I am determined not to let Parkinson's, which has stolen so much, steal my dignity. That is what I am really holding on to. Dignity. It's why I exercise, practice yoga, and play the drums. It's why I shave every day. It's why I dress well and make sure I look my best. As a cardiologist with a predominantly geriatric patient population, I often noted in my files when a patient started looking unkempt, a look that signaled that he had surrendered, been beaten down, or no longer cared enough to pull himself together. I no longer save my best clothes for special occasions.
Now, every day is a special occasion.
The daily struggle with Parkinson's disease, especially in this form, is relentless. There is no reprieve, and the future is uncertain. Even on the good days, Parkinson's lurks like an unwanted shadow. On the bad days, my frustration boils over into anger and despair.
In my case, Parkinson's is a twenty-four-hour-a-day affair, because the associated Lewy body disease brings forth vivid nightmares and violent sleep on a weekly basis, nightmares so realistic that I am likely to act them out. I have dreamed of being attacked and, in an effort to fight back, have inadvertently struck my wife, Vicki. This is extremely abhorrent and sorrowful to me, but it is part of the picture of our daily lives.
In the mornings when I wake, or when I stir from the midday nap that has become as essential to functioning as my medication, I lie entombed in my own body for ten or fifteen minutes. This paralysis of mind and body lasts until enough synapses can spring into action to allow me to move.
As a young intern and resident, and later as an attending cardiologist, I was accustomed to being summoned suddenly in the middle of the night. I could launch myself out of bed, get dressed, and perform at my intellectual peak within moments. I could make life-and-death decisions within seconds of a nighttime phone call. Today, I wait for thousands of tiny cellular engines to start themselves so I can rise from the bed and begin another day, trapped in a body that no longer fully responds to my will and subject to a mind that spins at 33 RPM in a 78 RPM world. Neurologic disarray affects every aspect of my life.
One small accommodation to my Parkinson's is our master bedroom, located on the ground floor of our home. This is where I begin my day, staring at the ceiling. We're on the ground floor because navigating stairs can be difficult for me. Stairs often appear fused together, navigable only by feel and with one hand firmly on the railing.
The tricks my eyes play on me are not a matter of focus. Objects sometimes appear strangely flat, without dimension. Double vision is a problem. Minor hallucinations from time to time make it hard to trust my own eyes. Many patients with Lewy body disease experience frightening hallucinations, often involving insects or animals. I have been spared such hallucinations so far, though I do sometimes "see" stationary objects move or mistake a pan of brownies for a loaf of bread. Sometimes, while I look at a person or thing, the object of my vision is replaced, just for a split second, with the image of another. The hallucinations are subtle and transient, but disconcerting nonetheless. Wasn't that chair on the other side of the room a minute ago? The occasional auditory hallucination breaks into my day as well. I will hear an alarm, convinced it is sounding, but only I will hear it.