I volunteer at Maidenhead Community Centre helping elderly people to do activities, which is really rewarding. It’s quite a challenge finding funding for things like that because it’s not as freely available as it used to be. We have to rely on the support of volunteers, so I try and attract them.
I help out with some of the activities like bingo myself, which is quite fun, and I just try and promote the centre. The Royal Voluntary Service still have their office there so I help out with them as well, finding people to go out into the community and spend a few hours a week with a pensioner. I also give people computer lessons, teaching them how to do simple things like using Facebook.
I use a wheelchair with power rims which gives me a lot of independence. I use my arms to push myself, and I can also drive my car, although I need help getting in and out because it’s not wheelchair accessible.
I’m struggling a bit more than I was, so I think my upper body strength isn’t as good as it was when I first got the chair in 2009. But I’m very independent. I use public transport quite a lot to go to London. I got involved with Muscular Dystrophy UK’s Trailblazers to campaign for better access to transport.
To keep fit, I go swimming about once a week, which is good for my arms. I would tell people who have just been diagnosed not to be afraid to carry on with their lives as well as you can. Going into a wheelchair can feel frightening, but it can actually give you a lot more independence. It’s important to keep walking for as long as you can, but if you are falling a lot then using a wheelchair is the right thing to do.
People are willing to help you, but also you shouldn’t be afraid to do things on your own. It’s important to campaign for the things that you believe in. In my lifetime, I’ve seen things improve with access to transport which is really reassuring. It’s good to know that the campaigning does work, and it shows that it’s worth doing.