A Scottish father diagnosed with motor neuron disease (MND) has called for more investment and research into the disease after his “dreadful” experience of being diagnosed.
At just 40 years old, Scott Stewart (below) was told “he’d be wasting doctor’s time” when he initially called a GP surgery about twitching in his leg.
Six months later, the Stirling-based father-of-one discovered he had MND – for which there is currently no effective treatment or cure.
Stewart, now 42, said more must be done to educate medical professionals and those who work with them on the early signs and symptoms of MND.
He said: “It was dreadful. I called the surgery on August 22, 2022 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. Even with all the publicity around MND they still didn’t know.
“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, but at least at that point I could begin to.”
Stewart, who was taking part in medical trials for potential MND drugs until this summer, said he is encouraged by signs of progress around early diagnosis, including a pioneering biomarkers study by the University of Aberdeen.
However, he added that it “means nothing” without more investment in research – which at present is reliant on fundraising from charities including My Name’5 Doddie Foundation (MNDF) and MND Scotland – to find treatments and one day a cure for the degenerative nerve disorder one in three hundred people will contract in their lifetime.
He added: “We need to improve knowledge of the early signs, but it all means nothing unless there are at least some treatment options, and progress has been too slow on that.
“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.
“I know any breakthrough probably won’t benefit me now, but I’ll still use my voice to do anything to push it forward. When you really think about it, there’s no way people should need to go through this now.”
In the 18 months since his diagnosis, Stewart married his partner Robyn at Cromlix House in December, with the couple having their first daughter Rae earlier this year.
Stewart, originally from Campbeltown and who grew up in Dollar, said: “The most important thing to me is why I continue to work. 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 an MND diagnosis – you need money to get by, and so does your family.
“In hindsight, 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.”
The couple made adaptations to their home in Stirling using a large part of their life savings, which includes the installation of ramps, widened doorways, and a garden room that also serves as Scott’s office.
Stewart said the work of organisations including MNDF – the charity set up by the late Scottish rugby international Doddie Weir dedicated to funding research that may one day find cures for MND – was important in inspiring change.
He said: “Growing up, Doddie Weir the rugby player wasn’t necessarily a hero of mine. I played a different position and 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 MND and wider research community, and for me that’s the true meaning of inspiration. It’s not about evoking emotion or pity, it’s about sparking something in somebody that makes them do things differently, and that’s why it’s so important to me to speak out too.
“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.”
Nicola Roseman (below), chief executive of MNDF, said: “An MND diagnosis is devastating, incredibly difficult to process, and means significant changes for those living with the disease and their families as symptoms progress.
“It means a significant number of people diagnosed with MND carry on working for longer than they would choose to make ends meet, to support their family, and to cover the cost of the changes they must make due to the disease.
“Of course, many people want to continue working as long as possible it provides a sense of purpose and normality in the face of a devastating disease.
“Support is available through MNDF and other organisations in the MND community, but 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.”
To find out how you can support research into MND, visit myname5doddie.co.uk.
