American Parkinson Disease Association, Washington Chapter

Joseph Brooks Mackey, MD, Board Member of the Washington State Chapter of APDA

I have learned over the past several years that Parkinson's disease is one that prompts many patients to utter the question over and over, "What is wrong with me now? Why can't I perform that simple task I've always done so easily before?" I gained this insight not as a physician, but as a victim of PD myself. The following is a brief description of my experience.

The first symptom I concerned my penmanship. It was rapidly going south. Doctors are notorious for having illegible handwriting, but as an anesthesiologist I tried to keep my written records neat so that others could later understand them. Next came a slight tremor in my right hand. I slowly became aware that something other than my morning coffee was causing me to scribble and to write with smaller script. But I buried the thought under a layer of denial. My mother had suffered from a familial tremor that forced her to scribe her cursive letters very carefully, an impossible task in her later years. That's it, I thought. Quit the coffee, something her Swedish blood never would have allowed her to do, and I'll be back to normal.

No such luck. I went to see a neurologist to whom I told my story. He immediately had me walk down the hall and back. When is this Doc going to examine my symptoms, I asked myself. Before I could sit down, he said calmly, "I think you have Parkinson's disease." Stunned, I groped for a reply. Why me? This can't be the diagnosis. What about the familial tremor? I'll take that one.

I had administered anesthesia to a few Parkinson's patients during my career, but their disease was rather mild and their course was smooth. Nevertheless, the very mention of PD brought forth vivid recall of those poor, elderly patients who bravely volunteered to be presented in an auditorium filled with medical students eager to learn about a devastating disease for which there was no cure. My first impressions were all too clear in my memory. This was the "Mother of all Diseases." Piling on more denial, I rationalized that, of course, those patients chosen by the medical faculty had to be the worst cases they could find, no doubt long term residents of the Veteran's Hospital who manifested the most severe symptoms ever recorded.

When I first learned that PD was to be forever mine, I tried hard to hide the fact from my medical colleagues and from my friends. Finally, one day in the operating room I was experiencing difficulty starting an intravenous on a female patient. She looked up at me bending assiduously over her arm and then said, "I don't know who is shaking more, me or you!" That did it. I told my colleagues what my problem was and retired from active practice that very day.

Now I have lived with my PD for over ten years. My views have changed after meeting many people with PD. I have seen a broad spectrum of symptoms in people both young and old. Gradually I developed these symptoms: micrographia, bradykinesia, difficulty swallowing, loss of my sense of smell, early morning insomnia, tremor of my right hand and of my jaw, difficulty balancing on my right side, easy fatigability, stiff muscles in the morning or after sitting for a prolonged time such as in an airplane or movie theater.

A young man named Gene Fair, whom I met years ago, was instrumental in changing my attitude. He helped me cope with being a Parkinsonian. Gene was only 30 years old when he was diagnosed. I was 48. (What did I have to complain about?)

Two key elements we both had in common seemed to work not only in making living with PD a little easier but also in slowing its progression. First thing Gene learned and then advocated was to "get out of the wheelchair." I should begin or continue to adhere to some form of exercise that will develop and maintain fitness. He became an avid runner. I could do that, I whispered to myself. And I did. I also kept up alpine skiing, water skiing, weight lifting, cycling, and basketball. I just this week began coaching a second grade girls basketball team, a new pastime for this guy.

Over the past few years I have continued to do things I especially love in spite of my PD. Things like tree and woodcutting with a chain saw, mountain climbing (Mt Baker and Mt Rainier six years ago and an attempt at Mt Olympus last September, rained out after 40 miles of backpacking), horseback riding, elk hunting, and, horror of horrors, motorcycling. All of these physical endeavors take courage and commitment, especially in my case, my being an average athlete; but they all seem to help me stay fit. What is more, when I am doing them, I feel more "normal" than at any other time.

The second thing Gene taught me was to maintain a sense of humor. This has served me well in keeping a good attitude with PD. When Gene and I talk on the phone, we make each other laugh like mad. He even made Muhammad Ali laugh when he told the Greatest on Earth, "you call me your friend only because I'm the only one you know who shakes more than you do!" Another time he quipped to the sportscaster, Tony Ventrella, "I can get Ketchup out of a bottle faster than anyone." When I opened my pill container to take my meds, Gene peered over my shoulder saying, "what ya got there Bud? We Parkies love to check up on what others are taking." Another time he slew me with this one. "Now I hear that they are doing implants using pig tissue. If I had such an operation, could I then be said to have Porkinson's disease?"

That is my story. I wish like the dickens I did not have PD, but I continue to believe that it is within my power to keep my guard up, fight off laziness, and above all else, when I feel something troubling me to do as the old philosopher said, "Keep your head up high, take a walk in the sun, and never give up, never give up, never give up, that ship."