Since moving to the Niagara Falls area in 1980 I have worn many different hats in this community. I was the A/V and Stage Manager at the Lewiston-Porter High School for 26 years. I built and remodeled houses for 6 years, remodeling my own 1842 house in Youngstown, NY. I’ve raised 5 great kids and I was a Boy Scouts leader for nearly 15 years. Each hat I wore inspired a different ability in my character. I wore each hat with pride. Eleven years ago the good Lord blessed me with a new wife, two more children to love and it looked like my prayers for a normal life were answered. Six months after we were married, life threw me a curve ball. At 45 I was diagnosed with early onset Parkinson’s disease.
It is a terrible degenerative neurological disease that steals your life and your body a little bit at a time. This disease took away the job that I loved and it continues to steal my talents right from under me. It destroyed my plans for retirement, but most of all it wastes my time. There is nothing more precious in life than time.
How did I get Parkinson’s? Maybe it was my exposure to photo chemicals, pressure treated lumber or the fact that I have lived and worked downstream from chemical and nuclear waste sites for 35 years. How does someone like me deal with a life changing event like this? First and foremost, I depend on my faith in God. Second, my family and friends have been right there to support me. A sense of humor, good or bad, is essential. Third, I got as much information and guidance as I could. The National Parkinson Foundation (NPF) Western New York Chapter can answer any question.
The NPF Western New York sponsors support groups for both the caregiver and the patient and they have a variety of therapists and educational symposiums. Four years ago I volunteered to put on a new hat. It’s the team captain’s hat for Moving Day® Buffalo. Moving Day® encourages all Parkinson’s patients to keep moving to prolong the onset of symptoms. It’s a use it or lose it attitude. This hat put me way outside my comfort zone.
I spent 26 years in technical theater trying to stay behind the mic and camera and out of the public view. Now I am speaking up at church, volunteering for PSA commercials and posting on Facebook about this disease. It is very difficult because it attacks my typing dexterity, vocal abilities and a clear functioning mind at times.If you want to see what all the fuss is about, watch my video on YouTube from last year’s Moving Day® here.
To learn more about Moving Day, visit Parkinson.org/MovingDay.