“Tis I, the Spirit of a Thousand Columns Past, back after a twelve-month silence to talk at you again in the flesh!”
(Sorry, but I’ve just reveled in the 1951 “Christmas Carol” film starring Alistair Sim; I can’t get the language and tone out of my head. What a film!)
But I am back, like Jacob Marley, not to haunt you but to talk with you again, at least once a month. And how I’ve missed our visits! As you may remember, I took the year’s sabbatical because Parkinsonism was so wearing me down that I thought I’d better break off and catch up on a stack of other writing projects.
And I’m back, not because Parkinson’s has suddenly vanished, as Marley did, but because I really did a lot of gaining ground: That stack of unfinished projects no longer threatens to topple and bury me at my desk.
What have I done? Well, a half-dozen articles in magazines, plus a full-length novel in the publisher’s hands, plus two other books finished and seeking publishers--and two more, each two-thirds done.
What a good boy am I! And Santa, by the way, rewarded me, via my dear Anne, with a magnificent Bose sound system that I’d rev up and crack the plaster in my man-cave, if we weren’t trying to sell this place.
By the way, one of those orphans in the storm, a book searching for a publisher, is meant for children, aged seven to ten; but, I think, it’s fun for adults, too. A test reading with a California class of nine-year-olds doubled them over with laughter, and I’d love to try it out with a couple of appropriate local classes. Teachers, any takers?
Oh, it’s title is “Sam the Boa, Master of Absolute Uncapturabilityness.” (I know the last syllable is unnecessary, but he’s a very long snake, after all. . .)
Parkinsonism and I are still wobbling along, arm in arm. Some days I’m in the lead, and others it pulls well ahead of me. More balance problems, more diverting hallucinations, occasional speech sloppiness, and a memory that seems to be behaving like the front end of a glacier: big chunks breaking off and drifting out to sea. But there’s still enough of me left to work with.
People tell me that it’s important that I keep describing what this disorder feels like from the inside, and I intend to do so occasionally in subsequent columns. There is, however, something important to share with you right now.
Across six years or so, Anne and I have been assured that I’m not dealing with classic Parkinson’s Disease, but with some one of almost a dozen syndromes that are first identified by the basic symptoms of PD (tremors, imbalance, shortened gait, etc.), but also have other complicating symptoms. This “family” of diseases is called, “idiopathic parkinsonism” or “parkinson’s plus” or just “parkinsonism.”
So that’s where I’ve been parked, as it were, for a half-dozen years. I’m somewhere inside that family—a dysfunctional family, if there ever was one.
Lou Gerhig’s disease, is in there, and Huntington’s Chorea, Multiple System Atrophy, Lewey Body Syndrome, and Corticobasal Degeneration. Besides sharing the basic PD symptoms, they all raise hell with one’s basal ganglia. These, which include PD’s origin, the “substantia nigra,” form a control complex that affects, to one degree or another, just about every function of one’s body and mind.
So, how does one find his place in the line-up of variations?
In once sense, it doesn’t much matter. All of these disorders are incurable, irreversible, degenerative, terminal. (What can be controlled, to varying degrees, are their symptoms; the eighteen tablets and capsules I take per day do a pretty good job of that.)
But final determination of just which of the bozos has been at work has to wait for an autopsy, and I’m not inclined to rush toward that.
What can be noted, however, is what diagnosticians call “the maturing of symptoms”: i.e. the way they multiply and get worse.
And that’s where my dear bride and I are these days. We both watch the symptoms; and, in many ways, Anne’s observations are more important and objective than mine. I’m inside this thing, you see; and so my grasp of what’s going on, especially cognitively, isn’t as trustworthy as her’s. God bless my care partner!
More about this later, but recent new symptoms are starting to narrow thee field of possibilities. Soon, maybe, I’ll have a tentative name for what’s been creeping along behind me.
And so here I am, old friends, with more balance problems, more diverting hallucinations, occasional speech sloppiness, and a memory that behaves like the front end of a glacier. But for now, friends, there’s plenty enough left of me to visit with you again. Oh, how I’ve missed that!