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“I use my life experiences to support others in the community” – being a Peer Support Volunteer

Joan has been receiving support from us for over 40 years. To share the wealth of knowledge she’s gained about living with spinal muscular atrophy (SMA), she became a Peer Support Volunteer for the charity.

A women wearing a pretty summer scarf sits in the sun

In my early teenage years, my GP recommended I contact Muscular Dystrophy UK. I wasn’t sure how the charity could help me, but I was pleasantly surprised. At 57 years young, they have supported me in so many ways over the years. They are like a second family; always there in the background, available at any time if I need help.

I’ve made friends for life through Muscular Dystrophy UK

I’ve gained so many friends through my involvement with the charity. When I was younger, I went on holidays to beautiful locations like Malta and Tenerife, organised by the charity. It was amazing to meet so many people with different types of muscle weakening conditions, their families, and personal assistants. These trips allowed me to find a new sense of freedom and independence, and I still have lifelong friends from those days.

Getting to know people in the community and sharing life experiences has also given me more confidence. I’ve been living on my own now for just over 15 years with the support of personal assistants, and I absolutely love it! I don’t think I would have done that without the connections I’ve made through Muscular Dystrophy UK. I couldn’t imagine the charity not being there. It’s something that’s part of me.

Becoming a Peer Support Volunteer

When I was younger, I never saw older people with muscle wasting or weakening conditions.

“It would have really helped me to see people living independently, working full time, travelling, and know that I could too. I want to give that to others.”

People might think I’m old, but for most life experiences I can say I’ve been there and done that, and I can share what I’ve learnt.

I received lots of support when I first enrolled as a Peer Support Volunteer. I took part in interesting training sessions where volunteers meet each other, share life experiences and learn about the role.

I learn just as much from the community as they learn from me

I’ve been speaking with a young woman for over a year who initially just wanted someone to chat to who understood where she was coming from. We chat regularly now about anything that’s troubling her, but we also have a laugh and sometimes just talk about our boyfriends or just casual things such as going to concerts, meals and shopping. It’s also been great to discuss our experiences of being on the new treatment for SMA, Risdiplam.

She was struggling with her office at work not being suitable for her needs. I shared my own experiences of working and discussed how things could be made easier for her. She now has automatic doors and a height adjustable desk in the office which has helped her to carry on working just like anyone else; no more barriers. 

I’ve supported several other people as well. Some people have a specific question, such as hearing about my experience of being on treatment for SMA, and others are looking for more emotional support. Lots of people feel nervous about having a phone call so we can communicate over email or text. I do whatever is best for the person.

Sometimes I’m paired with people who also have SMA, but I speak to people that have all kinds of muscle wasting conditions.

“I find this really interesting and learn just as much from them as they do from my knowledge and experiences.”

Find out more about how you can become a Peer Support Volunteer here.

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