At 80 years of age, I know I won’t be around for “the cure,” but I will still be alive and kicking next week when I may feel embarrassed again about dropping a carton of eggs in the supermarket. God bless the researchers seeking “the cure,” but let’s not forget about those of us living with Parkinson’s disease (PD) who confront our problems daily.
After The Diagnosis
When I was diagnosed with early-stage Parkinson’s three years ago, I wasn’t surprised since symptoms had accumulated over the years. I felt comforted knowing that two words described a plethora of unrelated problems I had experienced — comforted until I searched the literature for ways to manage my PD.
I found a wealth of information on medication selection, dosage, timing, drug interactions and side effects. I was encouraged by the few articles discussing the positive impact of exercise, although most never went beyond the old Nike commercial of “Just Do It!” The same generalities appeared in most diet advice, though it was often contradictory.
But what I craved most of all — a strategy for walking on my favorite trail without falling or how to once again tie tiny flies for fishing — was absent. Even more upsetting was that many suggestions focused on actions to take only after symptoms had worsened. I wondered why it was necessary to deteriorate before anyone offered suggestions for preventing the symptoms from worsening.
A Better Definition of Parkinson’s
As a clinician and university professor for 30 years, I conducted research and developed intervention protocols based more on behaviors, and less on anatomical features. The definition of Parkinson’s can be as practical as those in speech-language pathology. For example, "Parkinson’s disease is a progressive neurological disorder that disrupts signals the brain sends to muscles, affecting both voluntary actions (such as walking) and involuntary functions (like breathing)."
This description accurately characterizes the disorder and highlights the behaviors that could be targeted: the transmission of signals from the brain to the muscles.
Parkinson's As A Messaging Problem
If we consider Parkinson’s as a messaging problem, a whole new area of research emerges, suggesting practical self-care strategies while the search for a cure continues. For instance, since 50-60% of behaviors are automatic, why not research strategies to regain the automaticity that PD has stripped from us? This is the type of behavioral focus in speech-language pathology that enables stroke victims to regain language. Hopefully, this shift will happen while I’m still alive.
Dedicated to Learning
As a retired university professor with clinical experience in communication disorders, I wanted to learn what worked and what failed in managing Parkinson’s. I found the Parkinson’s Foundation’s focus on management aligned with my interests.
I started reading My PD Stories to learn from those with PD and their caregivers regarding what I would most likely face as challenges increased.
I was also very interested in stories about what worked and what did not. Although I have nothing against traditional medicine, I was taken aback by the absence of remedial behavioral strategies to diminish PD symptoms with an over-reliance on medication after the symptoms appear. I was disappointed by the lack of solid data.
I had trouble accepting the commonly heard phrase, “If you’ve seen one PD person, you’ve seen one PD person.” As a retired researcher, to me the phrase indicates the person hasn’t looked hard enough.
Staying Connected Through Volunteering
For eight years, I was a bedside hospice volunteer until my REM sleep disorder forced me to stop.
As a result of volunteering, I learned that I received more than I could ever give. So, when I was asked to become a volunteer for the Parkinson’s Foundation, I immediately said yes.
First as an Ambassador (whenever I run, I wear my “Ask Me About Parkinson’s” T-shirt). Then over time, I helped set up various events, and last year I was an evaluator for community grants.
Learn more about the many ways you can volunteer for the Parkinson’s Foundation as an Ambassador today.
