I’ve been teaching Dance for PD® since 2007 and integrating dancers with Parkinson’s disease into my choreography since 2009. This journey began when Herb Heinz, a very good friend, divulged that he had Parkinson’s. Little did I know that his friendship was the first of many to blossom into a strong, creative and inspirational bond that would affect many people.
David Leventhal of the Mark Morris Dance Group and program director of Dance for PD® helped to develop the first program outside of Brooklyn, New York in the Oakland, California studio that I direct called Danspace. David’s tireless and generous work is commendable and one to emulate in this sector of our field. It is remarkable that we have been able to sustain free weekly classes on Thursday mornings for 10 years!
Last year, my company, dNaga, had the great honor of performing at the World Parkinson’s Congress in Portland, Oregon. It was at the Congress that I shared some of the things that I have learned about Parkinson’s disease with the other Congress participants including the neurologists and scientists in attendance. As a choreographer, I never would have predicted that I’d have information to share with such a group, and I was continually astounded by people’s surprise when they heard the information in my recorded interviews.
Part of my artistic process has been to interview people with Parkinson’s, take poignant and controversial sound bites into the studio, choreograph, discuss and create work. With my intergenerational company, we perform to a live sound score that blends the interviews with music composed by Joel Davel. In the early part of my process, I sought to learn more about Parkinson’s. My questions were thematically based on how one finds out they have the disease; what are its symptoms; how do people grapple with sharing the information with family members, friends, and colleagues at work; and how does one’s identity begins to shift with this new information. I was surprised at the number of people who were misdiagnosed, had symptoms for years before being diagnosed with Parkinson’s, and those who hid their diagnosis. This led to understanding that symptoms vary greatly and that they manifest very differently in each person. For example, a tremor may not necessarily be a dominant symptom. It became clear that Parkinson’s was challenging to diagnose by a general practitioner and that it is very important that people with PD assemble a team of supporters including a primary care doctor that they trust, a nutritionist, a physical therapist, social worker as well as a neurologist who is a movement specialist.
When people with PD begin to present physical symptoms, it is common to become ashamed, isolated and sometimes to experience depression. Dance for PD® addresses these issues by teaching the tools that dancers practice in the studio. These tools include working together within an ensemble. We practice kinesthetic responses to one another and proprioceptive skills as we work at the barre, travel across the floor or work in groups. We use imagery, improvisation and play as ways to build and remember movement. We often work rhythmically with music to motivate phrases and enhance the relationships between the dancers while executing a series of creative tasks.
Conversations with my students and choreography projects led me to Brooklyn and the Mark Morris Dance Center in 2012 where I had the opportunity to compare interviews with East Coast participants. I found that Parkinson’s is Parkinson’s and that people East and West were grappling with the same issues. I had the great honor of choreographing a work in Brooklyn and being part of Dave Iverson’s film, Capturing Grace, that followed the rehearsal and production of a performance by members of the PD community.
While in Brooklyn, I started the next phase of my interviewing process around the theme of medication. I found that most everyone was prescribed the same set of drugs but it was clear that everyone was managing the drugs differently. For most, the drugs were very effective at the beginning. Over time, they were less effective and other drugs were added to deal with other symptoms. Some drugs have evident side effects. For example, if one takes too high a dose of drugs to battle rigidity, then dyskinesia is actually a result of the medication and not a symptom of Parkinson’s. Pamela Quinn, one of the original ODC/SF dancers who leads a movement laboratory in Brooklyn for people with Parkinson’s described how she manages her PD medication: “I’m not pro-medicine, I’m not anti-medicine, I’m all for finding and tweaking the right cocktail for you, so that you can get the most functioning from the lowest dosage.” This is particularly helpful information for people who are just finding out that they have PD. It such an overwhelming disease that sometimes the initial shock prevents people from asking questions or knowing what questions they should be asking. I found that some people with PD are from the generation of not questioning one’s doctor. Despite feeling like they were taking too much medication, they decided to tough it out over the next few months until they had an appointment with their doctor. I realized that in order to inspire people with PD to take charge of their own dosages they were going to have to hear it from the doctors themselves.
This led me to interviewing neurologists and neurosurgeons to discuss fears articulated by interviewees and to get advice. At the same time, I began to collect advice from people with Parkinson’s for doctors and scientists to provide a dialogue through my dances. I also began to research the benefits and dangers of Deep Brain Stimulation surgery. Through recent discoveries, rogue proteins called alpha-synucleans have been discovered to be clumping together and may be the cause of Parkinson’s disease, Alzheimer’s and Huntington’s disease. We are at a very exciting time for science and are hopeful that a cure is on the horizon.
Besides the many benefits of dance, our Dance for PD® classes provide a forum for the dancers to share their experience and wisdom with each other. For example, I have often heard our dancers impart to the more newly diagnosed that they shouldn’t take their meds close to when they eat protein-rich foods because the two compete with each other in the bloodstream allowing just one to be absorbed. Deep friendships form and a beautiful sense of community blossoms in our classes.
This work has enriched my life and those in my company tremendously. I’ve learned that we need to allow others to help. I’ve learned that it is important to be gentle and compassionate with oneself and that the inner critic must be tamed. I’ve learned that it takes great bravery and effort to overcome fear of limitations and it is imperative to find people to play, laugh and move with to live a life of fulfillment. The dance studio is where we can grapple with reality, have space to honor anger and grief, invite joy and play and to experience power while being part of an ensemble. It’s where we engage in the practice of transforming ourselves and our subjects into dances.