Living Her Best Lifeby Beth Howard Patient Expert
Pamela Quinn was reading the newspaper one day and noticed that it was fluttering a little. First she looked to see if the window was open and then traced the movement back to her hand, which was shaking slightly. “I thought, ‘Wow. That’s weird,’” she says.
Soon the 42-year-old professional dancer in New York City began having problems walking.
Now 63, Quinn would eventually learn that she was experiencing the beginning of Parkinson’s disease. While the news was devastating, it also brought relief. “I knew something was really wrong, but I had no idea what it was,” she says. “Being diagnosed was frightening, but it was at least something that I could read about and figure out how I was going to handle.”
At first Quinn was reluctant to discuss her diagnosis with others and she tried to hide it and her symptoms. “I had to have time to process it myself before I let other people in on it,” she says. “Those early years were very difficult because I was very alone with this diagnosis.”
Quinn also stopped going to dance class and performing. “I thought ‘I’m the best I’ll ever be and I’ll just decline from here,’” she says. “I retreated from my world, which defined me both in terms of who I was and what I did. I had to figure out what I was going to do. Who would want a dancer with Parkinson’s?”
Coming to grips
In her effort to hide the disease, Quinn began to use the analytical skills that her dance training had provided. “How can I make my walk normal?” she wondered. “What can I do to take my limp away? How can I make my arms swing?” She ended up developing a toolkit of coping strategies.
Ultimately, the stress of hiding her illness became counterproductive, Quinn says, and she decided to go public with her diagnosis. She began to think about sharing her ideas for managing Parkinson’s symptoms. “I’ve developed these techniques,” she thought. “They work for me. I wonder if they’ll work for other people?”
She began to investigate the possibility of teaching other people with Parkinson’s. That led her to become part of a community of people with the disease, which she found very useful emotionally and psychologically because she became connected to others with the same plight, challenges, and questions.
Thinking about meds
At first Quinn shied away from taking medication for Parkinson’s disease. “I put it off for as long as I possibly could,” she says. The reason she put it off, and the reason most people put it off, is that with medication use over time people develop dyskinesia, which is what causes Michael J. Fox’s writhing movements. The idea in delaying taking medication, she adds, “is that you’re elongating the time period before which you’ll become dyskinetic. But the problem with that is that exercise is the only preventive measure we have—and you need to be medicated in order to move. It’s sort of a catch-22.”
Quinn now takes several Parkinson’s disease medications, with the prescriptions and dosages varying over time. In retrospect, she wishes she had started taking medication when her first son, who was three years old at the time of her diagnosis, was growing up. “I didn’t want to embarrass my kid by not being able to move or by looking weird, so I wouldn’t go on school field trips,”she recalls. “I wish I could have been a more active parent.”
Moving and teaching
Quinn’s primary approach to treatment is exercise, dancing, and walking. “At the time I was diagnosed, there was very little knowledge about the benefits of exercise,” she says. “In fact, I was told not to move, because my doctors were afraid I would fall and break a hip. I knew that was wrong. As a dancer I knew that movement was essential.”
Music has been important too. “One of the things I discovered was that music was a fabulous facilitator of movement,” she says. “I wouldn’t be able to walk, and I’d turn on some music and I’d have no problem. Music is definitely one of my ‘drugs.’ It is as important as the medications I take, with none of the side effects. It still plays a role for me today.”
Teaching has also made an enormous difference in Quinn’s life and her outlook. Her class for people with Parkinson’s (pdmovementlab.com) offers dance-oriented movement combined with functional training, such as learning how to get up out of a chair, sit back down, walk across the floor, and open doors without compromising balance.
“I didn’t realize at first that my own state of mind was really affected by helping others,” Quinn says. “That gives me total pleasure and a sense of being able to contribute something to the world. Parkinson’s is a disease that takes away. It continually robs you of your faculties. To be able to make something, or do something, or be of value is an essential part of mental and physical health. Teaching gave me a purpose.”
Her advice to other people with Parkinson’s? “Live your life. Don’t give up what you love to do. Just figure out how to adapt,” she says. “I like to play tennis, and I once broke my wrist horribly,” she continues. “People said, ‘Oh, well that’s the end of tennis.’ And I said, ‘No, it’s not. It’s the end of me running backwards and trying to get a ball and taking chances like I did before, but it doesn’t mean I have to give up tennis.’”
For the newly diagnosed, Quinn adds, “You need to know that your life is not over. You can live a really fabulous, meaningful, and long life. The disease is really quite manageable for many years.”