A 77-year-old retiree, who has been living with Parkinson’s Disease for five years, has set himself the challenge of walking a 120-kilometre section of Hadrian’s Wall to raise funds for The Centre for Brain Repair at Addenbrooke’s Hospital and to raise awareness of the importance of exercise for people living with Parkinson’s - at the point of diagnosis.
Trevor Elliott, from Norfolk, was diagnosed with Parkinson’s in September 2019 and it came at a point where he was already very low, having lost his wife, Maryse, five months earlier from Leukaemia. “Losing my wife after 48 years together was like losing my legs. It was a very dark time for me.”
It took approximately two years for Trevor to get diagnosed because he initially put his tremor down to nerve damage on his spine. “I developed a tremor in my right hand, and it got so bad I was dropping things all the time. I couldn’t even carry a cup. My wife and I would try and make a joke of it. We’d say I had a good hand for shaking sugar over strawberries.”
After receiving his diagnosis, Trevor decided to take back control and turned to the internet for answers. “I found some videos from a US symposium and one of them was about exercise and how it allows you to take back control – and that to me is the key message here.”
Parkinson’s Disease is a life-changing neurological condition that affects both loss of mobility and cognitive dysfunction. It affects 153,000 people in the UK today and over 7 million worldwide. One in 37 people alive today in the UK will be diagnosed with the condition in their lifetime and currently there is no cure. Alongside pharmacological treatments, exercise is fundamental in the management of Parkinson’s disease. Evidence over the last 10 years has shown that being active can improve not only mobility, reduce falls risks and alleviates symptoms such as pain and stiffness but also reduce anxiety and depression. Regular physical activity improves mood and overall physical health, boosting confidence and independence in daily activities.
Trevor was one of six Parkinson’s patients to work directly with a specialist Physiotherapist and PhD Fellow at the University of Cambridge to co-design a digital intervention, Knowledge Exercise Efficacy and Participation (KEEP), which aimed to promote the importance of exercise for people with Parkinson’s at the point of diagnosis.
The KEEP study was part of a 3-year PhD Fellowship funded by the National Institute for Health and Care Research, Applied Research Collaborations East of England and was supported by an Addenbrooke’s Charitable Trust (ACT) grant. The intervention was led by PhD fellow, Ledia Alushi Agley, whose studies address the issues of early promotion of exercise together with early involvement of allied healthcare professionals - such as physiotherapists and speech and language therapists - in the care of patients with Parkinson’s.
The KEEP intervention consisted of six online modules and four online group discussions facilitated by a specialist physiotherapist. Modules looked at the importance of physical activity, how to exercise effectively with Parkinson’s as well as Taking Control following diagnosis. An integral component of the intervention was the inclusion of personal stories and messages from people living with Parkinson’s, including Trevor. These personal accounts offered valuable insights and motivation, demonstrating real-life examples of how to manage and thrive despite the condition.
To raise awareness of the importance of exercise, Trevor set himself the challenge of walking a 120-kilometre stretch of Hadrian’s Wall, from Newcastle to Carlisle, after contracting Sepsis last year. “The Sepsis kicked off all my Parkinson’s symptoms and made them deteriorate. I needed some counselling at the time too, as anxiety and depression are part of the disease. It made me feel vulnerable for the first time. In the end, I decided the best way for me to get out of this spiral of depression was to think about other people and take on this challenge.”
Trevor hopes to raise £1,200 for The Centre for Brain Repair through Addenbrooke’s Charitable Trust, the official charity for Addenbrooke’s and the Rosie, whose supporters raise funds to help make the hospitals even better by funding cutting-edge research, innovations and high-tech equipment, above and beyond what the NHS is able to provide.
Accompanying him on the walk later this month will be his eleven-year-old dog, Sam, an English Pointer, “who is the same age as me in dog years, we’re both 77.”
“It’s not hard to walk 12 miles a day. It’s all about getting up the next day to do it all again but for someone with Parkinson’s it’s also the constant fight with fatigue and apathy.”
Diagnosed with ‘right-side’ Parkinson’s, Trevor’s balance and co-ordination is affected, with tremors in his right foot and hand, along with low mood and fatigue associated with the disease.
“One of the problems of Parkinson’s is fighting fatigue and apathy. If I keep going during the day I am fine but if I sit down I could fall asleep. It’s the battle of keeping active and doing stuff but I still go to the gym twice a week and walk 10km each day.
Ledia said that non-pharmacological interventions like KEEP, which promote the role of exercise around the time of diagnosis, are crucial as they can help patients manage their symptoms and continue to live well with Parkinson’s.
“Introducing these interventions in the NHS Parkinson’s pathway at Cambridge University Hospitals and Cambridgeshire and Peterborough Foundation Trust as part of a randomised control trial showcased the positive impact the intervention had in improving participants’ understanding of the role of exercise and their confidence in trying different exercises as soon as they were diagnosed, rather than waiting until mobility has deteriorated.”
Trevor believes that participating in research studies like the KEEP intervention plays a vital role in highlighting the significance of physical activity in managing Parkinson’s disease.
“When first diagnosed, I was told I had a window of between 6 and 14 years before I would be incapable of looking after myself which was a complete turnaround for someone who, although 72 years old at the time, was still active and walking 10 kilometres a day and had camping and hill walking down as my main hobbies. I was devastated. Nobody told me at the point of diagnosis about the importance of exercise. I just walked out of the hospital with this window of time I had left in my head.”
Trevor hopes that by doing his walk it will give hope to others diagnosed with the Parkinson’s. “When Jeremy Paxman presented a Parkinson’s Petition to Downing Street delivering a list of recommendations, the headlines were ‘Having Parkinson’s makes you wish you hadn’t been born.’ I am really annoyed with Paxman for that. I think it’s absolutely awful. You can either be like Paxman or take some control. I have been given this window of between 6 and 14 years before my symptoms make it impossible to look after myself. I have good and bad days but I would like to push that window as far as I can.”
To sponsor Trevor and donate to Parkinson’s Disease Research through ACT, click here
If you would like to make a difference and fundraise for ACT, go to: Upcoming events - Addenbrooke's Charitable Trust (act4addenbrookes.org.uk) for a selection of events you can sign up to. Alternatively, email: fundraising@act4addenbrookes.org.uk
