Hello. My name is Pamela Quinn. I am not a doctor, a researcher or a scientist. But I know a lot about movement – I danced professionally for 20 years – and a lot about Parkinson’s – I’ve had it for over 15 years – and I thought it might be of some interest to tell you a little about my experience.

When I was first diagnosed with Parkinson’s, I was actually relieved. I had known something was wrong for some time, and now I had a name to put to it. I knew that I could research the disease and understand how it was likely to affect my life. The doctors that had delivered this news also inspired my confidence. They seemed thorough and knowledgeable, and with their descriptions of recent advances in brain research, even rather upbeat about the whole thing. Although “You have Parkinson’s Disease” is not a sentence I ever wanted to hear, at least I now had a sense that I had some degree of control over the situation.

But there was one major problem. The treatment the doctors had outlined for this movement disorder was entirely pharmaceutical. It was curiously lacking in any therapy that actually dealt with movement in a physical way.

Now, as someone who had spent her childhood competing in sports and her entire adult life as a movement professional, I was particularly sensitive to this omission. How could a doctor tell me I had a disease whose symptoms were expressed through movement but have nothing to say about movement therapy? Had I missed something? After the news sunk in, I was left with the question “Who will help me with my movement?”

As it turned out, the answer was close at hand. After a period of adjustment, I realized that my long experience in working with my body made me the ideal candidate to treat myself. For those symptoms that the medications did not treat, or treated incompletely, I believed that I could find ways to stop or diminish them. And so I became my own movement therapist. Using my own kinesthetic sense, I devised ways to make my sluggish arms swing, to make my awkward stride even, to halt my festination, to get through doorways gracefully.

This was both a revelation and my personal deliverance. Not only have I been able to create a repertoire of strategies to deal with my own symptoms, I have now been working with other Parkinson’s patients for many years, helping them to find as many ways as possible to alleviate, decrease, or circumvent the out of kilter malfunctions this disease produces.

It is clear to me that the more I can reinforce normal movement patterns, the better off I and my fellow patients will be. To that end, I use anything that will help. I rely on the basics of my dance training to maintain flexibility and balance and to combat the overarching tendency in Parkinson’s for the body to contract. I experiment with a wide array of practical tactics to deal with tremor, rigidity, slowed motion, impaired posture or loss of facial animation. I know how to help someone with dyskinesia keep their head still so that the dentist may treat them. I know how to help someone swivel in his car seat or her office chair with ease and efficiency; I know how to help you quell an internal tremor – the one you feel but people can’t see.

My now years-long experience has confirmed my original response to my situation. My doctors are highly skilled, but their training did not provide them with the tools to treat me in a complete way. It is overwhelmingly clear to me that treatment must have two dimensions. Drugs are essential, but not sufficient. They must be complimented by regular and persistent work with the body.

Since my isolated and searching beginning with Parkinson’s, I have met some wonderfully skilled physical and occupational therapists who are working in the treatment trenches. And I have met a widening array of practitioners like myself who come not from medical training but from a variety of physical and artistic backgrounds who recognize the effectiveness of their own skills in dealing with Parkinson’s symptoms. My hope is that their number increases a thousand fold so that newly diagnosed patients are not left with the same quandary as I was in. I do believe that the medical field as a whole is more aware of the need for physical as well as medicinal treatment. I hope this awareness will continue to grow. And to the insights of physical and occupational therapy, I hope the field will add the benefits of many different approaches. The tools that my discipline, dance, has to offer are not yet fully accepted by the scientific community, but they are tangible and concrete. Until we have a cure for this disease, I think it vital that we use whatever means are at our disposal to treat it. My wish is to promote a spirit of inclusion and improvisation in this effort.

Two last thoughts: One tool that has helped me immensely is the integration of music into my treatment. Coming from the dance world, this was not a surprise to me. But the degree to which music can aid in the amelioration of symptoms was something even I did not appreciate. Music evens out my gait, unlocks me from freezing, helps lengthen my stride, and returns me to a kind of motor fluidity I might never otherwise have. I think there is immense therapeutic potential in music that might be the subject of another talk. I hope research continues to grow on this topic.

I hope too that research continues on all varieties of exercise in relation to Parkinson’s. But – and this is my final thought – not at the expense of implementing programs that we already know can be of help. As a patient, what I see a need for is wellness centers that offer patients a variety of therapeutic physical activities. These should be incorporated into neurology programs and offer affordable classes with teachers trained specifically for PD, transportation to help get patients to the centers and ways to motivate people. That’s where the resources need to go. Research is necessary. But it’s the access and availability of care that we as patients most urgently need.

So, back to the beginning. After I was diagnosed, I began to refer to myself as a former professional dancer. But a friend of mine said,’ Wait, you’re still a dancer – you know in your bones what dance is; Parkinson’s can’t undo that; scratch the word ‘former’ – you’re still a dancer.” Well, aside from some rather obvious limitations that I now must function under, my friend was right. I am profoundly grateful for my life as a dancer. In real ways it has been my salvation. It taught me about the body’s resilience, even in the face of this dreadful movement disorder. My life as a patient would have been utterly different without the understanding of my body dance gave to me. My fondest hope is for others to gain some of that understanding, by whatever means.

I’d like to end by directing you to a video I made. It is a movement piece, and a speaking piece and it was co-winner of the video competition at the second World Parkinson’s Congress. It’s three minutes, and it’s called, “Welcome to Our World.” I hope it speaks to you.