Actress Sue Wylie talks about how a chance meet with a student free-runner led to her performing in both a play and short-film about her life with Parkinson’s.
I was diagnosed with Parkinson’s in 2011 when I had just turned 50. I suddenly started to notice I was getting very tired, but I was teaching at the time and just thought, don’t most teachers get tired? I also lost my sense of smell, which I thought was unusual but I just put down to hayfever. Then I noticed my left hand started seizing up.
When I was diagnosed I really didn’t feel comfortable talking about having Parkinson’s. In fact, I think I was in denial for a while. But I felt I needed to challenge myself. I had been an actress for 20 years and kept thinking, ‘I need to write about this’. But I didn’t want to do something that was overly earnest or purely educational.
Free-running to the theatre
By chance, Laszlo (pictured above), one of my drama students, was discovered free-running along the rooftop at school. [Free-running, or ‘Parkour’, is the acrobatic sport of moving along a route, typically in an urban environment, by jumping, climbing, or running]. Laszlo was a bright but bored school student, getting into trouble and not focusing on his work. But I had a lot of sympathy for him, despite his rebellious tendencies, and I suggested that he do a solo piece about his free-running for the drama class.
This got me thinking. The unlikely friendship between a woman with early onset Parkinson’s, and a 16-year-old lad who is into such a high-adrenaline hobby, who literally lands on her doorstep. His world of movement in contrast to hers. It was then that I realised I had my play, and Kinetics was born.
I suppose really it was a play written in reaction to my diagnosis. Not only was I wanting to process things myself, but I wanted to challenge the stigma around the condition and raise awareness. I felt it was important to use humour as well as looking at the reality of being diagnosed with a condition like Parkinson’s.
Laszlo teamed up with me for the initial performances. It was a great opportunity for Lazlo as a drama student to showcase his talents. His grandfather was also living with Parkinson’s at the time. We played characterised versions of ourselves in the hour-long play, but the storyline was largely true to our real-life experiences.
Our first outing was at the Dorchester Corn Exchange in 2015. It was very well-received and we were delighted to then get funding from the Arts Council, which allowed us to take the play on a further 12-week tour. Prior to this we had been working working with Parkinson’s UK local groups in the south west to develop the piece further. The response was amazing and it really seemed to touch people, with many shows being sell-outs. An integral part of the evening was the post-show Q&A session where health professionals joined us to answer questions and issues raised by the audience.
From stage to screen
Following the success of the tour, my son (who is much more au-fait with social media and the internet than I am!), set up a crowdfunder to turn the play into a short-film. A lot of people in the Parkinson’s community got involved, and we received some hugely generous donations. In the space of a month we hit our target, and were able to start work on the production of Kinetics the film.
I experience dyskinesia, or ‘involuntary movements’, as a side effect of my medication, so at times that made filming a challenge.
By now Laszlo was back in Switzerland, planning an expedition to Costa Rica, so we auditioned for his part and cast Roly Botha as ‘Lukas’ (pictured below). The next step was to find a film producer and I was fortunate to be introduced to Tom Martin from Band Films in Bristol. We had an instant connection.
We shot the entire film in just six days. I experience dyskinesia, or ‘involuntary movements’, as a side effect of my medication, so at times that made filming a challenge. But I managed my symptoms by getting plenty of rest, and I think a lot of the time I was just living off the adrenalin! The results exceeded all our expectations. Band Films did us proud.
The film has had screenings in cinemas around the country, including Baker Street cinema in London, the Dorchester Plaza, and the Everyman in Nottingham, arranged by the Parkinson’s UK Trent Bridge café. We are very excited that it is to be screened at the 2019 World Parkinson’s Congress in Kyoto, Japan. A theatrical version is currently in production in Perth, Western Australia – showing we are really going global!
Kinetics is now being used extensively as a training resource in hospitals and medical training centres. It helps examine patient empowerment, the delivery of bad news by health professionals and remove some of the misconceptions that surround this complex condition.
As the character Rose says in the film, ‘I may be slow, I may have a tremor, but I’m not a bloody idiot.’ I hope that is something I have proved with Kinetics.