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Keep fighting the good fight

Early in my journey with Parkinson's, I drafted a list of potential motor and non-motor symptoms that I feared most. I designated the top three – dementia, hallucinations, and dyskinesia – as milestones I would use to track my disease progression. I told myself that as long as I could keep these scary symptoms at bay, I would be "maintaining" — the best any of us living with a progressive, incurable disease can hope for. What I didn't know back then is that symptoms come and go, sometimes hour by hour, and with varying intensity. No one symptom signals the start of an irreversible downward spiral. We take ourselves down when we stop fighting back, take a dive, and stay down for the count.

I am inspired by friends who have lived with Parkinson's for 20 years or more, weathering repeated falls, several a week for months at a time; and putting up with terrible bouts of dyskinesia and freezing, all the while refusing to give in to this merciless disease. Their doctors tweaked their medications, dosages, and timing until these symptoms disappeared, just as quickly and inexplicably as they had appeared.

Diagnosed with Parkinson's 15 years ago, I recently started noticing mild dyskinesia in myself, usually when I'm fatigued, nervous, or upset… pretty much always. Initially, I refused to acknowledge it, hoping it would go away, or better yet, turn out to be a figment of my imagination.



Sheryl boxing

Then I watched a video clip of me presenting at the 2013 World Parkinson Congress, and there it was — the unmistakable involuntary writhing movements that make our bodies look possessed: dyskinesia.

As angry as I was, I knew all along that my Parkinson's symptoms would eventually advance and worsen, no matter how much I exercised. This is what defines a progressive disease. It is unstoppable and incurable, but we can slow the progression, and that I've done. The good news is that Parkinson's is not fatal, allowing each of us time to find our own way to maintain a reasonably good quality of life until a cure is found. The only predictable thing about Parkinson's is its unpredictability.


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blogger partner WPC 2016 in Portland