(In a Sopia Patrillo voice) Picture it. Park Ridge, IL. 2011. A young, skinny, attractive gay man notices some odd shaking happening while holding the church bulletin one Sunday morning. He whispers to his husband, “check out my thumb,” as it shakes ever so slightly. He doesn’t make too much out of it, but deep down he knew what it was because both his paternal grandparents and great uncle had the same issue. That young, very good-looking man in this story is me.
When I first started to notice the shaking in my thumb, it was sporadic. I didn’t worry about it too much. Then, it started to affect my whole hand. What was an every-once-in-a-while thing became constant. I started meeting with a neurologist by my house trying various forms of medication. Eventually normal tasks like buttoning my shirt and pants became a frustrating ordeal. By the time I was diagnosed at 37, I was trying to plan for the future with long term care insurance and life insurance – both were ultimately denied.
By 40, the tremors spread to my whole arm and down to my right foot – my driving foot. I thought that if I didn’t do something more drastic soon, I would end up on disability within five years.
I found out I was a good candidate for Deep Brain Stimulation (DBS) surgery. I signed up and didn’t want to know any details. My eyes were on the prize.
My device was turned on four weeks following surgery. Within two months, I was 90% better. Most things became easier. I can now button my sleeves with ease. Playing the piano and writing remain a struggle but are still better than before.
My support system is amazing. I have incredible family, friends, and coworkers, and have gained a new group of friends through Parkinson's support groups.
I try not to take life too seriously. I’ll be the first to make fun of myself for spilling food on my shirt or soup on the person next to me.
My advice for anyone newly diagnosed is to stay active and involved with your hobbies and friends.
Tell everyone you meet about your Parkinson’s. At first, I didn’t want people to think I was shaking because I was one drugs. Then, I found that many people are going through similar struggles.
Because I told the reading specialist at the school where I teach, I found a neurologist at Rush Hospital, a Parkinson’s Foundation Center of Excellence. It’s also where I had DBS.
Sign up for the studies. The more people who volunteer for these, the sooner we’ll find a cure. If it doesn’t help us, it might help future generations.
Try not to compare yourself to others with this disease. Everyone is so different.
And, look for the good. If you can’t, find the people who do.