“I ran for my dad, he was funny, fun-loving, generous, wise, loving and loved and we all miss him.”

“I ran for my mum and for my family. And I ran so the wonderful people at Scottish Huntington’s Association can continue to support families living with Huntington’s disease.

“But most of all, I ran for my dad.”

Earlier this year Stuart Oag (49) from Aberdeen took on his first London Marathon in support of Scottish Huntington’s Association. He rallied his family, friends, work colleagues and networks and has so far raised an incredible £12,000.

“My dad, Les, was diagnosed about 15 years ago. I guess we were fairly lucky as his symptoms started quite late in life,” said Stuart.

“However, things went downhill quickly in his last two years. He seemed very young at 65, he was fit, loved to socialise and go to the football and remained pretty active right up to around age 70.

“But when he died, he looked a very old and frail 72 year old. 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 could be quite upsetting as those symptoms became more severe.

“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 Dad 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 Dad’s personality. Mum did an amazing job as Dad’s primary carer and only towards the very end he did have to go into a psychiatric ward and then to a home to be cared for.”

Les and Hazel were supported by an HD Specialist and a Financial Wellbeing Officer from Scottish Huntington’s Association.

“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,” said Stuart.

“There was also emotional support for mum. She would speak to the HD Specialist about Dad’s symptoms and just as importantly, about how she was coping.”

Stuart, who had previously completed the New York Marathon, decided to dedicate this past year to training for the London event and raising money. With the help of the charity’s Income Generation Team he secured a place – then began telling everyone what he was doing and why.

“After setting up my Justgiving page and emailing people to let them know it was there and why, things just took on a life of their own,” he said.

“It was overwhelming to see so many friends and colleagues donating and leaving messages of support. I heard from people I’d not been in touch with for a long time and it’s been great to reconnect.”

On the day of the marathon, Stuart’s family including mum Hazel, his wife Glenda and children Kirsty and Campbell, and his sister Julie and her daughter Ailsa, arrived in London to cheer him on.

“Every few miles I’d spot them in their blue SHA t-shirts waving big inflatable bananas so I wouldn’t miss them,” said Stuart.

“The atmosphere was unbelievable and I was flying until mile 21 when my legs started to cramp. Then and there my priorities changed. I wasn’t going for my best time, it became about finishing the last part of the race and doing everything to get there successfully.

“That’s how I feel about Huntington’s disease. My dad’s life was flying along for 65 years, but in that final stretch he had extremely difficult things to deal with – much more difficult than a bit of cramp for an hour in a marathon! 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 at age 72 Huntington’s disease finally overtook him.”

*We thank Stuart for sharing his experiences and continuing to support our work. He is already training for the 2023 London Marathon and if you would like to join him please let us know. We have a small number of charity places left – email linda.winters@hdscotland.org for more information.*