A businessman diagnosed with motor neurone disease (MND) has called for better education around symptoms.
Scott Stewart, 42, was diagnosed 18 months ago, after initially raising concerns with his GP surgery in August 2022 about twitching in his leg.
He was diagnosed with MND, a degenerative nerve disorder, in March 2023 but became a father for the first time this year.
Mr Stewart now uses a wheelchair, after a lifetime of enjoying golf and rugby, and said the diagnosis was “like being hit by a freight train”.
Scott Stewart, wife Robyn and daughter Rae at their home in Stirling (My Name’5 Doddie Foundation/PA)
The diagnosis was made by neurologists, and Mr Stewart was told to “enjoy life while he could”.
He married wife, Robyn, in December and is continuing to manage his golf equipment business from their home in Stirling.
Working from home allows him to spend time with his wife and baby daughter, Rae, before the terminal illness progresses – but Mr Stewart believes more education needs to be done within the medical community, around early signs and symptoms.
Mr Stewart said: “It was dreadful. I called the surgery and before I’d even spoken to a doctor I was told I’d be wasting their time if I was to be put through – but I knew something wasn’t right.
“Neurologists eventually diagnosed me in March the following year, and it was like being hit by a freight train. However, it was also like a weight off my shoulders as I’d been driving myself crazy until then. The uncertainty was the most brutal thing. It’s a horrendous thing to process.
“I have a family to support, Robyn is on maternity leave, and I need to be able to help them as much as possible. Nobody opens a chequebook when you receive a diagnosis – you need money to get by, and so does your family.
“Maybe I could have gone on more holidays or taken more time out, but I’ve found working gives me a sense of purpose. It’s a reason to get up in the morning rather than be parked in front of the television or an iPad.”
Statistically, one in 300 people will suffer from MND, but Mr Stewart said there had been stagnation on treatment in the past 30 years, and he has taken part in medical trials for potential MND drugs.
He praised a University of Aberdeen study on biomarkers but called for more investment in research.
This year, he travelled to South Carolina for the US Masters golf in April, was a guest starter at the Scottish Open golf at the Renaissance Club in North Berwick and met professional golfers Rory McIlroy and Robert MacIntyre, plus the actor Dougray Scott, in July.
Mr Stewart said: “I’ve experienced some amazing things this year, but I know none of it would have happened if I wasn’t dying, and I’d swap it all for that not to be the case.
“There is no way in this day and age that people should need to face such a bleak outlook, and it’s up to everybody to get out there and help drive that change.”
He said rugby legend Doddie Weir, who died in 2022 from MND and launched the My Name’5 Doddie Foundation charity to help fundraise for research, was never one of his sporting heroes, but had become an inspiration since his diagnosis.
Mr Stewart said: “Growing up, Doddie Weir wasn’t a hero of mine. I was far more interested in his teammates like Gavin Hastings or Bryan Redpath. As an MND campaigner, however, it’s entirely different.
“Doddie has inspired so much change in the research community. It’s not about emotion or pity, and that’s why it’s so important to me to speak out, too.”
He added: “We need to improve knowledge of the early signs, but it all means nothing unless there are at least some treatment options.
“We’re in 2024, and the options available haven’t changed in more than 30 years. Until Doddie Weir, there wasn’t enough focus on making inroads into doing something that makes a difference to treating the disease.
“Any breakthrough probably won’t benefit me, but I’ll still use my voice to do anything to push it forward. There’s no way people should need to go through this now.”
Nicola Roseman, chief executive at My Name’5 Doddie Foundation, said: “Our primary focus is research, which is the only thing that will change the situation for people diagnosed in the future.
“Only by finding effective treatments, and one day a cure for MND, can we prevent people like Scott and others diagnosed with the disease from having to make that choice in the first place.”