Staying Positive with Parkinson's!
In a People magazine interview, Michael J. Fox discussed his experience with Parkinson’s disease (PD). He said it made him stronger, wiser, and more compassionate. He inspired many Parkies with his irrepressible optimism. While PD had robbed him of much, he believed it had also given him a gift as well, an opportunity to use his celebrity status to raise awareness of PD and to raise much-needed funds for PD research. I’ve encountered other Parkies who would agree that contracting a chronic, incurable, and progressive disease was not all bad. That there are some good things that can occur though that might be hard to accept especially if you’re newly diagnosed and still trying to come to terms with a life-altering diagnosis. This positive outlook is critical to living well with PD. Without it, one may not feel it is worthwhile to do the things necessary to successfully manage the disease.
Scared as hell
When I was diagnosed, I was anything but optimistic but rather scared as hell. As hard as I tried, I couldn’t see anything positive about having PD. Instead, I foresaw a future where I would be waging battle against an unbeatable foe, which is hardly the future I had envisioned prior to my diagnosis. Learning more about my condition did not alleviate these feelings. Rather, it just made me feel worse. I felt trapped in a body that was slowly failing me. I was spiraling downward and fast. I needed help and began to find it through prayer and my firm belief that God would take care of me and provide me with the strength to endure. I began searching for stories of people who found the strength to handle misfortunes far greater than mine. I reread an autobiography of Arthur Ashe, a tennis pro who died of AIDs after contracting HIV from a blood transfusion he had during heart bypass surgery. The courage he showed in facing his terminal illness inspired me. I also read the autobiographies of Pat Summit, Susan Spencer Wendel, and Elizabeth Edwards. Pat Summit was the Hall of Fame coach of the University of Tennessee women’s basketball team who was diagnosed with early-onset Alzheimer’s disease, Elizabeth Edwards was the ex-wife of former Senator John Edwards who died of breast cancer, and Susan Spencer Wendel was a journalist who died of ALS. The strength, courage, and resiliency displayed by each of these women helped me deal with the challenges I faced.
Support is critical
When my symptoms flare up and I’m having a rough day, I remind myself of the many blessings I have been given and that gets me through the day. I also refer to my list of inspirational quotes. One of my favorites is “When you don’t get everything you want, think of the things you don’t get that you don’t want.” Yes, I have been dealt a bad hand but there are far worse hands I could have been dealt like AIDs, cancer, Alzheimer's, or ALS, all of which are terminal diseases. At times, I look upon peers who are healthy and active and I envy them. When I see someone who is physically challenged I feel better knowing I’m not alone. Having the support of my family and friends is critical to staying positive. Knowing that I have so many people who care for me makes it easier to face my challenges and to be optimistic. It would be tragic to face this disease alone as many elderly patients do. My challenge going forward is to stay positive and to never lose hope. I know this will be difficult but I pray that I have the strength to avoid despair.
There is life to be lived
Tom Graboy suffers from an aggressive form of Parkinson’s called Parkinson’s with Lewy body dementia. In a letter published in the journal Movement Disorders, he wrote about why he still valued his life. "The soul", he writes, “is where hope lives; not a naïve hope that I will, by some miracle, have my former self restored, but hope that tomorrow, and the day after, can still be days from which a measure of joy and meaning can be derived. And from hope springs optimism that, even with great limitations, there is life to be lived.” This is what I try to remind myself of each day.
Do you or a loved one use smartphone apps to help with PD management?