Written by John M. Vine
In my battle against Parkinson’s, a positive attitude serves me well. Three firm beliefs shape my positive attitude. First, I believe I should not feel sorry for myself. In a world in which many suffer, I do not complain about having Parkinson’s. Second, I believe I can manage many of my Parkinson’s symptoms. Third, I believe that Parkinson’s presents me with opportunities that compensate for those that it forecloses. For example, although Parkinson’s has limited my ability to play tennis, it has introduced me to many committed members of the Parkinson’s community.
When I was diagnosed with Parkinson’s in 2004 at age 60, I learned that Parkinson’s was a brain disorder, that its cause was unknown, that it would gradually get worse and that there was no known cure. I also learned that the symptoms were unpredictable but might include tremors, falling, impaired speech, hallucinations, delusions, dementia and depression. I was overwhelmed.
Since the vast majority of 60-year-olds do not have Parkinson’s, I wondered initially why I had the disease. “Why me?” I asked myself. I eventually recognized that there was no answer to this question and that, indeed, “Why me?” was the wrong question.
WHY NOT ME?
“Why me?” was the wrong question because it was based on the misguided view that Parkinson’s should apply to other people, but not to me. Millions of people are living with Parkinson’s. I had no basis for thinking I had the right to be exempt from Parkinson’s.
I chose to stop trying to answer the “Why me?” question and to focus instead on a different question: “Why not me?” I decided to make the best of the cards I had been dealt rather than waste time wondering why the cards had been dealt as they had. Although I didn’t have the power to defeat Parkinson’s, I could live with it.
Here are the basics of what I do to live with my Parkinson’s symptoms:
- Challenge. I view Parkinson’s as a variety of challenges that I try to meet as best I can.
- Consultation. I consult neurologists with expertise in treating Parkinson’s and (when appropriate) other experts such as physical, occupational and speech therapists, psychiatrists and ophthalmologists.
- Education. I educate myself about Parkinson’s and try to keep up with developments. I attend Parkinson’s-related programs and I consider trying new forms of therapy.
- Decision making. I participate in treatment decisions and I do not leave decisions to the experts. As the person living with Parkinson’s, I have a responsibility to participate. I ask questions and make suggestions.
- Exercise. I treat physical exercise as if it were medicine. I view it as mandatory rather than elective.
- Socialization. I resist isolation, I welcome advice and I participate in a support group.
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John Vine and his wife, Joanne, live in Washington, D.C.. John is a lawyer and the senior member and former head of his law firm’s employee benefits group. John’s blog post is derived from his book, A Parkinson’s Primer, An Indispensable Guide to Parkinson’s Disease for Patients and Their Families (Paul Dry Books 2017), a nontechnical, personal guide to Parkinson’s based on interviews with Parkinson’s patients and their care partners and written from a patient’s perspective. Learn more.