Does having Parkinson’s disease (PD) embarrass you? It did me!
It all started in June 2008, when at my first-ever visit to a neurologist I was diagnosed with PD. I knew that something wasn’t quite right with my motor skills. After numerous tests, the doctor explained to me and my wife that all of my symptoms were related to PD. It became harder to write because my handwriting was getting smaller and smaller. A sense of weakness and fatigue had set in, as well as the realization that I was not functioning as I should at work, home or church. I was aware that the most visible symptom of PD was tremors, but I didn’t have any. This made it hard for other peoples to see that I had PD.
As we were leaving the doctor’s office, he gave us a book that was supposedly meant to help us understand how Parkinson’s would affect our lives. As it turned out, the book had the most depressing outlook on life for a person with PD. At my follow-up visit, I asked the doctor if he had read the book. “No,” he said. That’s when I suggested he throw it away. Being diagnosed with Parkinson’s is bad enough, you don’t need to read a book listing every horrible side effect.
I began seeing another neurologist, a movement specialist. Instead of focusing on all the things I would not be able to do, he pointed out all the things I could continue to do with the proper medicine, exercise and right attitude.
Later a friend, who also has PD, gave me the book Navigating Life with Parkinson’s Disease, from the Neurology Now Book Series. My wife and I read it and felt much better. We had a much better grip on what to expect from this new, unwanted guest in our life. Now that I knew more about what was causing my symptoms—what next?
With no outward tremors, I hid my state of mind, ashamed. I did not want to admit to my friends or co-workers that I had PD. This turned out to be the wrong pathway to take for my new life with PD.
After serving four years in the Air Force, I earned a BS degree in Business Administration from Florida State University. Throughout most of my 50-year business career, through my marketing and sales experience I worked directly with a lot of different people, until I retired at the age of 70 in 2009. With all my experience in talking to people, how did I hide and never bring up that I have PD without causing myself more grief? I couldn’t! I felt I was living one big fraud. It bothered me every day to hide my PD.
I needed to shed this uncomfortable situation as soon as possible. Solution! Tell the truth about my new health condition. Explain PD as best I could to family and friends, telling them how it will play a part in my life and theirs. Sounds simple enough, but for me, it wasn’t.
One day I realized that my Parkinson’s was going to give away my secret, so I stopped my pretense and did the smartest thing I could do—I finally told my family and friends. Afterwards, I discovered that some of our friends have PD and many actually knew someone else who does too.
One of our church friends began seeing my doctor. We schedule our appointments the same day and travel there together. It’s our own little Parkinson’s support group.
What next? We can hope and pray that soon we will have a cure for PD. But in the meantime, don’t be ashamed to share with others your new lifestyle as a person living with Parkinson’s. The benefits of telling friends and family might be better than you ever would have imagined. Just think about how much larger your support system will be.