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First person: Fighting an illness with humor and tenacity

By Kathy English
Pittsburg, PA
Wednesday, April 04, 2007
http://www.post-gazette.com/pg/07094/774593-114.stm

I am in a battle to live a full, active life that my body wants to lose. But I am accustomed to succeeding, and that will take determination and a full dose of good humor.

The morning I caught my skirt in the door was a landmark day for me. I slammed the door, the lock engaged, and my skirt was wedged between the door and the jamb. I couldn't dislodge it. I had pulled the car out of the garage and my keys were already in the ignition -- I had been loading the back seat with everything I needed that day. No one else was home.

Frantically, I realized I would have to disrobe in order to get free. I did what I had to do. I grabbed a black trash bag by the door and wrapped it around myself. I sprinted to the car to recover my keys just as the mail truck pulled up. I waved gaily. "It seems you were left wearing the bag," joked the postman.

I found myself more and more in this kind of situation. I would hook my purse on the steering wheel, become entangled in my coat, or trip on an invisible ridge in the sidewalk. My purse strap would catch on the bottom of the purse, turning it upside-down, and everything inside would rush to the floor. The more I attempted to be smooth and cool, the more I appeared frazzled and awkward. For a woman of 50-plus years, a mother of five, and a Ph.D. candidate in musicology, this was unseemly indeed.

Then things became more serious. My right side felt weak and shaky, my foot dragged, and I couldn't write legibly. Even more upsetting, since music is a major part of my life, was when I had more and more difficulty playing the piano and organ.

I had lost both strength and flexibility in my fingers, and finding my way around the keyboard was an onerous task. The sadness I felt drove me to finally seek medical advice. I had a hunch and called a neurologist's office. As I left the house the morning of the appointment, the mailman arrived with my Ph.D. diploma. I was very excited and shook his hand with gusto as he noted with relief that "today, at least," I was appropriately dressed for the weather.

After a cursory exam the doctor quietly asked, "Have you thought you might have Parkinson's?" "Oh no," I whispered, visions of Muhammad Ali in my head. The shock was almost too great to absorb.

I didn't tell anyone outside my family at first, but when the news slipped out, people began holding my arm, taking my packages, helping with my coat, warning me to be careful on the steps, or the ice. Their solicitousness was wonderful, but made me feel as though I had lost my former identity and morphed into Parkinson's itself. Indeed, I greatly appreciate their sentiments, but these are important tasks I must do.

I know that, because I've seen the wonderful results of keeping active.

Exercise has become a critical component of Parkinson's treatment. It greatly enhances both one's physical performance and state of mind. Ideally, one should exercise one to two hours each day, in individual activities -- swimming, golf, or weight training -- or in group sports -- tennis, basketball, or aerobics.

I have also participated in an exercise program through UPMC that is specifically designed for people with Parkinson's. We engaged in cognitive activities, balance exercises, walking backward, juggling, shooting baskets, passing the ball in a circle, etc. (Unfortunately, that program has been suspended for lack of funding.) On my own, I exercise my fingers, playing scales and arpeggios to maintain strength and flexibility. I find new ways to negotiate difficult musical passages and I search for pieces that I can technically manage.

Of course, medication is also integral to the treatment of Parkinson's. It too, only treats the symptoms, not the cause. One of the initial drugs, Mirapex, stimulates the cell's receptors, mimicking the effect of dopamine. To my husband's dismay, we learned that Mirapex can also cause compulsive shopping. Sure enough, when I pass certain stores, it takes all my resolve not to go in. Unfortunately for me, this drug loses its effectiveness after a few years.

My husband, however, is already rooting for the next medication: levadopa, which provides the brain with real dopamine, because its side effects, though daunting, do not involve spending money.

Parkinson's disease begins subtly and moves slowly, steadily attacking the nerve cells in the basal ganglia. As the cells degenerate, the production of dopamine is diminished and the ability of the brain to communicate with the muscles it once governed is lost. It challenges everyday living: It eventually affects all bodily movements -- walking, speaking, eating, swallowing, facial expression.

The physical manifestations of the disease -- lethargy, sluggish movements, impassivity -- mask the heart and spirit of the person inside and create a new outside veneer that impacts how others respond. And, Parkinson's will not go away. In fact, it will worsen, and to date there is no cure.

We have to trick Parkinson's by re-programming our muscles to work as before. We must focus on the movements that have become difficult and practice smoothing them out. We must awaken our neurons by doing things that are not part of everyday motion, like walking backward. It is a new battle every day, for the improvements don't always last the night. The process takes time, planning and concentration. Above all, it requires that we do it ourselves.

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(Kathy English, of Upper St. Clair, is music director and organist at St. Louise de Marillac.)

[EnglishCountryDancer]

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