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?