An Aberdeen accountant who dedicates marathon runs to his late father has raised more than £18,000 in support of families impacted by Huntington’s disease.
Stuart Oag, of Cults, has spent the past two years training and fundraising for Scottish Huntington’s Association after losing his dad Les to Huntington’s disease, an incurable and hereditary condition with complex physical, mental health and cognitive symptoms.
He is sharing his experiences during Huntington’s Disease Awareness Month, which runs until 31 May, to increase understanding about the incurable condition and help ensure that all families have access to the specialist services they need.
His dedication has inspired an overwhelming swell of kindness from friends, family and work colleagues who kept Stuart going with generous donations and messages of support. He completed this year’s London Marathon in an impressive 3 hours, 48 minutes, 35 seconds, cheered on by loved ones including mum Hazel, his wife Glenda, their children Kirsty and Campbell, and his sister Julie and her daughter Ailsa.
“Dad was funny, fun-loving, generous, wise, loving and loved and we all miss him,” said Stuart.
“He was diagnosed with Huntington’s disease about 15 years ago. I guess we were fairly lucky because his symptoms started quite late in life, but things went downhill quickly in his last two years. He seemed very young at 65, he was fit and loved to socialise and go to the football. He remained pretty active right up to around age 70 but he was a very old and frail 72-year-old when he died.”
Huntington’s disease is caused by an inherited faulty gene that damages the brain and can lead to loss of ability to walk, talk, eat, drink and swallow. People with the disease can have recurring jerky movements they can’t control, dementia and reduced ability to plan, organise and look after themselves. Mental illness such as depression, anxiety and, in some people, psychosis, can also develop.
To compound the dreadful toll on families still further, each child of a parent with Huntington’s disease is at 50% risk of inheriting the disease.
“As the movements came on Dad began to have trouble swallowing and there was a risk he would choke or vomit. His walking was affected and he used a wheelchair in his later years. It was upsetting as those symptoms became more severe,” said Stuart.
“Having said that we did just learn how to manage and were able to have two family holidays and many nights out together, even when he was quite ill.
“I never heard Dad complain but it was very hard on him and my mum, Hazel, especially on those occasions when the disease affected his personality. Mum did an amazing job as Dad’s primary carer and it was only towards the very end that he had to go into a psychiatric ward and then to a home to be cared for.”
Les and Hazel were supported by Scottish Huntington’s Association, the only charity in Scotland dedicated exclusively to families with Huntington’s disease. It does this through a nationwide network of HD Specialists, youth advisors and financial wellbeing officers, in addition to campaigning for improved specialist services for families across Scotland.
“I’ve seen first-hand the difference that donations to Scottish Huntington’s Association can make for families,” said Stuart.
“We wouldn’t have known where to start but thanks to Scottish Huntington’s Association we had the help we needed. This included practical things like finding out about Carers’ Allowance, the Blue Badge, respite care and getting a wheelchair.
“There was also support for mum. She could speak to her Scottish Huntington’s Association HD Specialist about Dad’s symptoms and, just as importantly, about how she was coping.”
Stuart, who had previously completed the New York Marathon, ran his first London Marathon in October 2022 for Scottish Huntington’s Association – and loved the experience so much that he immediately requested a 2023 charity place.
“The fundraising over the past couple of years really took on a life of its own after I set up a JustGiving page and let people know what I was doing and why,” he said.
“It’s been overwhelming to see so many friends and colleagues donating and leaving messages of support. I’ve heard from people I’d not been in touch with for a long time and it’s been great to reconnect.
“When I turned 50 last year I celebrated with a party, and my friends gave donations instead of bringing gifts. Everyone has been extremely generous. Many of them knew my dad and they know how much this means to me.
“Dad had extremely difficult things to deal but with the support of his family and friends, and with help from Scottish Huntington’s Association, he acknowledged his condition, did what he could to manage it and lived the best life possible until Huntington’s disease finally overtook him.”
Scottish Huntington’s Association Chief Executive Alistair Haw said: “Stuart has made an incredible contribution to our work and we are sincerely grateful for all that he does to raise awareness and help to ensure that other Huntington’s families have the specialist support they need. I’d also like to congratulate him on his success at the London Marathon this year – his excellent time shows just how much hard work and training he has put in on our behalf.”