Peer Support Volunteers who have muscle-wasting conditions

This group of friendly peer support volunteers all understand what it is like to be diagnosed with a muscle-wasting condition themselves. Below is a list of volunteers who have this experience and are here to provide you with support and advice.

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

About me: I’m an Engineer who now works in staff training and I have limb girdle muscular dystrophy. I enjoy socializing, watching TV box sets, going on local walks, and I love my gadgets

Why I became a peer support volunteer: I would have liked to have been offered help and advice from someone that had been through a similar experience as I have when I was diagnosed

Top Tip: Keep doing as much as you can for as long as you can. But don’t overdo it! People are always willing to help if you just ask.

Fun Fact: I’m so forgetful that my wife calls me Dory from Finding Nemo.


Hobbies/interests: I enjoy watching live music with my two grown-up sons and my family are Villa fans through thick & thin! My wife Catherine and I enjoy holidaying and holding themed dinner evenings with our friends.

Why I became a peer support volunteer: With first-hand experience of living with OPMD, a rare muscular dystrophy, I would like to support others with the complexities of obtaining diagnosis as well as the potential for misdiagnosis and interacting with healthcare professionals who often have limited or no knowledge of neuromuscular conditions.

Top tip: Only set yourself realistic goals and ensure there is built in “me time”. Don’t be afraid to accept the support of others particularly family and close friends.

Fun fact: I once sang Christmas carols with the Led Zeppelin front man Robert Plant. He thought our “fundraising carols” needed vocal support when we turned up outside his local pub.

About me: I was diagnosed with LGMD2B in 2015 after many years of misdiagnosis and I have been a full time wheelchair user for the past year and half.  I play wheelchair rugby with the Caledonian Crushers and in January 2015 I became the assistant coach and also a player with the Glasgow Panthers Rugby League club.

Hobbies / Interests I have also started doing rowing for more fitness and we’ll see where that takes me in the future. I also enjoy cooking and taking my two dogs for walks.

Why I became a peer support volunteer: I had no support after my diagnosis 10 years ago and I found that really hard. I want to be there for newly diagnosed people and their families to give them someone to talk to. I feel like I have something to offer in helping people as I’ve been there too.

About me: My interests are animals, wildlife and photography. I support and sponsor animals in a number of rescue centres, and visit with my camera as often as I can.I also enjoy live music and go to gigs and festivals throughout the year.

Why I became a peer support volunteer: I want to become a peer support volunteer to help others at the time of diagnosis.I felt quite isolated, when I was diagnosed with congenital myopathy, and would have benefited from having someone to talk to who had been through a similar experience. I’m also aware that getting a diagnosis can be a lengthy and frustrating process, and sometimes we don’t get a definite answer.

Top Tip: Be creative, if you feel you can’t do something, try to think of a way of doing something differently to achieve the same goal.

About me: I was diagnosed with limb girdle muscular dystrophy in early 2015. I currently work part time for The National Trust, I have several hobbies but I’m really keen on motorbikes and racing and love to ride pillion with my partner.

Why I became a peer support volunteer: I’ve always maintained that I would have a positive attitude after my diagnosis and becoming a peer support volunteer is a great way for me to be able to help others in a similar situation.

Top Tip:  nothing is impossible – you just may have to find a different way to do things!


About me: My name is Houston Watson. I am 41 years old and have Limb Girdle Type 2B muscular dystrophy. I live independently and drive.

Hobbies / Interests: I enjoy Aqua Jogging, going to the gym, travelling and acting.

Why I became a peer support volunteer:  I feel I have empathy, good listening skills and a personality which engaging and can help others. Remember you are you! Don’t let muscular dystrophy become you.

About me:  I have congenital myopathy, having initially been diagnosed with limb girdle muscular dystrophy.  I enjoy reading, listening to music and getting together with friends.  I am involved in church activities and am doing a course to learn about being naturally supernatural.  I also exercise as often as possible; when I don’t do any, I notice the difference.  I am also involved in Muscle Groups and Neuromuscular Forum meetings with Muscular Dystrophy UK as well as the Joseph Patrick Trust committee which helps people fund equipment. 

Why I became a peer support volunteer:  It helped me to speak to others and to know that they were doing okay.  Although everybody reacts differently, at some stage in the process it will help to speak to someone who knows what you are going through, who can empathise with you and just listen.  Sometimes that’s all some people will need – someone who understands to listen to them.

Top tip:  90% of the battle takes place in your mind, so it helps to have a positive attitude.  Concentrate on what you can do, not on what you can’t.  Enjoy yourself as much as you can – a sense of humour helps.

About me: I was diagnosed with Myotonic Dystrophy in 2006 and got involved with Muscular Dystrophy UK because I was angry about the quality of care my Dad received. I also run a support meeting for the Sheffield area in connection with Myotonic Dystrophy Support Group. I am married to David and we love to travel. I recently discovered the wonders of a motorhome when on holiday in New Zealand and we are now completely mad about them! I am always researching the next holiday and saving up to pay for it.

Why I became a peer support volunteer: I want to do all I can to help people when they have been diagnosed. I remember exactly how that felt and my need to find out all about it so that I could somehow get some control back over my life. I remember finding out about the support that I needed that should have been afforded to my Dad and I want to help people at this point in their lives so that they get what they need and feel that they have someone to turn to who understands what they are going through.

Top tip:  Never accept a ‘no’! Persistence is something you will need in bucket loads. But don’t worry if that sounds hard, there are always people on hand that can help you and join forces.

About me:  Now into my 40s, I live in Surrey with my wife, daughter and son. I have a passion for all things science and nature, and enjoy getting out into the countryside whenever possible. I run my own business in electronics and software design. 

Why I became a peer support volunteer: When I was diagnosed with a rare form of muscular dystrophy there were many worries and open questions that it was hard for healthcare professionals to answer.  I was helped through some of these by my elder brother who also has muscular dystrophy, and I, in turn, would like to help others.

Top tip:  It can be harder than it sounds, but never be shy to ask for help with physical tasks.  A lot of frustration can be built up and energy wasted pushing your physical limits.  Instead, a moment of embarrassment asking a family member, friend, or even a stranger quickly passes.

Hobbies/interests: My main hobby is stand-up comedy and I talk about my condition on stage. I hope to spread a bit of awareness and knowledge about this rare condition. 

Why I became a peer support volunteer: I became a peer support volunteer because I hope that through my experience I can help people to deal with this condition especially in the first stage when they just discover they have it and transfer my positivity.

Top tip: Find a way to do things – do not let the condition stop you living a “normal” life!

About me: I am a father of two and grandfather of 4 and a fan of old films and motor sport. My as yet undiagnosed muscle wasting disease only came to light later in life and has so far resisted all attempts at labelling.

Why I became a peer support volunteer: Last year I joined the East Midlands Neuromuscular Forum to help ensure the patients’ views are taken into account when NHS managers and Clinicians are making decisions on service development.  Browsing on Facebook I noticed that there were several comments about people feeling alone after initial diagnosis so I was pleased to be able to volunteer when the Peer to Peer Support program was started. It helped me to talk to other people so I hope I can be of some help to others.

Top Tip: Muscular Dystrophy UK’s website revealed the existence of local regional meetings. There I found that talking with others who have similar conditions gave me a much better understanding of the issues and where I stood.

Hobbies/interests: I like reading, comic books (anything to do with superheroes), playing video games, binge watching TV shows, meeting friends and blogging.

Why I became a peer support volunteer: I wanted to be a peer support volunteer because my aim in life is to help people realise their potential. Studying Psychology at university has helped me to understand myself so that I can better help others.

Top tip: Stay positive and focus on how much you can do!

Fun fact: After watching Jurassic Park as a child I used to think velociraptors were chasing me anytime I was outside.

 

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

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