People with Parkinson’s disease tend to struggle with the movements of daily life. As the disease progresses, even the most mundane tasks can become overwhelming. But when given the opportunity to dance, people with Parkinson’s find that their symptoms fade away. When recounting the experience, they typically express that they’re able to forget about the disease that casts a shadow over their lives. It no longer defines them. There are no longer patients, only dancers.
Dance for Parkinson’s Disease (Dance for PD) emerged in New York City in 2001 as a program of the Mark Morris Dance Group (MMDG). Olie Westheimer, founder and executive director of the Brooklyn Parkinson Group, approached MMDG and proposed the idea of a dance class for her group. MMDG dancers John Heginbotham, David Leventhal and Misty Owens, along with a professional musician, began leading small monthly classes. Since 2003, the composer and pianist William Wade has been the program’s lead musician. The classes are still offered for free in the MMDG’s dance centre in Brooklyn where instructors also receive their training to become certified.
Since its beginnings, Dance for PD has grown into a worldwide program offered in over 300 communities in twenty-five countries. The classes, which follow the flexible structure of the Dance for PD method, address Parkinson’s symptoms related to balance, cognition, motor skills, mental health and confidence. In Canada, the Dance for PD hub is at Canada’s National Ballet School in Toronto. In 2013, they began offering classes in collaboration with MMDG and the charitable organization Dancing with Parkinson’s. Along with Parkinson’s Canada, they have formed the Dance for Parkinson’s Network, which aims to improve access to Parkinson’s dance programs, increase training opportunities and expand across Canada.
Outside of Toronto, there are Dance for PD offerings in cities across the country, including in Vancouver where two Dance for PD instructors are making a difference. Megan Walker Straight, former Merce Cunningham company member and dance instructor at Simon Fraser University’s School for the Contemporary Arts, has been teaching Dance for PD classes in Greater Vancouver since 2015.
In 2017, Leventhal, who is now the Dance for PD program director at MMDG, asked Walker Straight to mentor Venezuelan choreographer Trina Frometa in the Dance for PD method in order to help her get a Canadian visa. After many months of effort, Frometa wasn’t sure if she’d ever make it to Canada.
I sat down with Walker Straight and Frometa to talk about the work they are doing in Vancouver as Dance for PD instructors and the power of dance to alleviate symptoms, inspire joy and provide hope.
Tessa Perkins Deneault How did you first get involved in Dance for PD?
Megan Walker Straight My mother told me about it. A friend of hers in Oregon, where she lives, was attending a Dance for PD class and found it both helpful and fun. Before retiring, my mother was a physician and, at ninety-five, is still confused by my choice to become a dancer and is still suggesting alternative career paths for me! She understands medicine and helping people, not dance. But from my time in New York dancing with Merce Cunningham, she knows of the Mark Morris Dance company and thought this program might interest me. I was immediately drawn to their approach, which is rooted in the arts rather than in the health-care system. And I loved the idea of training in New York, where I have spent so much time, and being able to see my daughter who was then living in Brooklyn. I contacted David Leventhal in 2015 and began the process of learning about this very beautiful work. I was offered a fellowship for training, which they renewed for three consecutive years.
Trina Frometa Initially, people always expect that you have some relation with the condition – a relative or friend that connects you to Parkinson’s, but for me, it was my ticket to freedom. During my last tour with my dance company in Europe, all of my dancers defected in Vienna. At that time, I was being politically active and engaging in political activism through my dance. Because of those two things I was no longer safe in Venezuela. The government cut all my funding, banned me from presenting performances, and they almost made me close my dance school.
I found the Dance for PD program online, and it really interested me because of the connection between dance and improving quality of life. I contacted Leventhal and explained my situation in Venezuela. He knew I was interested but that I couldn’t afford to come to New York to do the training program. The idea of expanding the Dance for PD program to Venezuela was appealing to him, so for humanitarian and social reasons, and also due to my national and international career as a dancer and choreographer, he gave me a full scholarship to the training program. That was my ticket to get out of Venezuela. So I took my backpack with only twenty-five cents in it and I arrived in New York in November 2016. Trump had just been elected.
I tried to stay in the United States and applied for an artistic visa, but I was denied. I had to return to Venezuela, and I started Project Parkinson’s there and taught Dance for PD classes using what I learned in New York. But I had to keep a low profile and use another name because the government was following me.
TPD What was your Project Parkinson’s like in Venezuela?
TF The main pillar is dancing, but now there are also classes in singing, body percussion and tai chi. The project has continued since I left, but the dance classes are on hold until we can find a way to do them by video conference. It’s an impossible dream to think of this happening in Venezuela now because the internet is so terrible. It’s not responsible for me to let someone else run the classes who hasn’t trained in the program and doesn’t know how to teach people with Parkinson’s. Also, to use the Dance for PD name, the teacher has to be trained in that method, but there are no others in Venezuela. The program is growing though because there’s so much need. It’s a pioneer program; there’s nothing like it in Venezuela for the Parkinson’s community.
MWS I noticed, watching a video that Trina sent of her class in Caracas, that the dancers appeared to be struggling more than the dancers in my classes here in Metro Vancouver. It dawned on me that this was due to their inability to access the very necessary medications that people living with Parkinson’s need. In my classes here there is a wide spectrum of symptoms and severity of challenges. I always try to create a sense of community in my classes. There is physical variety but still the uniting common challenge of living with Parkinson’s.
TF That’s really interesting what you’re saying because when you are immersed in it, you don’t see things. It’s very important what you’re saying because the Canadian and American Parkinson’s communities don’t know how much they have. I have seen both scenarios, and Venezuelans who have medication are the lucky ones who have someone sending it to them from outside the country, but it’s whatever they can get and not targeted to their specific manifestation.
TPD How did you two meet each other?
MWS David Levanthal contacted me about being a mentor for Trina in Vancouver in her Dance for Parkinson’s training. She needed a reason to leave Venezuela, and she couldn’t come on a work visa, only a study visa. So I became the identified mentor. Honestly, I wondered if she would ever get here; there were clearly obstacles along the way.
TF There were obstacles at the very beginning. I flew through Los Angeles and I had trouble with the United States immigration. They deported me and I had to go back to Venezuela and buy another ticket again, flying through Bogotá. I finally arrived in Vancouver as a refugee in September 2018. When I arrived, I contacted Megan and we met at a café. Then I went to one of her classes to watch her teaching.
TPD What is it like to teach Dance for PD?
TF One part of it was learning about other cultures and getting to know them. At first, I thought that I had to be like the other teachers I saw in the United States and Canada, but then I realized that it was a much richer experience for the dancers, and also for me, to just be my laughing self, my Venezuelan self, with my rhythms and my music. Then it becomes like an intercultural exchange.
MWS It is an honour to teach these classes. The movement qualities I see are actually very beautiful and inspiring. The dancing is filled with courage and hope and focus and effort. One thing that I’ve discovered is that travelling some distance to offer a class is almost an inevitable part of teaching people with Parkinson’s. It’s different in Brooklyn where there are so many more people living and more people with Parkinson’s potentially living in the neighbourhood. People are also perhaps more accustomed to using public transit there. Here we have to go where the people are and not expect them to come distances to find us.
Classes work best when there is a motivated support system in place. With Parkinson’s, because decline occurs, you need support people around who have an expansive mentality interested in keeping the class growing. When there are enough people in the class, the shared energy helps to bring people more deeply into a place of movement.
I’ve often had students from Simon Fraser University (SFU) involved as volunteers in my Dance for Parkinson’s classes – sometimes for university credit and sometimes not. These are students who are intrigued by the work and interested in exploring different things they can do with their training and their love of dance.
TPD Do the dance classes create a sense of community among the dancers?
MWS Absolutely. When I first started teaching the classes, I knew we needed to have some social time afterwards. In the beginning, I felt that I was responsible for the social time being “successful.” Some people with Parkinson’s are not very verbal or have other physical challenges that typically keep them apart from social situations. I quickly learned that they created their own relationships and their own conversation. I think it’s a very important part of the class.
TF Usually somebody joins them for that part of the class, such as family member or caregiver. It’s needed within their community to do that socializing.
MWS I have taught in places where they don’t provide a means to have the coffee after class – no space or no provision of coffee and tea. We then go down the street to a coffee shop. This concerned me at first: it was a bit of a walk for some; there were stairs to navigate; and the closest café was trendy and busy. But it turned out to be a great experience for all, even for the people in the café who welcomed us, gave up their seats and shared this public space with a group of people who don’t go out to cafés often. And the owners were great. They began putting a big reserved sign on tables thirty minutes before our arrival. The dancers really enjoyed it, and it turned into a special weekly event that touched a broader community. I hadn’t expected that.
TF I get the sense that the dancers are also doing that on their own after class. They’re getting organized and going for coffee on their own.
MWS There was one gentleman who was living in an assisted living facility. He loved coming to dance classes. He took the transit and it would take him two hours to get there. After class he would just stay at the coffee shop for a while with his magazine and enjoy being out there in the world the way he once was. Those kinds of things are unexpected and really great.
TPD Is there a set structure to a Dance for PD class?
MWS What David Leventhal offers in the training program is possibilities – specific possibilities and information. What he doesn’t do, thankfully, is say “This is the way to do this.” He can offer ideas, but I think people who teach this do all kinds of things with it while still working under the umbrella of Dance for PD. He provides a lot of guidance, but there’s no rule that it has to be a certain way.
TF For me, it’s very good that it has a general structure. The other good thing is that, as a teacher, you can have a ballet background or contemporary background or a tap background. So you can use that perspective to inform how you approach and teach your class, which is nice because it’s very wide open to all kinds of dance.
There is a general structure of being seated in a circle first and how a warm-up should go while being seated. Once the class is ready, they stand up and use the barre; that is the second stage of the class. After that, depending on the mobility possibilities of the dancers, they can go across the floor, either walking or doing small phrases of choreography. Then there is a creativity section where the teacher can choose to do improvisation. After that, the dancers return to a circle, only now they are standing. The structure says to do a wrap-up of what happened during the class and then the class ends with the dancers holding hands in the circle bowing to the person beside them and passing that around the circle. In general, I try to follow this structure.
MWS I think sometimes those structures can anchor you as a teacher. I find very often I can be pulled off anchor by the many different presentations of Parkinson’s challenges. I can become distracted from my planned movements – which is a bit disconcerting, but usually my spontaneous choices turn out fine or better. It’s also often necessary for whatever reason; either something is going on in class or something has happened in one of their personal lives that could and should be addressed in movement, and I need to change my intentions midstream. You always have to be flexible as a teacher and adapt to the dancers you have in the studio.
TF You have to have the capacity to adjust and to be creative at the same time in class because not everybody has great mobility. You should be able to include people with walkers, people with irregular mobility and people in wheelchairs in the class, so you never know what the class is going to look like.
MWS I remember once when I was at the BC Parkinson’s Society Conference, and the neurologist speaking emphasized the importance of exercise as a means to manage Parkinson’s. They held a dance class immediately after his talk, and there were about 100 motivated dancers in the circle.
TPD Are there other Dance for Parkinson’s programs in Canada?
MWS The National Ballet of Canada has a big Dance for Parkinson’s program, and they have created an online network of Dance for Parkinson’s teachers throughout Canada. They also partner with David Leventhal’s Dance for Parkinson’s in Brooklyn to offer training programs for teachers.
TPD Has Dance for PD grown in Greater Vancouver or in Canada over the past few years?
MWS David came here a few years ago to do an introductory training workshop for teachers and we held it at SFU. People came from the United States and Canada. No one from this training workshop is teaching in the immediate area that I know of.
MWS I think it just takes time. Even David’s network took time to build up.
TF In the United States, it’s very popular, particularly in New York and in California. But even there it isn’t in every large city.
MWS There are also other exercise programs for people with Parkinson’s here such as Boxing for Parkinson’s. In a place like Brooklyn, there is more exposure to the arts and to dance than in Vancouver, even if you aren’t an artist yourself. I never feel that my classes are oversaturated with participants. I’m always hoping to expand the classes.
TPD Have you noticed an impact on the symptoms of Parkinson’s?
MWS There is a difference over time in their ability within the class. They improve like anyone would with repetition and familiarity. I think it’s very beneficial and I think it allows people to feel more in their bodies again. Participants say dance class helps them. I see a definite difference in mood from being part of something, from laughing and having fun and playfully exploring movement.
Follow Frometa’s work on Instagram >> @proparkynson