Once liberated from the bed, I head to the kitchen, though I sometimes get disoriented and find myself lost momentarily in my own house, or forget where I was going and why. I pause and wait for the confusion to pass. Such demoralizing mental lapses constantly punctuate my day and tear at my self-esteem.
In the kitchen, I have learned from experience to use my fingers to determine if the glass for my orange juice is right side up before I pour. I can see the glass, but I often cannot process what I see and translate it into an understandable reality. So I make one of what will be countless adjustments during my day to compensate. I move the tip of my finger to the top of the glass. If it strikes a solid surface, I know to turn the glass over. If my finger meets no resistance where the top would be, I know the glass is right side up. If my medication hasn't "kicked in," I concentrate as hard as I possibly can to pour the juice into the glass with trembling hands.
The common perception of Parkinson's as little more than body tremors is way off the mark. In his poignant and courageous memoir, the actor Michael J. Fox put a very public face to Parkinson's. Fox's predominant symptom, which is controlled with medication, is hyperkinesia—extravagant, involuntary body movements and tremors. But in many cases, like mine, the symptoms are global. No major function of mind or body has been spared. From visual perception, cognition, and speech to blood pressure, body temperature control, and sexuality, Parkinson's permeates every aspect of my being.
I have the classic appearance of a Parkinson's patient. I often appear hunkered down, head bowed, shoulders slumped, my once-fluid body rigid, my once-graceful gait an old man's shuffle. This has been hard to accept, for I have a strong narcissistic streak. My looks have always been important to me. I always believed that my interpersonal skills and my attractiveness (attested to by my wives) were largely responsible for my success in life. So I am trying to hold on to my looks too.
The dyskinesia, or lack of body control, is especially pronounced as I dress. Indeed, it would be more accurate to say "I do daily battle with my clothes" than to say "I get dressed in the morning." The once-simple task of putting my arm through a sleeve can be exasperating, and Vicki will often turn to see me on the losing end of a wrestling match with my clothing. Buttons are a particular challenge—fine motor skills have become an oxymoron in my life—and I don't have the balance to put my pants on standing up. The simple act of dressing in the morning is a physical and mental challenge and a constant reminder of the regression wrought by Parkinson's.
This lack of motor control, along with my now-slurred speech, is the source of many embarrassing moments. People may sometimes quite logically assume that I am drunk. At the end of a recent airplane trip, I attempted to put on my overcoat while standing in the aisle and ended up looking as though I were frozen in a straitjacket. Temporary paralysis is yet another symptom of my Parkinson's. It was surely a strange sight to those watching me on that plane, but to me it was just another in a series of moments of public humiliation to which I have become more accustomed over time.