The Lesser of Four Evils
“Why are you dragging your leg?” “Why are you limping?” “I can’t read your writing. Is something wrong with your hand?” I was asked these questions and many others more frequently as time sped onward toward the end of the 20th century. Most of them came from the residents and staff at the nursing homes where I worked. Some came from friends, others from family, especially my mother-in-law. She had Parkinson’s and she was convinced that I did too, based on my symptoms which were similar to her early ones.
I found that I had increasing difficulty taking care of my residents, having to do things with my left hand instead of my dominant right one. My handwriting was becoming illegible, looking more like chicken scratch. Finally admitting that something wasn’t right, I went to my doctor. Thus began a 2-year journey to find out what was wrong with me.
I had x-rays done, I went to a doctor of physical medicine, and I had an MRI done. Finally I ended up in the office of a neurologist in February of 1999, one month before my 40th birthday. He said, “It’s rare that we find Parkinson’s in someone so young. It could be worse: you could have had a stroke, you could have a brain tumor, or you could have MS. If you had to have any of these four, Parkinson’s would be the lesser of four evils.”
Once the shock and the anger wore off, I began to accept that I had an incurable illness that would slowly rob me of my independence. I began searching the internet for information about PD, and soon discovered a whole new world of others who were coping with the same thing. I became a regular in the chat rooms, trading stories and tips with fellow “Parkies.” I attended a symposium in Canton, OH and became hooked on the opportunity to meet them in person. I have been to Canton twice, as well as Albuquerque and Chicago, and value the friendships made.
Sadly, my Parkinson’s took its toll on my marriage, and I was divorced at the end of 2003. I moved back to my hometown of Cleveland, where I now live with a wonderful man who has taken on the role of caregiver for me. I don’t know some days how I would get along without him.
Medications were effective in controlling my symptoms for several years. I was soon stuck between being too “on” with wild dyskinesia, or too “off” with bradykinesia, freezing, and balance issues. In July 2006, I had bilateral Deep Brain Stimulation, and it has changed my life significantly for the better. I feel like I’ve gotten back the past four years that PD has taken from me. I danced at my daughter’s wedding, and look forward to holding grandchildren without fear of dropping them.
There is a song by the country group Sugarland that I have adopted as my personal anthem. “Stand Back Up” says just what I feel:
You’ll know just the moment when I’ve had enough.
Sometimes I’m afraid and I don’t feel that tough,
But I’ll stand back up.
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