"Hope is the one antidote…I've had Parkinson's for 16 years, and I know I'm never going to get better. But I still have a life worth hanging onto. And that is enough."

 
Excerpted from an article by Joel Havemann, Times Staff Writer
November 23, 2006

 
WASHINGTON -- For people with Parkinson's disease, the rest of your life begins on the day of your diagnosis. It's your own Sept. 11…It's unforgettable.

For me, that day was Feb. 5, 1990. It was like a death sentence with no chance of a pardon. I was told control of my body would slip away. I feared the same would happen to my mind. The deterioration would be gradual, like the disintegration of a glacier — at the end of each year, more of the glacier would have dropped into the sea.

I'm by nature a hopeful person. I don't say that as a boast but merely as an observation. It's not that I think everything is ideal. Right now I have a terrible time keeping upright when I walk. I'm so likely to topple over that I go out of my way to stay firmly planted in a chair. Just getting up from my desk to go to the bathroom requires a major commitment. Do I really have to go? What used to be routine now involves considerable thought.

There is realistic, look-the-future-in-the-face kind of hope, and there is Pollyannish hope. Mine is strictly the first type, possibly to a fault. I have abandoned hope that medical science will deliver the cure that it's been promising just around the corner ever since my diagnosis.

Hope, for me, is a state of mind, not focused on a particular prospect but rather attached to something more amorphous, less definable. My neurologist, Stephen G. Reich of the University of Maryland medical school, puts it nicely. "Hope," he says, "gets us out of bed in the morning: hope that we'll accomplish something great at work, hope that we'll see our kids do something cute or clever, hope that we won't get into a car crash."  "Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain…”

For me, the routine activities of daily living, like hanging up my pants, are becoming less routine. I can no longer shave with a blade; I'm not ready to die of a slit throat. I used to be able to get in and out of the bathroom in the morning — showered and shaved, with teeth brushed and hair combed — in 15 minutes. Now it takes half an hour.

When I was diagnosed with Parkinson's at 46, Dr. Reich tried to reassure me that life did not end with the diagnosis. I remember blurting out, "Maybe so, but what will I be like when I'm 60?"  Now it's 16 years later, and I'm still a functioning member of society. Will I be able to say the same in another 16 years?
I hope so.