To help celebrate the NMC’s 25th anniversary, I am taking part in MUSCLE MONTH during the month of May. I will be participating in a team event to complete a marathon with a difference (a total of 26.2 miles) a mile for every year, plus that extra mile to celebrate the anniversary. I will be walking my stint using the EasyStand Glider (adapted cross trainer). Others are cycling using arm or leg pedals and swimming

I was diagnosed with Muscular Dystrophy – Facioscapulohumeral Dystrophy to be precise about 10 years ago. On confirming the diagnosis the specialist told me that if I was going to get MD then FSDH is ‘probably the best one to have’. I think he was trying to make me feel better! 

Over the past 10 years my symptoms have increased, my mobility has worsened and I’ve gradually emerged from a prolonged period of being ‘in denial.’  I was referred to the Neuromuscular Centre, in Winsford, Cheshire - a charity specialising in helping and treating people with all forms of MD. Originally I attended every 3 months and this has increased over time and I now attend every other Friday for physio.

I look forward to my visits but I’m not going to lie, living with MD can be a bit rubbish! It’s not necessarily what I would have wished for myself. It does mean that I have to think about stuff that I used to take for granted. Making decisions on things like choosing clothes, shoes, a new car, places to visit, which chair to sit in, where to park and even brushing my hair are all impacted on by my physical limitations and it can be frustrating, painful at times and everything takes a lot longer!  Being a tad stubborn and determined helps but, to be honest every set of stairs feels a kin to embarking on scaling the north face of the Eiger and no matter how much positive thought I can muster an escalator is unlikely to appear! Of course, I want you to sponsor me so I’m not going to say that life is a bed of roses. On the other hand, this isn’t about sympathy. I am acutely aware that most people on this planet face challenges in their life at one time of another, many much more severe than mine.  I believe in getting on with things, after all what's the alternative? Having MD isn’t going to stop me. Like all of us there are things I want to do in my life and I have every intention of doing them!

So my life might be less spontaneous than it could otherwise be but I’m the sort of person that plans for spontaneity anyway J. FSHD doesn’t define me and it has certainly made me appreciate a lot of things I previously took for granted, not least, how inaccessible places can be and that is something I plan on making a difference to. But mainly, it has made me realise how lucky I am to have such fabulous and supportive friends, family and work colleagues and I am truly grateful to you all for everything you do to help me.

I really value the help and support I’ve received from the team at the NMC. It truly is a wonderfully positive place and a lifeline for many who attend. I want to take part in this challenge to say thank you and help support their future plans for an even better centre.

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