The rigidity of body and loss of physical control and fine motor skills have also interfered with some of my favorite activities. Though I still play the drums, a passion for many years, I can no longer coordinate my feet sufficiently to generate the rapid motion of cymbals needed for jazz, and imparting rhythm—and drums are all about rhythm—is increasingly difficult. Drumming is becoming harder for another reason as well: Math is an essential part of music—whole notes, quarter notes, tempo—and I can no longer process mathematical relationships. Sheet music simply doesn't make sense to me as it once did.
Loss of physical control also means occasional drooling, sometimes when I am awake, but more often during sleep. When I wake up, I find that I have soaked the pillow with drool and the sheets with sweat. If I've had a good day the day before, waking up like this the next morning is an unwelcome reminder that Parkinson's is my constant companion.
Each of these manifestations of Parkinson's, no matter how trivial, erodes my sense of stability and my desperate need to feel that there is stasis—that I have battled Parkinson's to a standoff, at least temporarily. The appearance of any new symptom invariably leads to the inescapable conclusion that the disease is progressing.
Physical deficits are only one part of my daily battle with Parkinson's. My interactions with people are marked by a slowness of thought (called bradykinesia) that is as embarrassing as it is frustrating. It's more than losing my train of thought, though that happens a hundred times a day or more; it's having the words in my head, but being unable to move them from the part of the brain where thoughts are formed to the part that controls speech. The neural pathways are disorganized, like some fantastically complex highway system with overpasses and intersections, on-ramps and exit ramps, all leading nowhere. A thought forms, it gets sent down the pike, only to get lost in some culde-sac where it spins like a whirling dervish. The train of thought in such cases isn't lost; I'm well aware of the thought; but I cannot maneuver it to the place in my brain that will allow communication. Sometimes the thoughts will finally spin out of the cul-de-sac and find expression; often, however, they simply spin themselves out like a spent whirlwind, never escaping. The halcyon days when I spoke eloquently and with great confidence are gone. As I said, nothing, not even speech, is second nature any more.
It is this dementia, this progressive loss of cognitive and intellectual functioning, that is the hardest symptom of my disease to live with and the hardest to accept. I can no longer balance a checkbook or calculate a restaurant tip. The concentration required for two hours of often-halting conversation leaves me weary. A veil descends, like a night canopy over a birdcage, and I need to nap to recharge my diminished synapses. Many Parkinson's patients will tell you that having Parkinson's is like having a switch in your head, a switch that is not in your control; a switch that can be flipped up and down once an hour or ten times in a minute. Sometimes I simply shut down and wait out the power outage.