Charcot-Marie-Tooth UK
1,212 members492 posts

Now I understand

I had my diagnosis of CMT when I was 13 and it is not until now, 33 years later that I finally realise how it has always affected me.

Last night my husband and I took are 2yr old little dog to the beach for a walk. this was the first time in my life that I have EVER enjoyed a walk on the sand...because it was my first time with two splints. I was able to actually 'walk' beside them both, without worrying about falling over, or concentrating on the tilt of the ground, and only walking a short distance due to the extreme hard work of being able to walk.

This has been a revelation to me, a good one, but i now realise what I have missed out on all these years. I've never considered myself disabled before, but being able to suddenly walk 'normally' at 46 years old, has made me realise that exercise can actually be fun.

I won't resist help when it is offered to me again - i withheld getting my splints until I was having trouble walking more than a few steps without either falling or being knackered...don't make the same mistake. Take help when it is offered as it might just make you 'more' abled than 'dis' dabled.


2 Replies

Good for you, Karen - you're dead right - sometimes refusing help is rather short-sighted, but you have to know when the time is right for you to be able to open your eyes to the help that's around. And thank goodness, there is a lot we can do to make our lives better and easier.

CMT isn't the end of the world, and it's up to us to find the right way to cope - for us. It's all very well for us to say "you should do this, or that" - it might not be right for you!

If you haven't already done so, I'd also like to recommend joining CMT United Kingdom - to join the hundreds of us who have "been there, done that and got the t-shirt" and can help with any other advice and help that you might need!



I do understand why some CMTers put off using splints, or walking sticks or any aids really... it can feel like you are admitting defeat when in reality the opposite is true! You are FIGHTING BACK! You are doing everything you can do keep going and make life easier.

So yes, good for you!


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