A Scottish businessman diagnosed with motor neuron disease (MND) at just 40 was told ‘he’d be wasting doctor’s time’ when he initially called a GP surgery about twitching in his leg.

Six months later, Scott Stewart discovered he had MND – for which there is currently no effective treatment or cure – and all doctors could tell the sports fanatic, a former schoolboy rugby international and scratch golfer, was to ‘enjoy life, while he could’.

Dad-of-one Scott, now 42, believes 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.”

Scott, 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, Scott married partner Robyn at Cromlix House in December, with the couple having first daughter Rae earlier this year. He has also enjoyed several ‘once-in-a-lifetime’ sporting experiences, including a trip to Augusta for the US Masters in April; being guest starter at the Scottish Open Golf at Renaissance Club in July, during which he met stars Rory McIlroy, Robert MacIntyre, and Dougray Scott; and receiving blue and yellow merchandise from the team at No Laying Up – one of the world’s biggest golf podcasts – to help fundraise for My Name’5 Doddie Foundation.

However, as Scott’s MND rapidly progresses, meaning he must now use a wheelchair, it is in continuing to run his golf equipment supply business – as well as being a vocal public advocate for people living with the illness and highlighting the challenges they face – that Scott has found his daily ‘purpose’.

Scott, originally from Campbeltown and who grew up in Dollar, Clackmannanshire,  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.  

READ MORE: 

Scott Stewart, Robyn Munro, and daughter Rae at their home in Stirling.Scott Stewart, Robyn Munro, and daughter Rae at their home in Stirling. (Image: Herald Picture Agency)

“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.”

Scott and Robyn 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 doubles up as Scott’s office. The alterations mean Scott is able to live and work at home, and spend quality time with Robyn and Rae. It has not been easy, however, with the couple having to move 10 times in three months – most of which were just after Rae was born – while the alterations took place, living at times ‘out of IKEA Bags’.  

Scott’s MND has taken his ability to do much of what he enjoyed previously, including golf and his job as a careers advisor. In his younger years, he studied business at the universities of Edinburgh and New Mexico, as well as living in Switzerland where he managed a sports camp for children and young people, before a career in recruitment. However, he prefers to focus on what he can do, rather than what he can’t, as he finds any negative or angry thoughts don’t help his situation. 

Much of his time now is spent advocating for people with MND, through regular candid posts on LinkedIn and Instagram, in which he lays bare his thoughts, experiences and frustrations – particularly with the continued lack of options for those diagnosed with the disease. 

It’s why the work of organisations including My Name’5 Doddie Foundation, the charity set up by the late Scottish rugby international Doddie Weir dedicated to funding research that may one day find cures for MND, is so important to him.   

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.”   

Robyn, a programme manager in public health, said: “I can't put into words just how special life has been since I met Scott. We have had some great adventures together. Walking up the aisle with Scott in the little chapel at Cromlix after we got married, and then months later seeing him hold our baby daughter in his arms just after she was born are some of the most special moments of our lives.

“However, I can't sugar coat it, receiving that kind of diagnosis, and realising there is currently nothing you can do to cure or make it better for your loved one is the hardest thing. Watching the person you love struggle physically as MND takes hold, and being able to do very little to stop it is heart breaking. However, there is so much support out there, particularly through My Name'5 Doddie and MND Scotland charities. For anybody facing this situation, don't be shy in asking for help and support. Once you are engaged with them, they are like the warm embrace you didn't know how much you needed until you got it.” 

Nicola Roseman, chief executive at My Name’5 Doddie Foundation, 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. MND affects everybody differently, but it almost always leads to a need for adaptations to homes, vehicles, personal, and professional lives – and all of that has an impact on finances. Support is often provided by families and friends, but not everybody is in that position.

“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 My Name’5 Doddie Foundation 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.”