I have a degenerative neuromuscular condition called Charcot Marie Tooth Type 3 which is basically a muscle wasting condition which I have had since birth. At an early age and with the support of my amazing family I decided it’s probably not a great idea to let it stop me from doing the things that I want to do. Don’t get me wrong there have been times when I thought it would stop me, but in the end, it hasn’t.. This year, I will be 53 years old which means I would have been 22 in 1990 when The NeuroMuscular Centre opened. God I feel old! Throughout my life I have been fortunate to have some amazing influences. It begins with my Mum and Dad, Brothers, Sisters and my lovely Husband Mark. All of them have given me great love, support and the tools I needed to get through life. They’ve enabled me to become the productive human being that I am today. As well as my family, I have my NMC family whom I have been lucky enough to be part of from such a young age.

I left school at 17 and went on to do a couple of years in college doing a business studies course. It was a difficult couple of years because at that time I was going off my feet and my wheelchair was becoming a permanent fixture. Everything did seem quite bleak because I didn’t actually believe I would ever have a working life. 

After college, I attended a day centre for a couple of years and during this time I was transferred to a muscle clinic in Liverpool where I met a wonderful man called Prof Edwards. He turned out to be the person who opened the door to a new chapter in my life. I explained to him how I was feeling a bit sorry for myself having gone off my feet and how basically I just didn’t have a vision of what my life would be. Prof Edwards was famous for his metaphors and he shared something with me that I will never forget. He told me to imagine that I am the captain of a ship, that I am in charge and whatever destination I set my mind on, I need to navigate my way there however rough the waters may be. If I steer in the wrong direction, I need to put it right and if I get to my destination, I will have a great life. I can safely tell you on good authority he was right!

Prof Edwards and family care officer, Pat Murphy steered me in the direction of The NeuroMuscular Centre. How lucky was that! On my initial visit I met the NMC founders Sarah Kelly and Kate Fox. These two ladies set me on my course. The charity they created gave me physiotherapy, work experience, support and employment. All the things you need to overcome this neuromuscular condition. They also gave me self belief and enabled me to achieve more than I could have dreamt of. Initially, I worked on reception, did thank you letters to the donors and literally gained a huge feeling of confidence because they believed in me. I also accepted that I wouldn’t be able to stay on my feet but with physiotherapy I could keep well and healthy.

The initial 13 years that I worked at the NMC, I went from strength to strength. I was involved in fundraising events, doing administration work and made some of the best friends I could ever wish for. One day, I was invited to a cheque presentation at BT contact centre where I met a great friend of mine called Caroline Weaver. Caroline had known me for many years and she suggested that I should apply for a job in open employment. I agonised over the decision to apply and I couldn’t believe it when I got the job. NMC had given me the wings to soar into open employment and I loved it. Every week, I went back home to the NMC for my physiotherapy and I did that for 16 years. There is no way I would have been able to hold down my job at BT without that support. It was vital to be keeping well to be able to work.

Then, something magical happened. I saw an advertisement for Transition Officer at The NeuroMuscular Centre. When I looked into the role I discovered it was about empowering and raising aspirations for young people with neuromuscular conditions. I just thought, how brilliant would that be to return home to the NMC and share my experiences with the young people who are just starting out like I was all those years ago. It was an opportunity of a lifetime that I just could not miss. I applied for the job and was so lucky to be put in post. I’ve been back home now for just over a year and it has been the best.

Those of you that know me well will know that there are four things that keep me going. Positivity, humour, my family and NMC. I have the occasional meltdown, shed  the occasional tear in the shower but when the chips are really down there’s always a kind NMC Family member who is there for me when I really don’t want anybody else to see. It’s a place where it really is okay not to be okay and it’s a place where you can find the resolve and find the solution to your problem.  NMC oozes like-minded people and has a team of fantastic professionals who help you find your way.   

When I lost the ability to walk, I realised it was important to be well, NMC taught me that. When I couldn’t hold a pen any more or use a keyboard, NMC helped me to overcome this with the introduction of voice-activated software. When my breathing started to fail, the NMC physios picked up on that and referred me to a breathing specialist for night ventilation. When my hearing failed, NMC picked up the pieces and supported me through the loss that I found extremely difficult to come to terms with. Over the last six months, I am now on full-time ventilation and NMC still believe I can do a good job despite the obvious difficulties that that entails. They’ve helped me to keep looking forward and do the work I was meant to do.

I’ve learnt quite a few things from my time here. Firstly, there’s no point worrying about what you can’t change.  Secondly, only worry if you could have changed it and you didn’t try. If you try and you fail, then at least you tried. This is what I try to instil in the young people I am lucky enough to spend my days with.  Help me keep it going for them and many more families to follow in the future.  They are all incredibly  deserving and just need that little bit of help that goes such a long way! I am living proof of this. Let’s keep it going and support us if you can. Even sharing this post will help other people to see the potential that they may have. Other people may even see the potential to start another NeuroMuscular Centre.! Let’s keep that positivity wave rolling! Happy 30th Birthday NMC :-) I got to sail my ship!