Man with Parkinson’s Disease regains some independence after taking part in research study
A Plymouth couple whose lives have been blighted by Parkinson’s Disease have shared their experiences of taking part in research in a bid to encourage others to do the same and help improve the outlook for future patients.
Bob Cheshire was diagnosed with the debilitating disease in 2004. He and his wife, Vivienne, who live in Plympton, have both taken part in research studies (Vivienne as a healthy participant) in a bid to help improve the outlook for others. They have spoken about their involvement in clinical trials as part of World Parkinson’s Day which takes place on April 11th.
The couple, both aged 75, have each taken part in separate clinical trials locally following Bob’s Parkinson’s diagnosis in September 2004.
Around 127,000 people in the UK have Parkinson’s – that’s around one person in every 500. Parkinson’s is a progressive neurological condition that is caused by a lack of a chemical called dopamine in the brain due to a loss of nerve cells. The symptoms of Parkinson’s affect movement and mean that people with Parkinson’s are more likely to have falls than other people of the same age.
The latest study Bob has taken part in, called PDSAFE, was the largest trial of its kind in the world 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.
Bob, a retired mariner and university lecturer, has to take medication every three hours throughout the day to help with his symptoms which include loss of speech and movement. But, following his involvement in the physiotherapy trial, he is now able to get himself out a chair, take normal steps using a walking aid and is working towards being able to get in and out of a car himself.
“Taking part in the trial has finally given me back some independence,” he said. “The things I am now able to do as a result of these physiotherapy sessions are things I haven’t been able to do myself for years.”
Vivienne, a retired nursing home matron, has also taken part in a clinical trial, but as a healthy volunteer. The study she took part in was exploring early diagnosis indicators in Parkinson’s Disease. She said taking part in research is important because it helps ensure the very best treatments and advancements in medicine are available now and in the future.
“When you live with someone who has a chronic disease such as Parkinson’s you just feel you need to do something,” she said. “All the advantages that Bob has had access to are as a result of other people taking part in research in the past.
“One of the things people feel about Parkinson’s Disease is that they have no control. But, if you take part in research you’ve got control – you’ve got a way of contributing and the more you understand about the disease the more you can understand what comes with it because you know why it’s happening.
“Research increases your understanding of the condition you are living with. Getting involved also might result in a direct benefit to you, as there has been for Bob, or the outcome might just be of benefit to future generations – but benefit is still benefit.”
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.
“We hope the results of this study will have a major impact on future healthcare policy and have a real effect on reducing the number of people with Parkinson’s who are injured by falls,” said Professor Ann Ashburn, who developed the study.
