I am not a good detail person, and often the committees spend a lot of time on details, as they must. In the next years we made some strong advances in fund raising, in particular with our annual tulip sale and in the Superwalk for Parkinson's. Charity walks had become a bit commonplace and we had to find ways to set this one apart. In 1993 the walk raised only $14,000. As chapter president I had to support the event and by using all my contacts was able to raise $3000 out of a total of $20,000. But one person should not be raising 15% of the revenue. The 1995 Walk had a number of new features: a new logo and theme slogan "We walk to help those who have difficulty walking", international participation and a tripling of gross funds raised to over $60,000. I sent out 69 letters and raised $4,300. The difference was that in 1995, I was in fourth place in sponsorship pledges. For the 1996 SuperWalk, the Toronto project that had started small had grown to 23 cities in Canada, New York City, and several European countries. As well, The Foundation has secured Major General Lewis MacKenzie as National Honourary Chairman and the Honourable David Crombie as Honourary Toronto Chairman. The volunteer team has done a superb job in growing SuperWalk from being a local event to being a major, international fundraising event. The continuing challenge for all the chapters of the Foundation is to reach all those Parkinsonians and their families who could benefit from the support of the Foundation. At present the Toronto Chapter has about 500 members, just over 6% of the estimated number of Parkinsonians in the Greater Toronto Area. This is slightly below the national average 9%. I worry about whether we can be an effective advocate with such a low share of market. We have to become more effective in marketing the advantages of membership to Parkinsonians and their caregivers. It is sad and sometimes tragic that such a large proportion of people with Parkinson's suffer in silence and loneliness. One of our 1994 initiatives was spectacularly successful and extended well beyond Parkinson's. The cost of medications is a major social problem that, ironically, becomes more serious with each major discovery by the pharmaceutical industry. As the technology for discovery becomes more expensive, so do the drugs. Consequently, without a good drug insurance programme or government assistance programme, the financial implications of chronic illnesses to individuals and families can be catastrophic. In Ontario at this time, the Drug Benefit Plan, one of the cornerstones of the Provincial Health Plan, was essentially a list, known as the Formulary, of drugs which could be provided free of charge to Seniors and to people on Social Assistance. Although the Ontario Drug Benefit Plan, as it existed, did provide coverage for a wide range of medicines, it did not provide secure coverage for people who had chronic diseases, and it gave no help to people of limited means. Poorer families were having to go on social assistance in order to be funded for the necessary medications for long-term diseases and medical conditions - everything from AIDS to renal failure. And they were losing their dignity in the process. The inequity was tremendous, because the cost of drug therapy varied so much for different conditions. For some medical conditions, the cost of regular drugs was crippling even for people in the highest tax bracket. For Parkinsonian's, the important medications are controlled release (CR) and sustained release (SR) drugs some of which were on the Formulary. One of them, Sinemet CR (which I used) was not on the Formulary as it was a fairly new adaption of an existing drug. Seniors and those on welfare could get Sinement CR for free, but only after having obtained special permission from the Ministry of Health. This was routinely granted, but only after a lengthy and frustrating process. At a meeting of the Foundation Board, we heard that the Ministry of Health was now considering removing Controlled Release and Sustained Release medications altogether. Some had already been taken off the list on the grounds that they were inefficacious. Frank Roth, the bubbling, witty entertainment lawyer who was President of the Foundation, had read my Does Toronto Have a Soul speech. He came to me and in his comical, mock Man From Uncle voice said "Your assignment, should you accept is to devise a drug plan which will cover all Parkinsonians." I accepted with alacrity and with no realisation of what a huge task it was. In approaching the problem, we had to recognize that, with the province's huge financial deficit, the Minister of Health had the unenviable task of having to bake a smaller pie and then carve it up amongst the ministry's many supplicant.s For the first time the health budget was being reduced. It was also obvious that the problem of drug costs was not just limited to Parkinsonians. Our goal was to devise a practical proposal for a drug plan for chronic illnesses which we could put to the government. It was ambitious, but the need was great. We had to do more than bewail the problem. We knew that it was unrealistic as well as perhaps undesirable to demand free access to all drugs on demand. We were looking for a formula that combined private co-payment with government funding. We involved the Toronto Chapter's very capable Executive Director Maggie Wheelock and the whole Executive Committee. Most importantly, in order to make sure we stayed on the rails and came up with a practical proposal we could put to the government, we established a review committee was formed made up of tax, medical, and health care experts. It included Dr. Anthony Graham, Chief of Cardiology, The Wellesley Hospital; Dr. Anthony Lang, Director, Movement Disorders, The Toronto Hospital; Robert Lindsay, Senior Tax Partner, Osler Hoskin Harcourt; Thomas McDonnell, Executive Director, The Canadian Tax Foundation; and Trevor Williams, then the Chief Executive Officer, The Parkinson Foundaton of Canada. The key member of the committee was Michael Decter, former Deputy Minister of Health for Ontario. The Review Committee was essential in ensuring the practicality of our proposal: many of its suggestions were incorporated in the final document. We had to face an important issue at a meeting of the Review Committee in September. The AIDS Committee of Toronto was the only other group which had seriously addressed the issue of long-term drug costs. We had invited representatives of the AIDS Committee to join although we knew that they were philosophically opposed to the notion of co-payment. The AIDS representatives were of the view that everyone has as of right access to needed medications free of charge. We clashed at the meeting, but it was a polite disagreement. The challenge was to devise a plan that is universal, i.e. available as a right to all residents of Ontario, while at the same time being progressive, i.e. the private co-payment would increase relative to the individual's income. After many drafts we arrived at a plan that satisfied the Review Committee. Here is a simplified example of the proposal: Net Income, family of 3: $20,000 $40,000 $60,000 Annual prescription cost: $5000 $5000 $5000 Prescription cost as % of income: 25% 12.5% 8.3% Proposed co-payment: $350 $1,239 $2,139 Co-payment as % of income: 1.8% 3.1% 3.6% We decided to present it at the Annual Meeting of The Foundation in Montreal in September, 1994. I made the presentation with the title "Restoring Dignity". After I finished, I was walked back to my seat and wondered why people were standing up. Frank Roth, the President, said "Bill, they are giving you a standing ovation. This has never happened before." Why the standing ovation? Our presentation gave Parkinsonians hope, hope that the Foundation was looking out for their interests. I then moved, seconded by David Black, a past president, that my speech become Foundation policy. A day later, through Michael Decter's good offices, I was invited to participate in a consultation meeting to consider our proposal which was sponsored by the National Pharmaceutical Strategy Directorate of Health Canada. It was a great success, but we were not optimistic about its chances of being adopted by the Ontario government in the near term. To the astonishment of most of us, only a couple of months later, on December 1, 1994, the Premier of Ontario, Bob Rae, announced the government's Trillium Drug Plan, which was modelled in all important respects on "Restoring Dignity." At a press conference in Toronto, the Minister of Health, Ruth Grier, announced the plan in detail, including the size of the co-payment. I was invited to make a statement at a the conference. After the questions were over, Mrs. Grier publicly thanked me for the impact I had on the plan's design, and joked, "it's not very often that a lifelong Tory like you is the author of an NDP program." The Trillium Drug Programme as introduced by Premier Rae's NDP government still had a problem in that the deductible structure or the co-payment provisions, were not progressive enough. The break points at which the level of co-payment changed were only three and kicked in at lower rather than higher incomes. We urged the new Conservative government of Mike Harris to make the plan more equitable so that the primary beneficiaries will be those with low incomes by using break points which would result in lower co-payments for low income levels and higher co-payments for those with higher incomes. These recommendations were accepted by the Government. Our experience with the Trillium Drug Plan really began the Chapter and Foundation leadership in advocacy matters on issues that concern all Parkinsonians. The process taught us a valuable lesson. In dealing with government, the approach should not be prescriptive, telling the government in no uncertain terms what to do. You are more likely to get a favourable hearing and to be successful if your proposal is descriptive of the problem, offering alternative solutions, allowing the government to take its own initiative. For me, the experience of working on the Trillium plan and other Foundation activities has been a tremendous opportunity. I have become virtually a professional Parkinsonian, putting my experience of my years with Parkinson's in combination with my business skills. My goal in this work is to make the Parkinsonian experience easier for those who will come after. It has been part of the process of learning and of intellectual and spiritual freedom that I have called my adventure with Parkinson's. 4855 words