Inside the North East support group helping families find friendship, laughter and hope
I was invited along to the monthly MND support group at Kingston Park, home of the Newcastle Red Bulls, where members gathered in the grand International Suite overlooking the pitch as the first team trained below.
But despite the impressive surroundings, what stood out most was the warmth inside the room.
For many people living with Motor Neurone Disease (MND), or supporting someone who is, walking into a support group for the first time can feel overwhelming. Yet the members I met spoke openly about how much the group has changed their lives.
“It felt like there was somebody else that knew what was going on,” one carer explained.
Another member admitted it took nearly a year before he could bring himself to attend.
“My wife came for about ten months before I did,” he said. “I always said, ‘No, I’m not going.’”
So what changed his mind?
With a huge grin, he laughed: “They were doing a Christmas quiz!” His competitive side got the better of him! Since then, he has attended every month, made close friends and, sadly, lost some too. But he said having people around him who truly understand life with MND has made all the difference.
The support offered by the group stretches far beyond the monthly meetings themselves. Volunteers organise group meals out for members who may no longer feel confident going to restaurants alone, as well as Christmas parties, Easter wreath-making sessions and trips to local attractions.
One recent visit to the Great North Museum in Newcastle was a huge success, with members fondly recalling the archaeologist who gave a talk there being very pleased to speak to adults for once!
Throughout the afternoon, I overheard conversations about the practical realities of living with MND — from the huge expense of home renovations to working out how to put your mascara on.
Members shared recommendations for garages that install wheelchair adaptations and specialist driving controls, while others swapped advice about where to find the best insurance for travelling with a pre-existing condition.
The volunteers were repeatedly praised as an invaluable source of knowledge, helping people navigate the support available through the MND Association.
I heard discussions about grants that can help with everything from bills and home adaptations to holistic therapies and wellbeing activities. Members explained that the Association’s wellbeing fund can even help people continue hobbies they love, including funding adapted bicycles and specialist equipment that helps them maintain independence.
“You can speak to any healthcare professional,” one attendee told me, “but until you’ve talked to someone that’s gone through the same as you, nothing comes close.”
Despite the seriousness of the condition, the room was full of humour. One gentleman, who has lost his ability to speak because of MND and now communicates using a notepad, still managed to keep everyone laughing — scratching a message across the page asking whether there was a grant available for his friend’s whisky supply.
It was a small moment, but one that perfectly captured the atmosphere of the group: honest, supportive and full of life.
“We don’t always talk about MND,” one member smiled. “We talk about all sorts of things.” Another joked: “We normally have to get people’s attention to shut everybody up because everyone makes so much racket.”
For many families in the room, that sense of community is what matters most. “Just to know you’re not alone,” one member said.
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And perhaps the most powerful comment of my visit came from one of the wonderful volunteers, explaining why they do what they do.
“There’s still lots of living to do.”
If you or somebody you love has recently been diagnosed with MND, support is available. The MND Association offers information, financial support, local groups and practical advice for people living with the condition, as well as their families and carers.
