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Debbie (59), has advanced Parkinson’s disease, which causes her severe physical disabilities and can also affect her psychological wellbeing.
She has had a lifelong love of roller skating but gave it up not long after she was diagnosed, even giving away most of her skates and just keeping one pair which she decorated symbolically.
There was now a huge void in her life – no skating – but also a large mountain …. Parkinson’s disease. Debbie has kindly agreed to share her story with us.
“Faced by this huge void in my life, I began watching skaters on YouTube. Watching other people skate would help to a certain degree. During this period I came across a great skateboarder – Rodney Mullen and in particular, his TedTalk called ‘Falling and getting back up again’.
“This helped me to think of ways of skating again and shortly after this I found a three-wheeled trolley which I thought may give me an opportunity of freedom again. I also had to find somewhere to skate and began looking out for places.
“Then St. Barnabas came into my life when I was referred there for some respite care. I didn’t find my first stay there easy and I don’t think the staff found it easy either. With Parkinson’s disease some people suffer with dyskinesia – a lot of uncontrollable energy and movements.
“But because of health and safety issues and sheer bewilderment, they weren’t able to understand my desperation and need to skate. This left me climbing the walls. I understand the need for health and safety and the worry that someone with Parkinson’s would fall over and hurt themselves but we don’t!
“Spending time in the Day Hospice didn’t feel right for me either, it was too quiet. I needed loud music and to be able to move around a lot … not to sit still. But then I met Stevan, the Artist-in-residence. I told him I wasn’t an artist but we got talking and I was able to explain to him my need for movement. He would close all the doors and windows, let me put on some loud music and paint vigorously on huge pieces of paper stuck to the wall. I showed him a clip of me skating and I talked to him about the difference that skating made to my life. It is now becoming well known that vigorous exercise really helps people cope with the symptoms of Parkinson’s disease as it directs the uncontrollable energy to a positive activity, ie walking, swimming. I found my release in skating and wanted to share this with others.
“I also wanted to try and change some people’s perception of disabilities like mine, for example, I walk down the road looking really drunk, but I am not, and it’s a horrible experience. Stevan got to know me very quickly and really understood me, and what I was trying to convey. He came along to film me skating and helped me edit the film and choose a soundtrack made up from the music that I like to play when I am skating. I am delighted with the film, it tells my story and I can’t thank Stevan enough. We continue to work together and we are starting to plan a new project.”
The St Barnabas Education Team recently showed Debbie’s film to two groups of nurses during one of their teaching sessions at the hospice. The first group were from different clinical backgrounds and settings. The second group were all hospice nurses. Both groups of nurses viewed the film with great interest and discussed the various issues it raised for the person with the illness and for themselves. These included, for example, discrimination against disability, assumptions and judgement making, managing expectations, ‘seeing the person beyond the disease’, the ability to be free and to make decisions, the meaning of spirituality, the power of music, medication issues and making some sense of the concept of ‘resilience’.
Debbie’s story and film were also presented at the NAPCE (National Association of Palliative Care Educators) Conference in December 2017 in Leeds where it won the Frances Sheldon Poster Award in recognition of the best initiative to support the theme of the conference which was “Inclusivity in Palliative Care Education: Discerning or Discriminating”.
Debbie is very pleased that her film is being used in this way and says, “I feel that my film really had an effect and that I have achieved something. I think I have helped change perceptions at the hospice and am working together with them in partnership. I hope I can provide inspiration to other people like me.”