Researchers from the University of Exeter are calling for people who have motor neuron disease to get in touch and take part in a year-long study.
For former Penzance football player and manager Dean Mooney, 52, the first symptoms of the condition were a stiffness in his left hand and a mild tremor in his arm.
The father-of-four said: “When I first noticed symptoms, I really wasn’t worried. It was an irritation in my work as a dentist. I thought it was simply too much caffeine, or dehydration – something like that.”
But, as lockdown came and went in 2020, Dean’s condition worsened, and a neurologist diagnosed him with MND in August. “It was a terrible time. I went through something close to the seven stages of grief.” said Dean.
“It took me 6 months before I realised that the disease wasn’t progressing as fast as I feared it might. I’m still here, and I have to make the most of it. I used to be very fit – I ran the Dublin marathon in 2017 and I was still running at Christmas 2021, although I was exhausted afterwards.
“Daily life has become a series of compromises. I can’t eat what I want, wear what I want, or do what I want. It’s frustrating not being able to plan. Should we go on holiday while I still can, or should we be modifying the house? We have no idea what I’ll be able to do in 6 months’ time. But despite all that, I know things could be a lot worse.”
Dean readily signed up to the Exeter research study. He said: “There’s a lot of talk in the media about a potential treatment for motor neuron disease. Let’s be real – it probably won’t benefit me in my lifetime, but if I can spare anyone else having to go through this, I’ll do whatever it takes to help get that research over the line.”
The Exeter study will involve participants undergoing cutting-edge PET and MRI brain scans in London, with accommodation and travel costs reimbursed for the study participant and a companion, and some compensation for time. This study, MIND MAPS ALS, will enable researchers to identify and track potential mechanisms of disease in people living with MND compared with healthy volunteers, and is a part of the MIND MAPS programme.
The MIND MAPS ALS study lead, Professor Marios Politis of the University of Exeter, said: “I’d like to extend our extreme gratitude to Dean, and other volunteers who are helping us to find answers and treatments for this cruel disease. Our findings will provide understanding related to the cause of the disease and help to track its progression over time. Most importantly the findings will help with the discovery of new targets for the development of treatments for motor neuron disease.”
To find out more about the study and to sign up, visit the University of Exeter website or email email@example.com.
Special thanks to Dean and University of Exeter for permission to share this story on Be Part of Research.