“You always hope you may be the one that enables someone to find a cure,” Plymouth man living with Parkinson’s shares research experience
A retired dockyard worker with Parkinson’s Disease has said he is taking part in research because he wants to do “whatever he can” to help professionals find a cure.
Seventy-two-year-old Bob Keane, from Lower Compton in Plymouth, was diagnosed with Parkinson’s Disease five years ago. He said the diagnosis left him “devastated” and is now taking part in research in a bid to help medics find a cure for the debilitating disease. He has spoken about his condition and involvement in a clinical trial as part of World Parkinson’s Day which takes place on April 11th.
“I was devastated when I received my diagnosis in November 2013 because I had recently lost my wife and had also just had my prostate removed,” said Bob, a former control engineer at Devonport Dockyard.
“I didn’t know much about Parkinson’s and I was shocked and worried as I did not know how it would affect me and my family. I was surprised to learn it was Parkinson's as I did not display any of the symptoms that you would usually associate with the disease - such as the typical shaking. I couldn't understand why it was happening to me.”
Bob said living with Parkinson’s Disease has left him feeling lonely and sometimes isolated.
“I have difficulties with my speech and I often fall and then find it very difficult to get up again,” said Bob. “My motor skills are affected - I often freeze in the middle of an action, such as turning or changing direction, and it can take me some time to get started again. This makes it difficult in crowded areas as I am not able to respond quickly to avoid people or objects and therefore I often fall.
“My symptoms make it difficult to function confidently in normal day to day activities. I find it frustrating that I am unable to communicate the simplest things over the phone, and I am embarrassed during face to face conversations because I have to repeat myself to be understood.”
Bob, who lives on his own, has recently taken part in a research study called PDSAFE - the largest trial of its kind in the world looking to help people with the disease fall less often.
Funded by the National Institute for Health Research, the study explored the benefits of regular physiotherapy over a six month period and its effects on balance, walking and overall confidence.
“I have been having physio at Mount Gould which has been very good – surprisingly the physio hasn’t just helped my mobility but my brain too and I now remember things better and can focus on the task in hand which in turn helps my mobility,” said Bob.
“Research is a positive thing to be involved with - I am keen to do whatever I can to help professionals get closer to finding a cure. Taking part in the study has also given me a bit of confidence back.
“Parkinson’s can be a lonely and frustrating disease to live with so an offer to be involved in something interesting and positive such as research can really help you to feel more involved and like you personally can make a difference for others too.
“There is also always that bit of hope that you may be the one that tips the balance and enables someone to find a cure.”
The PDSAFE study, led by researchers at the University of Southampton, was delivered locally by research active clinicians at Livewell Southwest, supported by the NIHR Clinical Research Network in the South West. The results, which are now being analysed, will inform guidelines for people with Parkinson’s and their therapists.
