“We are on this journey, but it helps to know the MND community is there for you”: Stuart shares his story this Carer’s Week

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face, and recognise the contribution they make to families and communities throughout the UK. This year’s theme is ‘Caring About Equality’ highlighting the inequalities faced by unpaid carers.

This week, MND Scotland is acknowledging the commitment, strength and resilience of over 700,000 unpaid carers in Scotland who provide vital support to family members, friends and loved ones with needs. One of those carers is Stuart Mactaggart. Stuart cares for his wife, Claire, following a motor neuron disease diagnosis.

Speaking about his role as a carer, Stuart said: “There’s no question that’s it’s beginning to evolve. The last six months have been, what you might call ‘straight forward’ to some extent, however I’m beginning to do a lot more now than ever before. I’m seeing how the disease is taking its grip on my wife. It can be difficult when you hear her beginning to choke or make some noise, so I make sure I’m always there. I’m becoming a lot more involved in the day-to-day issues.”

Stuart Mactaggart, 59, was born and raised in Hawick, a small town in the Scottish Borders. After leaving school, he moved south to the Horse Racing Village of Lambourn in Berkshire, England.

In 1987, when they were both in their early twenties, Stuart met his wife, Claire. Claire, originally from Winterton-on-Sea in Norfolk, England, was working in a different horse racing yard in the same area as Stuart. He describes their meeting as “love at first sight.”

The couple married in 1989, and one year later moved back to Hawick. They have been together ever since.

They have two children, Gina, 33, who works as a customer services assistant and Tara, 29, a professional golfer. Last year, the family welcomed a new addition to the family, Stuart and Claire’s granddaughter, Remie. Earlier this month, the couple celebrated their 36th wedding anniversary.

Stuart wants to share his story about being a carer to highlight the significant impact that a diagnosis of motor neuron disease (MND) has, not just on the person with the disease, but on the people around them.

Claire was diagnosed with MND on 5^th July 2024. Speaking about the time leading up to her diagnosis, Stuart said: “We noticed back in September 2023 that Claire was slurring her words. The following month we went to a neurosurgeon at Scottish Borders General Hospital, and they started running various tests.

“It took about 6 months before getting an MND diagnosis as everything else had to be ruled out first. During that time, her speech started to deteriorate, and one month after her diagnosis, her speech was completely gone”.

There are around 450 people in Scotland currently living with MND. On average, almost 200 people are diagnosed each year in Scotland.  The average life expectancy of someone with MND is just 18 months from diagnosis. There is no cure or meaningful treatments.

Towards the end of last year, Claire found it increasingly difficult to eat on her own, leading to the decision to have a feeding tube fitted. During Christmas 2024, she was unable to eat or drink independently. Since then, there has been a decline in the strength of Claire’s arms.

Stuart continued: “Motor neuron disease was something I was aware of. I knew Doddie Weir a long time ago as he is local to the Scottish Borders and was also made aware of the disease through Rob Burrow.

“My family were kindly invited to run the final mile in Kevin Sinfield’s ‘Running Home for Christmas’ challenge in November 2024. My daughter and her friends also organised a ‘Drive for MND’ golf fundraising challenge. They worked out the yard distance from the village my wife is from, Winterton-on-Sea in Norfolk, to Hawick, and as a team, took turns reaching the total. They raised more than £8,000 for MND Scotland”

Motor neuron disease as a descent into the unknown. Stuart said: “I see it as being on a journey – everyone with MND has a different experience. It’s like you are on a ship at sea – you know there’s a storm coming, but you are not quite sure when, or how vicious it’s going to be. The best way to describe where we are now is rolling around in choppy waters. We are on this journey, but it helps to know the MND community is there for you.”

He recognises the importance of taking ‘time out’: “As a carer, you need some ‘me time’. We have two dogs, Seve and Rafa, and every afternoon I take them for a walk for a few hours for some respite.

Despite ongoing challenges, Claire remains positive and active. Stuart said: “You have to get on with it. I want Claire to do everything she possibly can at the moment. She can still drive and go shopping etc. She enjoys participating in local bowls tournaments as well as crochet. It’s important for her to have as much independence as possible. We are just trying to live a perfectly normal life as much as we can.

“It helps to talk about it. In the beginning, it was upsetting, but I realise it’s important to talk about it. The full family have been very supportive. Claire has a lovely group of lady friends who have been so kind. It’s nice to know that there are people out there who care”.

MND Scotland is the only charity in Scotland dedicated to directly supporting people living with motor neuron disease and their families and friends.   The charity can help carers and those affected by MND with support for wellbeing, independence, financial assistance, and advocacy.

Families affected by MND can also access two specialist holiday homes in St Andrews and Oban. The lodges are fully accessible so families can spend more time making precious memories with loved ones.

The couple were able to access support from MND Scotland and holiday at the St Andrew’s Lodge following Claire’s diagnosis: “MND Scotland has been brilliant. When we were told about Claire’s MND diagnosis, we didn’t know what to do or where to go for support. MND Scotland stepped in and did everything for me – from helping with accessing benefits to providing support on how to set up Power of Attorney, and support in writing a Will – they were fantastic. Without them, it would have been a minefield, and I wouldn’t know what I would have done. I sincerely can’t speak any more highly of them”.

MND Scotland would like to thank Stuart and Claire for sharing their story, and also say thank you all the carers who continue to provide support to friends, families and loved ones affected by MND.

To find out more about how MND Scotland can help support you or your family following an MND diagnosis, please get in touch by calling: 0141 332 3903, emailing: support@mndscotland.org.uk or visiting our website:  www.mndscotland.org.uk.

For more information about Carers Week, please visit: https://www.carersuk.org/news-and-campaigns/our-campaigns/carers-week/