As a 44-year-old husband and father, I’m reflecting on eight years with young-onset Parkinson’s disease (PD) and seeing a series of phases. The first phase began with a tiny tremor in my right thumb. It progressed into a dragging right heel and a right arm that won’t swing when I walk. This phase lasted about three years and abruptly ended when I was diagnosed.
The second phase involved fear and loathing, yet very little change. I was living with small frustrations but no problems. In fact, I was optimistic and grateful I didn’t have MS or ALS. I came to accept I have a movement disorder, so I thought I’d be able to accept a future where my body would be a problem, but my mind remained intact. After two years, this phase faded into the next.
As an IT professional, my family’s livelihood depends on my ability to operate a keyboard and mouse. When those simple tasks became difficult, I finally sought expert help. We found an excellent local neurologist who walked us through this truly difficult period. After trying different medications, I found relief for my relatively minor symptoms with the inevitable carbodopa/levodopa.
Later that year, my brain and body really betrayed me. I became depressed. I’m not talking about the kind of depression where you feel sorry for yourself because you have a progressive, degenerative disease and it’s not fair. No, I was feeling was a complete lack of feeling. I had lots of muscle pain and no motivation. I was familiar with clinical depression, but I was introduced to something I’d never experienced before: debilitating anxiety. Somehow, I had missed the part of the “Welcome to your Parkinson’s” pamphlet that described incapacitating depression, anxiety, insomnia and memory loss as part of the PD experience. This is when I started asking existential questions: Is this my future? Who am I? What now?
My wife took over when I stopped being able to help myself. She signed me up for physical therapy, psychiatric therapy and insomnia treatment. After a short three months, I felt better than I had in more than a year, ushering in my latest phase. I learned to manage my symptoms with exercise, medication, and my ultimate mental therapy: fly fishing.
This phase is now approaching sunset. I started having levodopa-induced dyskinesias last year. My right arm and leg have a mind of their own when I’ve had too much levodopa. Unfortunately, “too much levodopa” is now not enough to keep my symptoms at bay. We expanded my care team and I’ve been offered the chance to have a deep brain stimulation (DBS) system implanted.
Having brain surgery probably qualifies as the dawn of a new phase in my Parkinson’s adventures. DBS surgery was not an easy decision. Research and family support have brought me understanding and peace. I’m still a little apprehensive, but I’m ready to try this next phase.
I had the first of two surgeries to implant a DBS system at the Mayo Clinic in Minnesota on April 26, 2017. I enjoy writing and sharing my story and I hope I can help other people through this process down the road.
Chris Rigsby writes about fly fishing and Parkinson’s as “The Fading Angler” on his blog.