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MY SECOND CHANCE AT LIFE by Bill Harshaw Most of us don't do as well as we could in our first and only chance at life. I certainly didn't. Several errors in judgement resulted in life being less comfortable than it might otherwise have been. Among them was the way I managed, if that word can be used, my Parkinson's Disease. I was diagnosed in 1981; by 1989 I had to retire at the age of 45 on long-term disability. By 1993, I was so incapacitated that I believed life was behind me and that I would shortly be incarcerated in a long-term care facility, cut off from the world and the world cut off from me. Then Dr. Tony Lang, my neurologist, referred me to Drs. Andres Lozano and Ronald Tasker, two neurosurgeons at The Toronto Hospital, Toronto Western Division. They did not speak in terms of miracles, but of my sense of need for meaning and hope in my life. They exercised a transforming influence on my life by performing two experimental neurosurgical procedures which together greatly restored my mobility. The saga of these operations has been recounted in previous issues of this Report. I could walk again. We take all the normal activities of daily life - walking, eating, speaking, writing - for granted Until something happens that puts constraints on us. Like Parkinson's for instance. I had to relearn normalcy, the way that most of the world does things. Following half a dozen years of increasing abnormalcy, this was a pleasure! The pleasures of life tend to become sophisticated with the complexity of living in a large city in our time. Since my two operations, our family life has simplified because of a new awareness of what is important and what is not. We place less emphasis on material things and focus more on the joys of nature. This process has not been entirely voluntary for us. In the fall of 1992 my wife, Esther, was diagnosed with chronic progressive Multiple Sclerosis In the Spring of 1994, I was appointed President of the Toronto Chapter of the Parkinson Foundation of Canada and was elected a Director of the Foundation in the fall of the same year. In April of 1994, we were very concerned that controlled release medications, Sinemet CR™ for example, were not on the Formulary, a list of prescription drugs approved for automatic reimbursement by the Ontario Drug Benefit Plan, the government-funded plan for seniors and people on welfare. Special application had to be made by the patient's physician, a costly and time consuming process which could be canceled by bureaucratic whim. On further investigation, we learned that some medications had been approved on a ‘crisis list' for diseases and conditions that had ‘emergency status, cystic fibrosis drug therapy, for instance. While not questioning the merits of these drugs on the ‘crisis list', it seemed manifestly unfair to have important medications approved, denied, or on the crisis list purely on the basis of the effectiveness of those advocating the drug. As well, we believed that families should not have to do without food or clothing to buy medications, or declare bankruptcy in order to receive social assistance and participation in the Ontario Drug Benefit Plan. At the Annual General Meeting of the Foundation in September, 1994 I presented a paper "Restoring Dignity: a drug plan for all Ontarians". The plan was designed to provide universal coverage with a graduated co-payment schedule based on the income tax system. Naturally, the people with Parkinson's who attended the meeting enthusiastically received the plan. As well, interest was shown by both the Ontario and Federal governments and I was invited to present the plan to a Federal Task Force. We thought we had several months, if not years, of lobbying ahead of us before the plan was approved. Imagine my surprise when, in early December of 1994, The Government of Ontario announced The Trillium Drug Plan which incorporated all the essential elements of the Toronto Chapter's plan, except that it was not progressive enough. Following a change of government in 1995, the Chapter Executive made further representations, with the result that the co-payment was made much more progressive. The Trillium Drug Plan was the first and most successful example of my new mission in life: to ease the burden of having Parkinson's. It also illustrated the benefits of working as a team rather than going off in several directions at once. I made the decision that I would dedicate my life to others, to work in such a way that having Parkinson's would be less burdensome than it is now. I began receiving invitations to speak at Chapter and Support Group meetings. Sharing my experiences as a person with Parkinson's has been very rewarding, because invariably, others have shared their experiences with me about how they coped. It has been a privilege. Often I reminisced about how frightened and alone I had felt at the time of my diagnosis eighteen years ago. If only there had been someone available who had been through the whole experience of Parkinson's, to whom I could have talked and who could have related his/her experience as a person with Parkinson's to me and my situation During a conversation with my good friend Dr. Tony Graham, a cardiologist who has provided real leadership to The Heart and Stroke Foundation of Canada, he mentioned a programme initiative of his group. Called Peer Support, the programme used patients who had survived heart attacks and strokes to offer support to those just going through it. As we chatted, I realized that this concept, with some modifications, could be applied to the Parkinson Foundation. After discussing the idea with staff and the Board of Directors, the Parkinson's Peer Support Programme was launched in January, 1996 with eight carefully selected volunteers. We all took part in a six week training programme, led by Mrs. Pat Fleming, an experienced case supervisor and a person with Parkinson's herself. The sessions covered topics such as confidence building, community resources, what to say and, more importantly, what not to say. We were honored by having our Peer Support Programme included in the resources made available to patients at the two hospitals in the greater Toronto area which have movement disorder clinics. This article has recounted some of the successes I have had in my second chance at life. They would not and could not have happened without the support of my family, my medical-surgical team - who consistently provided me with the best medical care in the world, my two mentors, Tony Graham and Lew MacKenzie, every member of the Foundation - for they are my support group. Their support and encouragement has been the main reason for my good fortune.