An Army Vet Talks About Living with Parkinson’s Disease

Hand of an older adult man, holding a pen and writing in a notebook

Rob Cunningham, 66, of Hattiesburg, Mississippi, has been managing Parkinson’s disease for more than 24 years. When first diagnosed with early-onset Parkinson’s, he was the father of three young children: ages 4 months, 2 years, and 5 years. A Vietnam-era Army veteran, Cunningham owned and operated a number of restaurants in Tallahassee, Florida. Parkinson’s forced him to retire from those very active endeavors.

When did you first get diagnosed with Parkinson’s disease? What symptoms led you to go to the doctor? What were your first thoughts upon getting the diagnosis?

Tuesday, September 12, 1989, 2:30 pm. It was memorable. I went to the doctor because of a tremor in my right hand and weakness in that arm. I had also noticed that my handwriting had become smaller and smaller. My first thought was, “AAAIIIEEEEEE!” I was scared to death. My doctor gave me a brochure about Parkinson’s. All I could think of was, “[Am] I going to be able to swim laps any more?”

You were an early recipient of deep brain stimulation (DBS) treatment. How has that made an impact on your symptoms?

The DBS was a godsend. It smoothed out all of my dyskinisia (involuntary movements) and face distortion. The dyskinisia was my worst symptom. It was hard on my muscles and joints. I also lost most of my tremors, too. It has made life a lot easier.

You took up painting after you were diagnosed. How did you decide to do that? Does your condition impact your ability to paint? Does painting help you?

My sister gave me a book about Matisse, and I was so taken with his paintings. I figured I could do this, and here I am, 300 paintings later. Parkinson’s does impact my painting. Early on, though, I used the tremors to make different effects with the paint. Nowadays, I have less energy to sit and paint for too long at a time. I think when I first started painting, that is 15 years ago now, and it was just after I had to retire from running my restaurant, it gave me something to do and a way to connect with other people. I took some painting classes and even had painting parties where every guest had to paint something.

You illustrated a children’s book, My Uncle Rob. What is it about? What messages are you trying to send with it?

The book is about me, really. In it, a boy is close to his uncle, and when the uncle is diagnosed with Parkinson’s, he reacts to it. I think my paintings in it show that even when you have a challenge in life you can still be yourself. You don’t become Parkinson’s; you are still you.

You have lived with Parkinson’s for a long time. What advice do you have for others who have the condition, and their loved ones?

Number one is to keep exercising. Also, find a doctor who listens and who specializes in Parkinson’s. There are Movement Disorders clinics at many university medical centers and those tend to be good. The clinic at the University of Florida and the new one at the University of South Alabama have been good for me. Having faith in your medical team is really valuable. One way to meet the experts is to volunteer for clinical trials. I was part of a trial at Emory University for a new drug therapy. And while I still have Parkinson’s I met some great doctors through that program.

Article courtesy of NIH MedlinePlus magazine.