I’m of the 50s/60s in-between generation, brought up on rock ‘n’ roll - early Elvis, Bill Haley & His Comets (I came second in a Twist competition) - and West Side Story; also raised on Strip the Willow (hair pins flying like shrapnel), a liberal dose of Swan Lake and some ballroom dancing. And, being a tall girl in a single-sex school, all danced as the man. Well prepared for Parkinson’s Dance.
Music, I find, cues my feet, creates the bridges between my brain and my limbs, recalibrates my skewed proprioception, restores my balance, my fluidity of movement and grace. In a Q&A with David Leventhal (Dance for PD®), in Edinburgh, I asked, “Why don’t you talk about how the Parkinson’s Dance movements counteract the physical effects of the condition?” “Absolutely NOT,” he said. “For this hour and a half you are a Dancer, not a person with Parkinson’s.”
Words cast spells: I am a Dancer. I park the unwanted visitor at the door and dance, and feel lovely.
The dance class colours my everyday life: walking over Embankment Bridge I heard myself shuffling. Through my mind came my Parkinson’s Dance teacher’s words “Channel your Inner Flamenco
!” I stopped, struck a pose, then strode on. Learning from the Sun Salutation, I use my breath to adjust my posture; I get up and down from chairs mindfully, and my timing is now spot on – the Strip the Willow I danced last year was bang on the beat, fast and furious.
Returning to the class after three weeks at the World Parkinson’s Congress 2016 the feeling of community and warmth was amazing. This is my tribe, these are my people.
Given this, I was appalled to hear an eminent movement professor say, “There is no research-based evidence that Parkinson’s Dance improves Quality of Life.” I asked what measure the research had used; it was the PDQ39, the validated gold-standard of Parkinson’s QoL (Quality of Life) measurement, developed in consultation with people with Parkinson’s.
I looked it up. It measures ‘difficulty’, ‘problems’, ‘issues’. It asks me what I cannot, can no longer, do. It suggests to me the frustrations and miseries that necessarily go with living with this condition. It tells me that I can expect emotional, mental, cognitive, physical, social problems. It assumes that my QoL is dependent on how well I can function. It isn’t the only measure, but it’s the most validated and universal. What we value, we measure; what we measure, we value. The PDQ39 measures diminishment.
Words cast spells:
Where were the questions about what I understand, at the sharp end, by quality of life – laughter, feeling lovely, a sense of community, of joy? Where was the question measuring the trust that enables me to joke with other people with Parkinson’s about the indignities of incontinence? The poet and activist Robin Morgan says, “I am not diminished by my Parkinson’s, I am distilled by it; and I very much like the woman I am distilling into.” Let’s measure distillation, and Dance, and community.
Words cast spells.
12 April 2017