Moving Through Parkinson's

Pamela Quinn danced professionally for about 20 years in both San Francisco and New York City before she was diagnosed with Parkinson’s disease. She has combined her dance background with her personal experience of Parkinson’s to work with others coping with the condition. She has two children, lives in Manhattan with her husband Michael O’Connor, and is a soccer mom. Here she describes her 12-year journey as a dancer with a serious movement disorder.

I was reading the newspaper and it started to flutter, as if moved by a small breeze. But the window wasn’t open and the fan wasn’t on. Strange, I thought, as I traced the origin of the movement to my left hand. I watched the hand carefully, without emotion, as it quivered ever so slightly. Had I not been holding the paper, I would not have noticed it at all.

That was the first sign of my Parkinson’s disease, which I was diagnosed with two years later at the age of 42. From this small, almost imperceptible beginning, my symptoms grew to where it was difficult to walk across the room without lurching violently from one piece of furniture to the next, grabbing each to stabilize myself.

For anyone, learning that you have a serious illness is a shock. But for a dancer, having a condition that directly affects your ability to move is profoundly shattering. I began dancing when I was in high school. For most of my adolescence and all of my adult life, my world had been centered on class, rehearsal, performance, and teaching. I had been an associate director of ODC/San Francisco for roughly 10 years and collaborated with actor/writer Michael O’Connor on dance and theater works in New York for another 10.

What lay ahead of me now? Who was I to become? How would I earn my living? I was also a mother and I worried about how I would be able to raise my son. Would I be able to play with him, or even to take care of him physically? In my darkest fantasies I envisioned wheelchairs and nursing homes and physical limitations so severe I would be completely immobilized.

While my symptoms were still mild enough, I tried to hide them. When my left hand trembled, I held it with my right behind my back or crossed my arms in front. If I had to walk with another person I exerted enormous effort to step as evenly as I could, and if they noticed something amiss I excused it as a pulled muscle or sprained ankle. But Parkinson’s is a progressive disorder and as time went on it became difficult to mask its effects. I retreated from the dance world, knowing that dancers would be the first to pick up on a movement disorder. I stopped going to class, stopped seeing concerts, and stopped choreographing on other dancers.

This was a period of mourning. At the same time, it was a period of feverish questioning and searching for help. I saw the best neurologist I could find. I saw a nutritionist, an acupuncturist and herbalist, and a movement therapist specializing in Parkinson’s—Martha Partridge, masterful practitioner of Trager (see “Mind Your Body,” Sept. ). At a certain point, I realized I had also been seeing another specialist: myself. Over time I had as a matter of course (as any dancer worth her salt would) been making adaptations, experimenting with ways to alleviate or circumvent my symptoms. If my left hand was in tremor, I learned to calm it by shaking it vigorously. If my left foot dragged, I practiced kicking a soccer ball in a string bag to help it come forward. If my left arm didn’t want to move in a full range of motion, I swung my purse from arm to arm to wake it up.

Eventually I recognized that in addition to the medications I was taking (which are essential), the greatest resource I had was the understanding of the body that my life in dance had given me. Those of us who spend our lives working with the body are learning how to speak to the body: how to question it, coax it, finesse it, scold it, trick it if necessary—like a child for whom we have the utmost tenderness but whom we sometimes must guide. In a crisis of disease, this understanding has the potential to affect the course of our condition.

As this realization gradually crystallized, I began to think of how I might share some of what I had discovered with other Parkinson’s patients. I did this with some misgivings at first. Would it be depressing to surround myself with the disease? Could I handle seeing what I might become? But my neurologist (the wonderful Rachel Saunders-Pullman) assured me that, relative to the time I had had the disease, my condition was exceptional. Also I was convinced that movement played a significant role in how my PD had progressed—or, rather, the degree to which its progress had been slowed.

After assorted attempts to find a forum to present my ideas, I learned of a dance class at the Mark Morris Dance Center in Brooklyn specifically for people with PD. (More than one person can have a good idea.) The woman who had initiated the class was Olie Westheimer, an inspiring advocate for arts-based therapy and founder of the Brooklyn Parkinson’s Group. She was happy to meet another like-minded soul, and I suggested developing a sort of movement laboratory. It would be a place to experiment with movement ideas, a class for those struggling with Parkinson’s to challenge themselves and, not incidentally, to have fun doing it. She was game, and I began to put together a warm-up, postural exercises, a mini aerobics section, and movement problems related to PD symptoms, along with several cooperative games.

Contrary to my fears, I found the experience of working with other Parkinson’s patients beautifully invigorating. The people who come have a wide range of conditions, from relatively functional to those who struggle mightily to take a step in an upright position. But it is enormously moving to see each individual confront their limitations and search their way through or around or over them. I sense the pleasure in the room when we move to the rhythm of our percussionist (the stellar Tigger Benford), and the delight in the giddy tension our ball-throwing games create.

Parkinson’s disease is horrible and very frustrating. I do not wish it on anyone. That said, something deeply satisfying has also come from it. Were I never to have had this challenge, I would never have had the opportunity to understand the ways in which my training and experience fortified me for it, and I would never be communicating my own discoveries about the resilience of our capacities for movement to others. In that respect, my understanding of movement, of the dynamic use of the muscles particular to dance, is deeper now. My disease took dance from me, but in another way gave it back. For that I will, with a rueful shake of my head and the sound of that rattling paper in my mind, give thanks. I’m dancing still.