Research Study Gives Devon Parkinson’s Patient ‘A New Perspective on Life’
A Cullompton man has described how volunteering to participate in the Vision In Parkinson’s Study has given him a new perspective on living with the disease.
Nigel Coleman, 56, an Environmental Safety Manager was diagnosed with Parkinson’s disease in February 2018 and since then he has been involved in clinical research studies, patient groups and events to get a better understanding of the condition.
Approximately one in 500 people are thought to be affected by Parkinson’s disease with most developing symptoms over the age of 50. There is currently no known cure of Parkinson’s but clinical research studies are focussing on this area to improve care, treatments and hopefully identify a cure.
Nigel explained why he got involved in research as a volunteer participant: “I agreed to be involved because I want to learn more and understand [Parkinson’s disease] better. Research comes with benefits such as health checks, connections and more information.”
The Vision In Parkinson’s study is being run at multiple sites across the country and Nigel attends Royal Devon & Exeter Hospital to have blood samples taken and to complete a vision test. He has been supported by the Research Team there including, Chris Lovegrove, Clinical Research Fellow. Nigel described his experience:
“Chris and his colleagues made me feel valued. This made me not afraid to do other studies. Hospitals can be daunting places especially if you have anxiety but it’s a bridge to the medical world.”
Dr Rimona Weil, Chief Investigator for the Vision In Parkinson’s study, said: “It’s wonderful to hear what a positive experience Nigel has had from taking part in our research study. As well as contributing to helping us understand Parkinson’s better, taking part in research is also an important step towards taking control.”
In addition to the extra time with clinicians Nigel has seen the support available from the ‘Parkinson’s community’ as a real benefit of volunteering to be involved in research.
“Research inspired me to get involved and expand my involvement in the Parkinson’s community. PenPRIG brings together people with Parkinson’s, clinicians and scientists. It’s good to be intensively involved; it’s given me more of an opportunity to understand me.”
The Peninsula Parkinson's Research Interest Group (PenPRIG) is an independent group of volunteers set up to promote participation into Parkinson’s research in Cornwall and Devon. Nigel is the Devon representative and this has given him the chance to continue his involvement with the active community. The group put on a joint event with Parkinson’s UK and the NIHR CRN in September to share the latest information on Parkinson’s research in the region. He’s thankful for the fresh perspective research has offered him, as he says:
“Research gives me a view that I can trust rather than just my own. I may not recognise something because I’m getting on with life. It helped give me a perspective of life and where I’m heading.”
