She has since lost her speech and needs a feeding tube but the support the couple have received from MND Scotland and Mobility Scotland has helped her retain as much of her own independence as possible.
She remains capable of performing many everyday tasks – including driving – and enjoys her hobbies at crochet club and bowling.
The couple, who have lived in Stuart’s native Hawick since 1990 having met while working in the racehorse industry in the south of England, believe the help they have received from the charity and mobility equipment supplier has been ‘game-changing’, with MND Scotland handling as much of the stress as they could during the early days of Claire’s diagnosis.
Stuart said: “They just said, look, we’ll take care of all this for you – things like applying for disability payments, and arranging power of attorney. They handled the whole process, and it took a lot of the stress away.
“They’re game-changers, making the process much easier than it would have been for us to handle alone.”
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Claire now uses a speech app on her phone to communicate after being advised to by the charity, with a local MND nurse also on hand to provide support in their home.
The couple has also been able to use a scheme where those with the condition can have a week’s free holiday each year at one of two holiday homes owned by MND Scotland while Mobility Scotland has also installed a recliner chair to improve Claire’s comfort at home.
Stuart said: “Billy Finnie from Mobility Scotland called me and said he’d been speaking to Jill, Claire’s MND nurse, and discussed the support MND Scotland could offer, initially with a recliner chair.
“Billy’s team is great. They came down, delivered it, installed it, plugged it in, and showed us how it worked. They were absolutely first class. It makes a real difference to Claire’s life, and is part of maintaining her independence.”
Referring to MND Scotland’s support, he added: “They steered me through the ‘jungle’ of Claire’s diagnosis. They made everything so easy and straightforward. Their door’s always open, which has been a great relief for me.
“It’s a great comfort to know that I now have a kind network of people I can ring up if I need help with anything, and it just gets done straight away. Their help, along with Mobility Scotland’s, has been invaluable.”
Their daughter Tara is a professional golfer and she arranged a fundraising driver with others from the Ladies European Tour to raise money for MND Scotland and other charities including My Name’5 Doddie Foundation.
The team of 10 drove balls 594,880 yards at Ashkirk Driving Range in the Scottish borders to represent the journey between Winterton-on-Sea in Norfolk, where Claire was born, to Hawick.
It took a full day to cover the 338 mile distance and the team has raised more than £10,000 having set an initial target of £5,000.
Billy Finnie, founder and Operations Director at Mobility Scotland said: “We pride ourselves on being able to make a real difference to the well-being of those living with mobility challenges, but it’s about much more than just supplying equipment – it’s about being there to support families through what can be an incredibly difficult and uncertain time. When we first spoke to Stuart, it was clear how much love and care he had for Claire, and we wanted to do everything we could to make life a little bit easier for both of them.
“Working closely with MND Scotland, we were able to identify the right equipment to enhance Claire’s comfort at home, starting with the recliner chair, and making sure the process – from selection to delivery and set-up – was smooth and stress-free. Knowing that the chair has already made such a positive difference to Claire’s day-to-day life is exactly why we do what we do.
“We’ll always be on hand to offer further support as their needs change, and we are proud to stand alongside MND Scotland in ensuring families like Claire and Stuart’s get the practical help, compassion and respect they deserve at every step of their journey.”
Angela Harris, director of support services at MND Scotland, said: “MND is an incredibly challenging disease that can progress very quickly. We provide personalised support to families like Claire and Stuart. We are here for everyone affected by an MND diagnosis and help them navigate those challenges, with practical, financial and emotional support.
“The nature of the disease means people living with MND often need adaptations to their homes to allow them to continue living comfortably and independently. It’s great to work with organisations such as Mobility Scotland who understand the accessibility needs of someone with the disease. Working together, we can support people to live as they choose at home.”
For more information on MND Scotland, see mndscotland.org.uk/. For more information on Mobility Scotland, see mobilityscotlandltd.co.uk/.
