A dentist and former football manager whose life has changed dramatically since his ALS diagnosis has appealed with others who have the disease to join him in a new brain imaging study to help the race to find new treatments.
The University of Exeter’s world-leading Neurodegeneration Imaging Group, led by Professor Marios Politis, is appealing for people who have ALS (also known as motor neurone disease) to get in touch, and take part in a year-long study.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes damage to the nerves that lead from the brain throughout the body, known as motor neurones. As these motor neurones deteriorate, a person’s ability to move voluntarily is diminished, impacting movement and speech. Early symptoms include muscle weakness, and the disease almost always progresses. Most people with ALS eventually lose the ability to walk, dress, write, speak, swallow, and breathe, and their life span is shortened.
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 is originally from Ireland, but moved to the UK aged 16, starting at dental school two years early because of his academic ability and has lived in Penzance for over 20 years. He said: “When I first noticed symptoms, I really wasn’t worried. It was an irritation in my work as a dentist, and in my sailing activities. 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 ALS in August. “I went outside and sat in the car and started Googling, which is the worst thing you can do. The only reference point I could think of was Stephen Hawking.”
Over the following months, Dean told his wife and children, now aged between 16 and 22, as well as the wider community. “It was a terrible time. I went through something close to the seven stages of grief. I researched going to the euthanasia clinics in Switzerland, and each new person’s reactions often made me confront it all afresh. Since those early days I’ve tried to be very matter-of-fact about it, though, and my family has taken the same approach. I smile, so they do.
“It took me six 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. Now sometimes I can still go out on the sailing boat, but I’m now simply a passenger rather than an active participant.
“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 six months’ time. But despite all that, I know things could be a lot worse.”
Dean readily signed up to the Exeter research. He said: “There’s a lot of talk in the media about a potential treatment for motor neurone 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, at the Invicro Imaging Centre on the Hammersmith Hospital Campus, 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 ALS compared with healthy volunteers, and is a part of the MIND MAPS programme. MIND MAPS (Molecular Imaging In Neurodegeneration – Mitochondria, Associated Proteins and Synapses) is a pre-competitive collaborative programme between Invicro, the world-leading translational imaging company, leading UK academic research centres and pharmaceutical collaborators (Biogen, AbbVie, Takeda, BMS, Pfizer and Alkermes) and aims to evaluate molecular markers of the neurodegenerative process. 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 neurone disease.”