Peer Support Volunteers who have a partner with a muscle-wasting condition

These peer support volunteers all have a partner who has been diagnosed with a muscle-wasting condition. Below is a list of volunteers who have this experience and are here to provide you with support and advice. We will be adding more volunteers to this page once they have completed their training.

For more information or to get in touch with someone please contact the information team.

About me: Following a career in teaching I am a school governor at a local special educational needs school which keeps me in touch with education. I love to go into school and spend time with the young people, many of whom face considerable challenges.

I enjoy reading and going to the theatre and particularly love to travel. I have been lucky enough to travel widely at home and abroad with both my late husband and a wide circle of friends.

Why I became a peer support volunteer: My husband Chris was diagnosed with Myotonic dystrophy in his late twenties so I feel I know something of the challenges faced by both those living with muscle wasting conditions themselves and those who share their lives. For me there were many times when a listening ear or sounding board was essential – I would hope to be able to offer that to others.

Top tip try not to let your condition stop you from doing what you want to do or being what you want to be.

About me: I enjoy spending time with my husband and our daughter at home or out and about skiing, running, cinema and holidaying together. I also love spending time with my friends having dinner going to the theatre or, as is becoming more regular, participating in sporting events such running, duathalons and triathlons.

Why I became a peer support volunteer: My husband with diagnosed with Myotonic dystrophy in 2011 and to say it was a shock was an understatement. Our world shifted and we know what we know, but also still have no idea what we don’t know or what the future holds. We have learnt a lot and already experienced quite a few very challenging and emotional times. I hope by being able to share some of our experiences I may be able to help others to make informed decisions. There is no cure and often no treatment, but I believe that a shared knowledge can often offer some comfort.

Top tip Matthew’s moto is ‘do what I can while I can’ and I really admire him for this. He’s a positive, strong, capable man who grabs opportunities. My advice would be to seek help but also to keep enjoying what you have, health, family, opportunities and adapt when the need arises. Embrace change and get used to enjoying activities and lifestyle in different ways as your circumstances alter.

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