On December 20, 2016, the neurologist told me I had Parkinson’s disease (PD). I really didn’t know how serious that was, and looking back, that was a good thing. Armed with a prescription, I headed home determined to learn all I could about PD. I voraciously read all I could about the disease from everywhere: sites like Parkinson.org to professional journals that published peer-reviewed medical papers.
Not knowing much about Parkinson’s allowed me to consume as much information as possible with a clear head. I learned of the Houston Area Parkinson’s Society (HAPS) and began attending a support group for newly diagnosed people. I attended a four-hour Saturday morning Parkinson’s 101 meeting taught by a movement disorder specialist.
Other opportunities followed and I found myself in what can best be described as part of a Parkinson’s Family. This was all great, but once I heard others talk about their experiences, the other shoe dropped. Between the PD and the Pramipexole I wasn’t sleeping more than four hours a night. Very early one morning I found myself sitting in a dark house as the realization of what was ahead hit me like a ton of bricks. I never felt so down in my life. Eventually the sun arose, as did my wife, and life went on. This dark side became a fairly regular companion in the early morning hours.
My wife and I discussed scenarios, rearranged our travel plans to put the more physically demanding ones closer to the present and got on with life. I took part in Moving Day DC; the Houston Marathon 5K with HAPS; and PD Self offered through HAPS. All these things combined with the support group and educational sessions were invaluable.
My biggest issue in the near term was dealing with the depression and side-effects from the Pramipexole: sleep issues, swelling in my lower legs, significant weight gain. I began to wish for the PD symptoms rather than the medicine’s side effects.
I decided to move from my neurologist to a movement disorder specialist. While I liked my neurologist, the nuances of PD caused me to want a specialist. The switch was great, and not just because she moved me from Pramipexole to Carbidopa/Levodopa. She prescribed an anti-depressant for the dark times. The prescription side effects and regularly scheduled dark times are in the past. I track my issues between visits and we have conversations about what’s going on. It’s become a partnership in the treatment of my Parkinson’s.
I’m back playing golf and going to Rock Steady Boxing twice a week. It’s a great workout and I’m feeling better now than any time since my diagnosis.
I still worry about what lies ahead, but I know I have a support team out there: my wife and family, my Parkinson’s Family, my neurologist, the gym, etc.
I am content knowing that Parkinson’s is what I have, not who I am.