With Parkinson’s Awareness Week (10-16 April) coming up, Lisa Botwright learns more about a project that offers sufferers a rather surprising way to deal with some of the most distressing symptoms of this debilitating motor disease…
The woman who opens the door to me and ushers me through to the living room of her Loudwater home is elegant and beautifully spoken. It’s only when she offers to make tea that I notice her lilting gait as she walks to the kitchen; later, I spot a tremor in her hands as she passes me my drink.
Val Kleanthous, 76, was diagnosed with Parkinson’s in 2002, but believes she has been experiencing symptoms since her mid-40s. “I’m lucky,” she tells me more than once during our conversation. “I could be a lot worse.”
Parkinson’s is caused by a lack of the chemical dopamine, which in turn causes specific nerve cells inside the brain to die. As dopamine decreases, people find that their movements become slower, so it takes longer to do things. This can make everyday activities, such as eating, getting dressed and using a phone or computer, difficult or frustrating.
“Often the symptoms that others see are just the tip of the iceberg,” Val explains. Freezing (a sudden, brief inability to start or continue movement), and then falling, is one of the illness’s most distressing manifestations. Recently, Val was waiting to catch a train, and then froze as it arrived, which meant that she was physically unable to board. “There is an inability to be what one used to be,” she reflects. “Attitude of mind is important.”
Val’s attitude of mind is pretty dauntless. She has invited me to her home, along with dance teacher Julia Pearce, to tell me about a special movement class they’ve set up together, part of the international ‘Dance for Parkinson’s’ project. They’re keen to promote its proven benefits in empowering class-goers with the physical strength and mental resilience to fight back against the degenerative aspects of the disease. “Dancing makes me feel alive; it makes me feel well again,” Val enthuses.
My host was inspired to launch Dance for Parkinson’s (DfP) in the local area after a chance meeting with an American woman, when she was on holiday with her sister in the Grand Canyon. (A walking holiday?, I clarify, impressed by another example of Val’s refusal to allow her illness to define her.) She was relaxing by the pool one afternoon, when she was approached by a fellow guest, who said to her, “I see you have a motor disability… have you heard of Dance for Parkinson’s?”
This was a pioneering idea that was slowly taking root. Sixteen years previously, the Brooklyn Parkinson Group (BPG) had approached the Mark Morris Dance Group (MMDG), an internationally-acclaimed modern dance company, to propose the idea of a rigorous, creative dance class for members of BPG. Founder Olie Wertheimer knew from her own dance background that professional dancers train their minds and bodies to execute difficult movements ‘with confidence, power and grace’. In doing so, they develop cognitive strategies she believed could be naturally beneficial and enjoyable for people with Parkinson’s. The small, intimate classes in Brooklyn were a success, and news of the experiment began to spread. Using the New York class as a model, MMDG began an international training programme for dance teachers, inspiring a growing network of Parkinson’s dance classes.
Back in the UK, Val learned that the English National Ballet (ENB) had also heard of MMDG’s work, and had set up the first British classes. They were more than happy to train a dance teacher of Val’s choosing, and so it was at this point that Val turned to Three Rivers District Council to seek help in finding someone suitable, and to see if they would be willing to help to fund the initiative.
After two years of protracted bureaucratic rigmarole, which unsurprisingly failed to deter Val, Three Rivers agreed and set up a meeting, which included dance teacher Julia. “When I walked into the room and saw her,” explains Val, “I was astonished by the coincidence.” Not only are Val and Julia neighbours, but they also knew each other through the Chorleywood school where Val was volunteering as a Teaching Assistant and where Julia’s children were pupils.
“I had seen a BBC documentary about the Dance for Parkinson’s work of the English National Ballet, which really moved me” continues Julia, who has taught dance in the local area for more than twenty years. “When Three Rivers contacted me, I was hugely keen to find out more. If only we’d known about each other’s intentions before – it might have saved a lot of time…” they laugh.
Funded by a Three Rivers grant (Val is at pains to stress that, once on board, the local authority has been very supportive), Julia and a colleague went on to attend the English National Ballet’s training, in Oxford, and found it inspirational. Julia is very impressed with the quality of the artistic experience that ENB are keen to deliver, while understanding that every movement she teaches has a purpose and a specific benefit. “I teach a Flamenco dance, for example” she says. “The Spanish fan exercise helps with fine motor skills by building strength in the wrists and helping to loosen the joints.” She explains that she begins classes with seated exercises, and builds up to standing exercises, for those who can; moving onto choreographed steps, which help with memory, when the class is warmed up. “The goal is to get my students from concentrating on the steps, to ‘feeling’ the movement.”
The ENB’s philosophy is to maintain the professional nature of the class (“I don’t feel that it’s ‘dumbed down’” says one participant), which means that Julia teaches authentic ballet movements and ballet etiquette. “We’re not bending our knees, we’re doing demi-pliés,” she stresses. However, she’s equally keen to emphasise that no dance experience is required at all, and that everyone is welcome; whatever their age, gender or stage of illness.
In order to lend scientific credence to the initiative, ENB enlisted the support of the Centre for Dance Research based at the University of Roehampton. It came as no surprise to those involved that their findings fully endorsed DfP. The report identified a variety of positive outcomes, such as ‘helping people with Parkinson’s to stay motivated and maintain an active lifestyle; providing a meaningful and stimulating activity in a supportive environment and enabling participants to feel more capable and certain about the future, despite degenerative symptoms.’
The bottom line is to reduce the interference of symptoms in daily life. “I haven’t had nearly as many falls since I’ve been going along to the classes; I’d say they’ve been just as beneficial as physiotherapy.” Val says, and adds that the focus on building motor strength will also suit Multiple Sclerosis sufferers. “Carers more often than not join in too,” she remarks and points out that the current venue where the classes take place (William Penn Leisure Centre in Rickmansworth), is admirably wheelchair friendly.
Val’s infectious enthusiasm dims slightly as she explains the statistics for Parkinson’s. One person in every 500 has the disease: that’s about 127,000 people in the UK; and every hour someone in the UK is told they have Parkinson’s. “There are so many different symptoms, and each individual with have their own combination of symptoms,” she says, “meaning it’s very hard to find a general cure. There have been major discoveries in other [medical] areas; but not so much for Parkinson’s.”
One of the issues that the Centre for Dance Research also identified in their report is a lack of post-diagnosis support for neurological conditions; however they do, like Val and Julia, believe that DfP is valuable in bridging this gap. This belief is echoed by Patricia Needle, a DfP participant living thousands of miles away in California, who says of her class: “I am awed by the power of dance to transform and alleviate pain. Despite the steady advance of Parkinson’s, we show up. We move. We laugh. We share our best selves.”
If you’re a sufferer, a carer, or a healthcare professional and you’d like to find out more, you can go along and observe a class at a special open event on Thursday 11 May 12.15 - 2pm, William Penn Leisure Centre, Rickmansworth.
Regular classes take place every Thursday 12.30-1.30pm, at just £3 per class (cost is subsidised by Three Rivers), and there’s no need to pre-book.
For more info about DfP, see danceforparkinsonsuk.org or ballet.org.uk/learning/dance-parkinsons; for more information about Julia’s classes, see jkdance.academy