Jim recently came to our Northern Ireland accessible beach day, in partnership with the Mae Murray Foundation, and was able to get in the sea with his wife for the first time in 10 years, like they used to. He shares what the day meant to him, and how being reconnected with the community has helped him, as well as the support he’s been receiving from our advocacy team.
“I hadn’t been able to go in the sea in a decade – until the accessible beach day we attended.”
Living with GNE Myopathy has shaped much of my life. I was diagnosed in my early 30s, and now, at 66, the condition has progressed to the point where I use a wheelchair full-time. As my mobility declined, so did access to many of the things I loved.
I used to go sea swimming regularly with my wife, Maggie. But until recently, I hadn’t been in the sea for ten years. My wife still goes with her friend, and sometimes I go along to watch. I don’t want to exclude myself more than I have to, but watching from the promenade inevitably brings back bittersweet memories of what I used to be able to do.
When I heard about the accessible beach day, I knew I had to go.
Going from just watching to being in the water was nerve wracking
I’ll admit, I was nervous. Would the beach wheelchair work for me? Would I feel safe? The idea of getting into the water again felt both exciting and daunting. The volunteers were incredible from the moment I arrived though, and their reassurance eased my nerves.
As they wheeled me down the beach, I could feel the change in texture under the wheels as we left the pavement and hit the sand. For the first time in a decade, I was heading straight for the water, not just watching from afar.
The feeling of freedom
The moment the sea touched my skin it was like a memory came rushing back. The cold water took my breath away in the best way. I could feel the salt on my lips, hear the laughter of others in the background, and feel the sun warming my shoulders.
“It brought back a deep sense of freedom I hadn’t felt in years. For a few beautiful moments, I was reliving an experience I didn’t know I’d be able to have again, and to share that experience with my wife made it even more special.”
I don’t know how many more opportunities I’ll get like that, but I’m delighted I did it and I’ll carry that moment with me for a long time.
It wasn’t just a swim. It was a return to something I love, to a version of myself I thought I’d lost, and to a community that reminds me I’m not alone.
Why days like this are important
Living with a progressive condition doesn’t just impact the body — it affects your mental health, too. Over time, you can start to shrink your world to what feels manageable. But opportunities like this beach day expand it again and uplift you.
The experience reminded me how crucial support is. It’s not just about having the right equipment, but about having people who genuinely care and understand. The volunteers were brilliant. They didn’t just help me get into the water — they made me feel like I belonged there.
Even getting down to the beach would have been impossible in my power chair, but with the beach wheelchair and the right people beside me, the barriers were removed.
Support from Muscular Dystrophy UK and the community is so helpful
I was previously very involved with Muscular Dystrophy UK, but lost touch during the pandemic. Since the Northern Ireland Advocacy and Information Officer, Graham, joined the charity, I’ve reconnected, and it’s made a huge difference.
“Graham’s currently helping me fight for a new wheelchair. My current one is 12 years old and I was recently told it can’t be serviced anymore because it’s so old. Thanks to Graham’s persistence — emailing the right people, advocating on my behalf — I’m hopeful for a positive outcome.”
Being part of Muscular Dystrophy UK again has reconnected me with a wider community too. The Muscle Group I’ve attended has been amazing to meet people with similar yet different experiences. We exchange advice, swap ideas, and learn from one another. It’s all incredibly valuable.
