Dancing with Parkinson's in Practice, Symposium round-up

Last week, with an international audience of over 75 guests, I was delighted to host and present the first Dancing with Parkinson’s in Practice symposium in collaboration with the National Hospital for Neurology and Neurosurgery (NHNN) and Institute for Neurology.

The symposium was opened by colleague and friend David Leventhal, Founding teacher and Director of Dance for PD, who generously shared his thoughts on the practice of telling stories - we have to honour the real stories and find ways to share them… This set the tone for the evening and the values of our programme, which champions the voices of people with Parkinson’s and puts their stories at the centre of the practice.

Stories need telling, for which you need language, and words only go so far – most of life takes place well beyond the reach of words. Words can convey inner states, but they are always about things, they are not the thing itself - all this evening’s talk about dance is not actual dance. For me, the value in dance class is learning an expressive art - a creative language for both Body and Being, good for exploring and expressing things deeper than words
— Leslie Mapp (dancer with Parkinson’s)

The evening followed with presentations from Danielle Teale, artistic initiator of Dancing with Parkinson’s, and Ben Beare, research Physiotherapist and collaborator for the National Hospital for Neurology and Neurosurgery programme. Teale and Beare have been working together on a pilot research for the programme, and the presentation was an honest insight into the challenges of researching dance, and the pitfalls of data capture measures. Teale and Beare are continuing their research partnership and exploring new approaches in the continued programme from May 2019.

The main event of the evening was an opportunity to hear from our expert panel of dancers with Parkinson’s. Chaired by Alison Williams, who sits on the Dance for Parkinson’s Partnership UK Steering Group, and is a dancer with Scottish Ballet’s Dance for Parkinson’s Programme in Edinburgh.

For me, although the studio space is wonderful and full of light, the emotional and spiritual space of the class is equally important. The teachers create it, and our volunteers support it, and the dancers co-create it as well.
— Alison Williams (dancer with Parkinson's)
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Dancer Leslie Mapp who is a long standing member of Danielle Teale Dance, Dancing with Parkinson’s in Hackney at St. Joseph’s Hospice, gave a moving speech about the power of dancing and a true insight into the experience of a dancer with Parkinson’s. You can read an abridged version of this on the blog from a previous entry: Swan Song

As the disease progresses, you do learn new words - from medicine, from psychology, from statistics - but none successfully conveys the profound depths of the experience. It’s inexpressible in words, it needs speaking not just speaking about. Which is why the particular combination of music, choreography and infectious enthusiasm that Danielle brings to her classes is so rewarding.

Not only does it provide me with physical exercise for the movement disorder, it also provides me with a language for directly expressing my new persona as a person with Parkinson’s. And I’m learning the best way, immersed in company with native speakers. Everyone in the class is fluent in either Parkinson’s or dance, and we’re all learning from each other. Sure, I’d get the same physical workout from the gym, but most probably in an atmosphere of conflict and competition – refuse those limitations, fight that disease. Now that Parkinson’s and I are inseparable, I prefer the gentler language that dance speaks, one of working together, of exploring and expressing just who I am right now - in a language of collaboration, imagination, self.
— Leslie Mapp (dancer with Parkinson's)

Then the remaining panel, dancers Anne Prest, Steve Harris and Angie Heathfield, were invited to speak about their experiences - why dance, what keeps you coming, does the space affect your experience, what is important to you about leadership… all these questions opened a valuable dialogue between audience and dancers about their experience and what we can learn from them.

The Dancing with Parkinson’s programme at National Hospital for Neurology continues in May 2019 with regular classes and research taking place, funded by the National Brain Appeal. Keep in touch with us for more information and sign up to our newsletter for regular updates.