Becker Muscular Dystrophy week

David Cryer

This week is Becker Muscular Dystrophy Awareness week.

Becker Muscular Dystrophy is a rare muscle-wasting condition affecting around 2,400 children and adults in the UK. The condition is caused by the lack of vital muscle protein and leads to muscles weakening and wasting over time. The impact of the condition varies from person to person and people living with Becker Muscular Dystrophy may struggle increasingly with walking quickly or for long distances and with climbing stairs.

Most will eventually need to use a wheelchair and some will be at risk from breathing and heart problems.

David Cryer, 44, from Rochdale, has Becker Muscular Dystrophy. David, a farmer, has been involved in fundraising for Muscular Dystrophy UK for about nine years and often attends regular support groups for people with muscle-wasting conditions.

David is now embarking on a new role as a peer support volunteer for the charity and is talking about his condition and how it affects his job on the family farm and the importance of supporting other people with the same condition through the peer support network.

David said: “I was always the slowest kid at school – I could never run fast, jump high, or climb far. When I was little I remember excitedly saying to my mum, ‘look at me’ when I was jumping off the second step in the playground. All the other children were jumping off of steps that were much higher, but I didn’t notice at that age.

“I had always wanted to follow in my dad’s footsteps and become a farmer. It wasn’t until I was studying agriculture at college, when I was bending down, practising sheep shearing, that a teacher noticed something wasn’t right with my posture. That was when I went to the doctors and was diagnosed with Becker Muscular Dystrophy.

“I was 19-years-old when I was diagnosed and there was no support available. My family and I didn’t understand what Becker Muscular Dystrophy was.

“I successfully completed my college course and spent a few years working with my dad on the family farm. As time passed things were getting more difficult for me and my dad had to do all of the heavy lifting. Things that I once took for granted started becoming a challenge – bending down to put socks on, to name just one thing. The past six to eight months have been very tough and walking is becoming increasingly hard for me.

“I still work on the farm but I run things from the business side and I use a power wheelchair to get around the farm. I love looking at the animals and helping out where I can.

“I’ve been supporting families and individuals with muscle-wasting conditions for a number of years through a Facebook group and I’ve talked to people from as far as the USA and Canada. I started doing this after my cousin’s sister adopted a boy with Duchenne Muscular Dystrophy, who died when he was 19-years-old. I was devastated but realised I wanted to help other people like him who have muscle-wasting conditions. People want to hear from those who have been through similar experiences, not just health professionals.

“I’ve known about Muscular Dystrophy UK for some time. My mum has been supporting the charity for a number of years and I joined the North-West fundraising group about nine years ago. Last year I went to the charity’s National Conference and after that, I started attending regional support groups. That’s where I first heard about the peer support network and decided to get involved.

“I am doing peer support volunteer training at the moment and I’ll start supporting people soon. So far we’ve learnt about signposting, how to deal with different situations, learning to read between the lines and understanding different behaviour.

“The next stage of training will involve role play, where we will practise talking to people. Peer support volunteers will have a liaison officer to offload and speak to about difficult and sensitive issues.

“I am looking forward to giving something back to Muscular Dystrophy UK as a thank you for the support I have received from them. But most of all I want to help people through their problems and give them the support that they deserve when they have received a life-changing diagnosis.”

Muscular Dystrophy UK’s peer support network will help people who have recently been diagnosed with a muscle-wasting condition and those at other stages of their journey. Support will also be available to families of those affected. Volunteers have a range of experiences and they – or a family member – are living with a muscle-wasting condition themselves. The support they offer covers a wide range of conditions and ages.

Find out more at:

http://www.musculardystrophyuk.org/news/peer-support-for-recently-diagnosed-people/