Personal Stories During Parkinson’s Awareness Month

In the late ’90s I was a professional trumpet player specializing in old jazz styles. I played many concerts and festivals with a group known as the “Orphan Newsboys” led by guitarist Marty Grosz. Fans of the band started complaining that I didn’t smile enough. I attributed this to cultural differences between California, where I was frequently playing, and Connecticut, where I’m from. I resolved not to wear a fake smile for all those phony Californians. Complaints continued, and I ignored them.

Lack of facial affect is often an early symptom of Parkinson’s.

Starting about 1999, family and friends noticed that my movements seemed stiff and slow. At about the same time, my personal doctor and also my brother-in-law, an MD specializing in rheumatology, recommended that I see a neurologist. By June of 2000, the diagnosis was clear–Parkinson’s.

At the time, the new wonder drugs for Parkinson’s were the dopamine agonists–Requip and Mirapex. I began my pill-popping career with a half-milligram of Requip four times a day. It was effective in reducing stiffness and slowness, but less so in improving fine coordination in fast, repetitive movements like playing a musical instrument. The prevailing wisdom of the time was that Sinemet (Levadopa), the drug that revolutionized the treatment of Parkinson’s in the ’60s, has a fixed number of years of effectiveness after its first use, and that it probably hastens the death of remaining dopamine-delivery cells. Recent studies cast doubt on both of these propositions.

In about a year most of my work was gone. I started doing music copying work for Saturday Night Live and playing Dixieland jazz dates. I have always enjoyed traditional jazz and I found ways to play it fairly well with limited technique.

Nevertheless my playing continued to deteriorate as I yawned through about five years of Requip. Finally Sinemet seemed like the only viable solution, and the “buzz” about the consequences of its use was less intimidating than they were five years earlier. My playing improved dramatically with Sinemet and Mirapex. Although I’ll never be the trumpeter I was before Parkinson’s, I’m able to enjoy making music tremendously and to maintain the quality of my work at a professional level.

My partner Anne Olin has guided me through programs of exercise for more than 10 years. A former dancer with the New York City Ballet under Balanchine, she takes her classes to the place where movement, rhythm, and music intersect to allow those of us with Parkinson’s to escape some of its rigidity and slowness. She teaches classes in Poughkeepsie and Kingston, NY. In New York City I’ve found great benefit from Olie Westheimer’s Dance for Parkinson’s program at the Mark Morris Dance Center, and William Wade’s Sing for Parkinson’s program, also operated by the Brooklyn Parkinson’s Group at the Mark Morris Dance Center. You probably won’t catch me dancing, but lately I’ve been singing the old songs in public addition to playing them.

Playing the trumpet, singing, and going to dance class make me feel good. I have a more positive outlook and the symptoms of the disease are less apparent.  I wouldn’t recommend a trumpet as a substitute for Levadopa, but I do notice that after an evening of trying to stand up straight, move lots of air through the horn and sing with plenty of air, I’m in pretty good shape. And on alternate Mondays I have Bill Dunham to thank for this–not only for his philanthropic work in Parkinson’s but for his leadership of the Grove Street Stompers at Arthur’s Tavern, on Grove Street in Greenwich Village.

Peter Ecklund

03/25/13

For ten years I had a bunch of subtle and seemingly unrelated symptoms. It was only after I was diagnosed with Parkinson’s disease three years ago that I was able, in hindsight, to put my symptoms together, to know where/why they were coming from. One of the first things I had noticed was that I had been losing, then lost, my sense of smell. I noticed this in particular because my father was a leading food photographer so that in our household tuning into our food, thoroughly tasting it – which requires the sense of smell above all else – was always very important in my life. Next I noticed lack of coordination and dexterity on my left side, when I was cooking. And eventually during many other tasks.

Elizabeth Wynn, 57.