By Natasha Sweet | Muscular Dystrophy Support Centre
“My name is Tao. I started coming to the Muscular Dystrophy Support Centre in 2015 aged 22. I have Mini Core Myopathy, a rare form of muscular dystrophy, and my mobility had really deteriorated. I have physiotherapy or hydrotherapy once a fortnight and occasionally osteopathy.
Therapy makes such a difference. I used to be in a lot of pain but I hardly have any pain any more. I am more flexible, and my core strength and balance have improved. Now I have a much better understanding of my condition. I have grown in confidence and rely less on my friends and family now. They can see the positive difference coming to the Centre has made.
At 24, buying an electric wheelchair felt a bit like I was “giving in” and going backwards. But Ulrike (the Centre’s lead physiotherapist) helped me see things in a different light; saying “it conserves my energy, that I am not giving in, I am using it to enable me to do more and go forward, without restrictions.” This helped me so much. I had a hoist fitted to my car so I could take my wheelchair out alone. For the first time in months, I was independent again.
I’d always worked as a care worker, but it became too physically demanding and I ended up being off sick for 10 months. I didn’t like not working, so I started to volunteer. I began using my wheelchair, so I could come independently. I helped with admin, learnt new things, and felt useful for the first time in months. It built my confidence so much I decided to use my wheelchair at my next interview, something I would never felt comfortable doing before. I had several more interviews before landing my dream job as a children’s telephone counsellor.
I am just so grateful for all the support I get from the Centre. Now, at 25, I’m starting a career I have always wanted, and I am happy and excited about the future.”
Unfortunately, Tao is one of the “lucky ones” when it comes to physiotherapy access for those with MD. She is able to get the treatment she needs. This is denied to most people with muscle-wasting conditions, as regular therapy just isn’t available.
This is why we’d like to take the opportunity to say THANK YOU, to you, as one of our generous donors, for helping us take our first step towards a toolkit that can change this forever. As you know, the first tool in our toolkit will be a short film demonstrating our therapy model. We are actively raising funds to fill the shortfall at the moment, as we need to reach our goal of £3,750 ($5,000) to fund filming and production costs. Once we are successful in this, we will begin work on our film in 2019.
Thank you for being a part of this and helping us to make it happen!
#strongerforlonger
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