By Christopher Jamele
April has me thinking back more than 30 years ago to a very poignant time in my life. I was a college student at the crux of life when my father revealed that he had Parkinson’s disease. The contrast in our positions was almost perverse. I was on the brink of graduate school with hopes and ambitions for what the future held. Dad had just been told he was in for the fight of his life. In fact, it was the fight for his life. We each faced uncertainties of strikingly different sorts.
It hurt to learn that my father had been diagnosed with the disease two years before he shared the news with my sister and me. I’ve come to learn this reticence to mention a diagnosis is all too common with Parkinson’s. The stigma of a disease that is progressive and which displays its symptoms outwardly is hard to overcome even though the onset is generally gradual. The early symptoms are often subtle, meaning they are unnoticed or overlooked by many. Dad displayed no terribly troublesome symptoms that I could detect until some years later.
Parkinson’s disease frightened me. The only thing I knew about it at the time was that a family acquaintance, the father of a friend of mine, had been diagnosed years before. After battling the disease for some time he attempted suicide only to wound himself terribly and survive. I had no idea what my father, or our family for that matter, was in for. I was expecting the worst.
As it is, my father battled the disease for more than 20 years. Much of that time, he lived a good life. I have learned a great deal about Parkinson’s disease, and I continue to do so. Yet, there remain too many unanswered questions, such as who is most vulnerable to Parkinson’s, how the disease manifests itself and what steps will finally lead to a cure.
Learning about the disease should be important to all of us as there is a prevalence of the disease in Western New York, and the rate of diagnosis globally is rising at an alarming rate. Dr. Ray Dorsey of the University of Rochester, a Center of Excellence in Parkinson’s research, co-authored a pair of current studies. One showed that over a recent 25-year period, the rate of Parkinson’s rose nearly eightfold faster than that of Alzheimer’s, which is currently the world’s leading neurodegenerative disease. The second study chillingly identifies Parkinson’s disease as a potential pandemic, similar to influenza, HIV/AIDS and Zika.
It is a time for all of us to become more familiar with this disease. Many landmarks, buildings and homes will be lit in blue for at least a portion of the month to help raise awareness. Many businesses, schools and offices are hosting Wear Blue Days or a program whereby paper cutouts of the Parkinson’s Foundation logo can be personalized and hung for a small donation. These donations help to support local programming for the tens of thousands in our area who have been affected by Parkinson’s.
Education is also vitally important. Better understanding the disease prepares people for the battle against its symptoms and emboldens those who are supporting a loved one with a diagnosis. The Western New York Chapter of the Parkinson’s Foundation informs the community through regularly update literature, seminars and a newly redesigned website (parkinson.org). The easiest and, possibly, most helpful approach might simply be talking about Parkinson’s, sharing stories, asking questions, reaching out. If we #StartAConversation, it could make an enormously positive difference for many.
Christopher Jamele of Kenmore is executive director of the Parkinson's Foundation in Western New York.