A Onetime Presidential Candidate Out-Campaigns a New Foe: Parkinson's Disease
updated 12/14/1981 AT 01:00 AM EST
•originally published 12/14/1981 AT 01:00 AM EST
As a kid of 6, I lost my left eye playing with a rusty knife. I nearly died with spinal meningitis about a year after that, and then for something like 45 years I never saw the inside of a hospital. I memorized the eye chart to get into military service, becoming a captain in the old Army Air Corps in World War II; I've been a licensed pilot for 30 years and have logged 4,000 hours of flight time. I played professional basketball, and I played baseball, football and every other sport. Like most macho men, I could do anything anyone else could do, and I was going to climb a mountain to celebrate my 90th birthday. But I began to have problems in late '75 or early '76—kicking back and forth across the country running for President, you don't know what day it is. I had persistent trouble with my lower back, and my left leg wouldn't quite respond. It wasn't paralyzed, or that painful, but something was wrong.
When the campaign was over I went to a doctor, but he couldn't find anything besides a bad back. Yet I felt something was wrong with my leg and my walk. It wasn't until I went home to run for reelection in my congressional district that I began to really wonder what was slowing me down. In August of '76 we had a film crew over to tape some spots in Tucson. My staff had set up a brown-bag lunch crowd at an outdoor plaza, and I was to walk over a bridge, mingle with the people and answer some so-called spontaneous questions. They gave me the signal to walk across this bridge, and I found myself feeling stiff. I wasn't walking with my old grace, and it went through my mind, "What the heck is this?" And I answered, "It's just a bad back and growing older and those other things I've been worrying about."
Parkinson's has three or four major symptoms. You can have some or all, but the one that nearly everybody has is tremors. When you have the disease very bad, your hands shake all the time. If I wanted to lift a 50-pound log or chin myself, fine. But for precise movements like trying to button a collar button, I didn't have the ability. My hands would quiver. The more intense I got, the more those tremors were there. My penmanship also went to hell. I rationalized that busy people's penmanship, like doctors', all looked like mine.
Another feature nearly everybody with Parkinson's has is what doctors call the "mask." You think your facial muscles are animated—with love or pain or joy or laughter or whatever—but they're not. To others your face is expressionless. Looking back at old pictures from '75 and '76, I can see that developing. People would say, "He doesn't look right. He looks tired. He's been drinking too much." But it was that mask. A lot of my humor wasn't going over because it was all deadpan, even when I didn't want it to be.
Three years later, in the fall of '79, my wife insisted that I have more X-rays taken of my lower back. I finally told the orthopedist who had been seeing me, "There's got to be more than we're seeing here. I've got some further problems." He said, "Let me get our neurologist." The specialist looked at me, asked me a few questions and had me stand up so he could see how much rigidity there was in the muscles. Within five minutes he said, "You've got Parkinson's disease." I said, "What the heck is Parkinson's disease?" I had heard of it but didn't know what it was. Any time they give a disease a name, it rouses all kinds of terrors; if you label a disease No. 462 instead of Parkinson's, Hodgkin's or whatever, no one pays much attention to it. They explained they don't know what causes it and don't have a cure, but that it isn't life-threatening and that they can do a lot to help you. I said, "Doctor, for three years I've been asking people what I've got. How can you diagnose this disease in five minutes?" He said, "Well, the basic symptoms are there, and for somebody who deals with it all the time, it's easy."
Maybe I got the disease at the right time, because 10 or 15 years earlier I would have been sucked up in the tremendous enthusiasm for L-dopa, a drug that replaces a chemical produced at the base of the brain to regulate nerves and fine movements. In Parkinson's disease, the brain stops making this chemical, called dopamine. When L-dopa came along, there were incredible stories of disabled victims getting out of wheelchairs. They could actually play baseball and run within a week. But after a few years they discovered this magical L-dopa is a little bit like heroin—the longer you use it, the more it takes to get the desired effect. Pretty soon patients were taking a whole bucket of the stuff a day just to maintain the same benefit. Then the side effects got bad, so they had to quit.
There are a half-dozen drugs in use now. Dr. Thomas Chase, head of the Parkinson's section at the National Institutes of Health, first put me on Artane, the mildest drug, and after a few months he added Sinemet. This is an improved form of L-dopa, with a time release; the drug's effect isn't over in 10 minutes but is spread out. Everybody has remarked on how different my face is, that it doesn't have that sag. My life expectancy is as good as anybody else's at my age, and I can now do a collar button just fine. If I exercise and fight this thing, which I do, there's no indication that I'll ever need any additional medication.
My advice to people who are diagnosed as having Parkinson's is to get the best treatment they can and just refuse to consider themseves crippled. Don't submit to it. Running, for instance, is important to me. I run every day. Sometimes with Parkinson's your balance and depth perception are not all that good, so doctors want you to practice standing on your toes and doing leg lifts. I play paddleball occasionally. I like to garden, which I consider a form of exercise, I often play golf and I do a lot of walking in Congress—I figure about four miles on a busy day.
The doctor told me something that I think applies to all of us. If you've got a skill, don't let it get away from you. The minute you say your arm shakes so severely you can't play golf, or whatever, you're quitting, and the disease will overtake you. That's been part of my philosophy all my life. Another thing is humor. Hell, kids are cruel. I was a little boy with a glass eye in a small town—they poked fun at me. That had something to do with developing my own sense of humor. If you kid yourself, you'll beat others to the punch.
I think the attitude that's carried me along with this artificial eye all these years spills over into my attitude about Parkinson's. I don't feel sorry for myself, because I've been to the top of the mountain—I had the great adventure of a presidential campaign in 1976. And when I look around I see a lot of other people with problems a lot worse than mine.