Parkinson’s: Two Years Later

So much for last year’s prediction that “As I learn better strategies for working within my limitations … it should be easier to make more time for this site.” Since then I’ve shared only one review and a short remembrance of Millicent Dillon, unhappily constrained by the (mostly) invisible Parkinsonian forces that interfere with my daily life. My goal of resuming a normal posting schedule this summer is unchanged, and if that’s overly ambitious we’ll cycle through the rest of the seasons until Patty Duke’s crusading for justice once more. But we’ve gathered here today for our second annual year-in-Parkinson’s review, so let’s get it out of the way.

Quickly, for the uninitiated, I was diagnosed with YOPD, or young-onset Parkinson’s disease, at 40, following a slow accumulation of symptoms that began in my late twenties and accelerated in my late thirties. It’s normal to walk around in a daze during that first year post-diagnosis, feeling like you were just sucker-punched. By year two, many of us have regathered our bearings and are back in the fight, slower and more guarded than before — and perhaps already covered in bruises from gracefully pinballing off walls and door frames, as yours truly is wont to do.

In one of my favorite jazz standards, Duke Vernon and Ira Gershwin’s “I Can’t Get Started,” an overachieving narrator recounts their accomplishments and laments an inability to woo the object of their affection: “I’ve got a house, a showplace, but I get no place with you.” That’s how I’ve felt about writing for the last year or so. Even worse, it’s how I’ve felt about life, beginning and ending with the sleep problems that plague many people with Parkinson’s. My legs take on a life of their own overnight, my hands and neck clench and twist at odd angles, and for the past year I’ve been startling Crankenstein, my deep-sleeping wife, awake by verbally and physically acting out unpleasant — and occasionally profanity-laced — dreams.

Falling asleep, which was already a problem, has become an ordeal, and when sleep comes at all it’s fragmented and typically limited to three to four hours. Unfortunately, chronic sleep deprivation amplifies motor symptoms and makes it difficult to think straight, which makes it harder to write and function in general. Last year, after forgetting to pay a couple bills on time — uncharacteristic oversights that were fortunately caught during their grace periods — and committing frequent paraphasic errors (like telling our dog “meow” instead of “woof” and saying “Merry Christmas” when I meant “Happy Halloween”), I underwent cognitive testing. The neurologist recommended it to establish a baseline that would be useful for monitoring.

The results met my expectations: I’m fine in important categories like judgment and long-term memory. My spatial reasoning has taken a hit, which is frustrating but not too impactful overall, and my short-term memory is mildly impaired. It’s the erosion of planning and organizational skills that really smarts (Crankenstein, who thrives in chaos, used to complain “You have organizers for your organizers! It’s unnatural!”), and the language issues would be devastating if permanent. We were assured by the memory expert that I might recover some — maybe even most — of what I’ve lost in those departments once my sleep improves, so I’ve pinned my hopes on that.

Since last year’s update I’ve completed several therapies and exercise programs (physical, speech, breath-strengthening) to address Parkinson’s problems. My medication’s still a work in process, its absorption complicated by Crohn’s, and Botox continues to help my neck and shoulder. With the support of my doctors, I grudgingly applied for SSDI and was approved this year. Accepting that I’m currently unable to work — which, with any luck, will change in the future — was emotionally brutal and still hurts. But now I don’t have to worry about health insurance coverage if my marriage is ever invalidated, or if Crankenstein predeceases me or leaves me for Helen Mirren, which is a relief.

Thanks for continuing to follow along and my apologies that this wasn’t a particularly uplifting read. I expect next year’s update will be more encouraging and will do my best to post a review or two in July.