Lisa receives support from Graham, one of our peer support volunteers. When Lisa was first diagnosed with oculopharyngeal muscular dystrophy (OPMD), with no family history of the condition, she felt isolated and unsure where to turn. Since receiving support from Graham, this has changed. They chat about what it’s like having the same condition, the challenges of this as an active person, and any questions Lisa has about OPMD.
“Receiving peer support has changed my perspective about my condition – I learnt I didn’t need to feel alone”

I’ve always led a very active lifestyle, enjoying the gym and hiking. Being outdoors and walking have been a passion all my life, not just for getting from place to place, it’s a hobby for me. So, when I was diagnosed with 0PMD in 2023 at age 57 and told to take it easy due to inflammation of my muscles, I had no idea what to do. I was given no support and left feeling isolated and scared of making my condition worse.
“Having undertaken my own research, I discovered Muscular Dystrophy UK, and, although it took me a while to contact them, I’m so glad I did and wish I had done so sooner.”
Receiving peer support – Lisa’s story
I was apprehensive about contacting the charity, as felt I may be met with a lot of depressing information. But I couldn’t have been more wrong; everyone at Muscular Dystrophy UK is so positive and friendly.
I was put in touch with a peer support volunteer – someone from the muscle wasting community who had the same condition as me and could answer any questions I had, as well as hear their own experiences. This was when I met Graham.
“It was amazing to chat to somebody who had been where I was, in the early diagnosis stage, and had come out the other side. I spoke to him about my feelings and my struggle to adapt to my new lifestyle. Being able to open up without judgement was such a freeing process, but I also learnt that I didn’t need to be so scared.”
Graham had always been an active person, like me, so he was able to chat to me about the lifestyle changes he’d made, and that keeping active was important. He also provided me with details of the Neuromuscular Centre in Winsford, for further support.
I’ve been speaking to Graham for almost a year now and we’ve become good friends. We speak on the phone every few weeks and often simply chat about our lives. We’re able to laugh together about silly things that have happened because of our condition, like bending down in a supermarket and struggling to get back up. It’s helped immensely sharing the highs and lows with someone who understands, and I’m able to look at things from a different perspective now, and I am so thankful for that.
Being a peer support volunteer – Graham’s story
I’m almost 60 and was diagnosed with OPMD seven years ago. I’m lucky to still be in the early stages of the condition, but I know this won’t always be the case, so I retired from my professional career three years ago to do more of what I love, whilst I’m still able to.
I started to learn more about my condition and realised that I could share this with others by becoming a peer support volunteer – it’s been a great way to help others in the community and also for me to learn more too. I’m here to chat, but most importantly to try and help people feel/realise they’re not alone in what they’re going through. I find it helps people when I share my own journey and what I’ve learnt so far too.
I’m keen to share that there can be a positive aspect to being diagnosed with conditions, like OPMD, when you’re in the early stages. For me, I’ve always had a passion for cycling, adventure and “seizing the day”. It was on my bucket list to do a long ride, so after being diagnosed, I decided to fly to Morocco and cycle back home to the UK. My employer agreed to my time-off (thank you) and I had an amazing six-week adventure cycling home. I’m not physically able to cycle that distance anymore, so I’m glad that I did it whilst I had the chance. I use this to encourage people I’m supporting to look at things from a different perspective once they’ve started processing their diagnosis. It can be a tough time, but also an opportunity.
“If you want peer support, the process couldn’t be simpler – there’re no forms to fill in and no commitment to being paired with someone for a specific length of time.”
You simply ring up Muscular Dystrophy UK and say you’d like to talk to someone who can understand what you’re going through. That’s when a volunteer would get in touch. We can just discuss a few specific questions or chat more regularly if you feel it’s helpful… remember, you are not alone.
Request to speak to a peer support volunteer
If you would like to be paired with one of our peer support volunteers, fill out this form and we’ll match you with the most suitable volunteer for your specific situation.
Once we’ve found a match, we’ll contact you to let you know more about who your peer support volunteer will be. If you’re happy with the match, we’ll then pass on your details, and they will email you.