A moving story

Sue Wylie and Toly Botha in Kinetics

On the face of it they have little in common – she’s a woman in her fifties with early-onset Parkinson’s; he’s a teenager far from home who doesn’t fit in with the world around him. She’s trying to come to terms with her range of conscious movements being slowly eroded; his overload of feelings finds release in parkour, the art of free running.

What they both want is to be able to move, but on their own terms.

It is an unlikely friendship, but now their story is the subject of a film that is helping to raise awareness of Parkinson’s, the progressive neurological condition characterised by involuntary body tremors, slow movement and inflexible muscles. It is thought to affect around one in 500 people in this country and although most develop symptoms in their forties and fifties it can occur in younger people as well. There is no known cure.

Sue Wylie was 50 years old in 2011 when she was told she had Parkinson’s.

‘It was a cold, brutal diagnosis that just left me high and dry, I didn’t know what to do really,’ says the actress and writer from Martinstown.

‘I’d gone to the GP after noticing I was unusually tired and had some dexterity problems with my left hand, I couldn’t type as well as I did and when I was walking my left arm wasn’t swinging as it should, it was just sort of hanging there.’

Sue continued her teaching job, which is how she met Laszlo – a Swiss teenager who was in trouble for running on the school roof and was on the verge of being expelled before he could complete his GCSE exams.

‘We got talking and I suggested he write a monologue that explained his urge to go free running. He’s incredibly bright, but was completely bored by school. His only release was to jump, climb and run all over the school, which obviously didn’t go down well with the authorities and they’d had enough.

‘Meanwhile, I kept having this idea that I wanted to write about Parkinson’s to try and make sense of it for myself, then I got this tingle one day and it hit me – I needed to write a play about these two characters that are polar opposites but linked by their desire to move.’

As the play, Kinetics, took shape Sue approached Dorchester Arts with a view to hiring the Corn Exchange for a single performance. She met artistic director Mark Tattersall who suggested Dorchester Arts could work with Sue as a community project.

‘And from that moment things started to gel. Everything that has happened since comes back to that meeting with Mark and his energy and vision for what could be achieved. Mind you, we still had to raise about £20,000 to take the play on tour. We approached local businesses and made a successful application to the Arts Council, but the response was incredibly positive.’

In 2016 the play – in which Sue (who played herself) and Laszlo (who left the production after four performances to be replaced by Roly Botha) are called Rose and Lukas – toured to 12 venues throughout the south and west as well as London, striking a chord with audiences regardless of how, or even if, their lives had been affected by Parkinson’s. Each performance was followed by an open Q&A session with a health professional that Poole Hospital and Dorset County Hospital consultant neurologist Dr Ralph Gregory was instrumental in arranging.

By the end of the tour there was a growing realisation that something more needed to be done so that people throughout the country could see Kinetics– there needed to be a film version.

‘It was always important to me that the play should stand up in its own right and the feedback from our audiences certainly reflected that,’ says Sue. ‘It was incredibly satisfying on lots of levels, but I found the whole experience incredibly empowering and completely cathartic – Rose and I are quite alike, we share a similar sense of humour, but I think she’s angrier or more frustrated than I’m inclined to be. It’s more dramatic that way.’

Sue Wylie in the stage version of Kinetics

Having slightly adapted the script for the screen version, Sue reprised her role, as did Roly, and in January the film screened to appreciative local audiences for the first time at the Plaza in Dorchester. Not only have Parkinson’s UK groups been organising local showings nationwide but, much to the delight of all involved, the charity and both Dorset County Hospital and Exeter University want to use sections of the film for training purposes.

‘We crowd funded through Kickstarter to raise money to make the film and as a compete technophobe I turned to my son to help me. He told me he was happy to but that he also wanted it to work so that he could show it to his own children and grandchildren, as my legacy if you like. If that’s what it becomes I shall feel happy to have left something useful behind.’

But the story is far from finished. Sue, whose one-woman show In Search of Stardomearned a Time Out Theatre Award nomination, continues to write. She’s on the committee for Dorchester Community Plays Association, plays tennis and enjoys yoga every week and volunteers at a school to help children with reading.

‘There could be more to come from Rose because although she represents how I felt about Parkinson’s and lots of other things in 2011, she is a character of that time and I might have slightly different perspectives now that my symptoms have progressed. I’m not sure I could play her again though.

‘I find it frustrating that the medication for Parkinson’s has barely changed for 50 years and although Neurolin smoothes things out some of the symptoms are side effects of the drug. The number of stories I hear about badly delivered diagnoses is another frustration.

‘I’d love there to be a cure, but until there is I live each day as it comes and don’t worry too much about the unknown. After one show a member of the audience gave me a motto that has stuck – Accept. Adapt. Adjust.’

:: DVD copies of Kineticsare available at www.dt2productions.co.uk.

• First Published by Dorset Life – The Dorset Magazine.

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