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So You've Been Diagnosed With An Incurable Progressive Degenerative Neurological Disorder


My personal 2020 was one long involuntary holiday, and like a holiday it all kinda blurs together. I couldn't play out. At all. I spent a lot of time sorta twiddling my mind. I did manage to release a new CD in midsummer (note to the blissfully innocent: yes Virginia, CDs still exist outside of museums and the collections of obsessive music fans and Olds). I also received self-employment unemployment support for the first time ever in my life (because I couldn't play out. At all.) From Republicans, yet.

But like the Good Book says, everything comes at a price. And you always pay more than you wanted to.

Now I have never been what you would call the most coordinated clown in the car. Even in my prideful youth, what zippidiedoodah I may have had as a musician, the closest thing to balleticism I ever expressed (juggling ran a distant second), was always subservient to the musical skills I carried around under my scalp and behind my eyes. I endlessly recited the tired joke that the tragedy of my life was 99th percentile ears, 50th percentile hands. Contrary to best-selling opinions, ten thousand hours of practicing scales made not an iota of difference. And just to top off the spinach sundae, long abouts the 90's I started developing a quiet little tremor, nothing innately disturbing, just a kind of persistant coffee shakes.

So long about three fifths of the way thru the Year That Hindsight Wants To Forget, in the midst of the onslaught of the the Delta Variant, I began noticing the shakes getting worse. And I started falling down more often than normal, which is to say I started falling down. And my guitar playing, picking and strumming both, slowed down even more. I attributed that last to lack of practice (because I couldn't play out. At all), but there was no denying that something was going on. Or more correctly, I could deny it, but every time I recorded a video — and I recorded a lot of them; that was also the year that musical video collaboration came into its own — I could see my own body correcting my denial, making like a maraca in a salsa percussion section.

Ada, stalwart veteran of the allopathic system, hectored me into getting a neurological exam. The friendly neighborhood overworked understaffed movement disorder specialist finally fitted me in in December and diagnosed me with your basic essential tremor (I coulda told him that) and advised me to get something called a DATscan. Why? Because 25% of essential tremor cases turn into Parkinson's Disease and the test could rule that out.

And with one thing and another and its brother and miscommunication it was June of '21 before I finally went thru the grinder and actually got scanned. It involved shooting me up with hideously expensive, slightly radioactive iodine compounds and using single-photon emission computed tomography to monitor its uptake into dopamine receptors in the substantia nigra region of the midbrain. Very Medicine Of The Future. I kept looking around for Captain Kirk.

But while the test was delayed to the point of resembling Zeno's Paradox, the diagnosis came with true 21st century speediness the same day: "Scintigraphic findings are consistent with bilateral nigrostriatal degeneration as may be seen in Parkinson's disease and Parkinson's plus disorders."

In English: kkkkkkkkk.

Now, up until that very moment, I'd always taken a distant, somewhat disinterested approach to the prospect of chronic illness in my life. Like most (healthy) people, I just assumed that it was something that happened to someone else and went on my merry way. It should be noted that this is itself a very healthy attitude: the Fickle Foot Of Fate is not something you can really avoid should it choose to descend upon you (to the accompaniment of The Liberty Bell), and spending all your time looking over your shoulder can give you one heck of a crick in the neck. Or like the t-shirt sez: Eat Wisely. Exercise Regularly. Die Anyway.

And in the twinkling of a diagnosis, that all changed. This was my very very own living life and I couldn't just blow it all off anymore. In the absence of a definitive visit with my friendly neighborhood etc doc, who was booked up for another six months, I went on the standard well-established medication L-Dopa (aka vitamin L), and had a long session with Doctor Google, with results that you can easily suppose.

But in the flurry of contradictory out-of-date information, I seined out some bits of solid advice, Ol' Doc Parkinson's Rules For Right Living if you will:

1) PD doesn't kill you (immediately). If you develop it late enough in life and you're reasonably lucky, you'll probably die of something else first. I know, I know, cold comfort. Still.

2) PD is an affliction that responds very well to lifestyle changes. All the experts agree that, along with medication, exercise, good sleep, diet and remaining active and engaged can mitigate both symptoms and speed of onset. You may not be able to stop the Foot, but you can sure slow it down.

3) That said, PD is at this time incurable, progressive and degenerative. So if there's something in your very very own living life that you were meaning to get around to, this might be the time to do it.

On the other hand, you can substitute "life" for "PD" in the preceding three rules and be, well, pretty accurate. Just the condition of being 70 is precursor to any number of nasty little possible inconveniences, and at least one inevitable one as well. All PD has really done is brought that inconvenient truth to my conscious attention, and perhaps intention as well.

So here I am eating wisely and exercising regularly and thinking just a little more about my desultorily fabulous artistic career, archival and speculative alike. And embracing another aphorism of codgerhood: Any day you wake up is a good one.

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