My Parkinson’s journey began about forty years ago when my grandfather was diagnosed with the disease. I watched him struggle as tremors and dexterity worsened. Eventually, common tasks like buttoning a shirt became impossible without help. And walking evolved into a slow, painful, awkward experience. But I never heard him complain. To the contrary, he maintained an incredible sense of humor, dignity, and grace notwithstanding the inelegant demise the disease suffered upon him during his latter years.
Nine years ago I began to notice an occasional, odd tingling in my left hand. Over time the tingling became more sustained before changing into full-fledged tremors. Finally, I visited a neurologist (when I was fifty-eight years old – I’m sixty-four now). I still vividly remember sitting in stunned disbelief when she said I had Parkinson’s. (Trivia question – the average age of diagnosis has fallen from 72 to 58 over the last couple of decades. Why?)
For medical geeks out there who may be interested in the pathology involved, Parkinson’s is caused by an irreversible loss of certain dopamine producing brain cells called neurons. By the time symptoms appear, 80% of the brain cells have already died. Notwithstanding lots of promising research with things like stem cells and deep brain stimulation, the disease remains incurable.
Adding insult to injury, about a third of all Parkinson’s patients develop dementia.
Symptoms (tremors) can be moderated through a therapy of dopamine drugs for a while but eventually they lose effectiveness as the disease progresses. Forty years ago my grandfather took the exact same drug I currently take. Not a lot of progress in that regard.
And Parkinson’s is an equal opportunity disease, affecting more than ten million people of all walks of life around the world. About a million of those people live in the U.S.
Most people know at least one person personally who has dealt with the disease.
Some of the notables who have suffered (or currently suffer) from Parkinson’s include Pope John Paul II, Johnny Cash, Robin Williams, Linda Ronstadt, Muhammad Ali, Billie Graham, George H. W. Bush, Salvador Dali, Janet Reno, Sir Michael Redgrave, Vincent Price, and Michael J. Fox. The latter, of course, has courageously dealt with Parkinson’s for more than a quarter of a century. He has also led the charge in raising Parkinson’s awareness through the Michael J. Fox Foundation.
In my typical long winded way, I have finally reached the point of this essay.
In response to my diagnosis, I have taken up writing as therapy. (I’m even learning to use speech recognition software to type!)
Last year I wrote a short story about a soldier’s struggle with Parkinson’s entitled Morning Chemical Assault (http://www.crfenergy.com/morning-chemical-assault.html ).
This year I used the story as a means to raise $500 for the Fox Foundation by posting it to my Facebook page.
I wish each of you the best in your own Parkinson’s journey, whether as a patient, caregiver, family, friend, or in any other capacity.
Your shaky friend,
Chuck (a/k/a Alasdair)