Help with CMT.

[CMTUnitedKindom]

Good morning to our fellow CMTer.

I would like to introduce the team here at CMTUK. I am the information and Support Advisor and apart from all the training I receive, I have CMT myself and understand the problems one can have on a day-to-day basis. Chris, Lisa, and Simon our CEO are all fully trained to answer any questions you might have. If you need advice or would like a friendly chat with any of our team? Please call our helpline on 01202 474203 between 9am-2pm Monday – Friday or email [e-mail].

We are here to help.

[Mummytothree]

Thank you! It’s nice to know that there is someone on the end of the line in case I have a bad day and need help or just someone to talk to. We all have good and bad days and sometimes a feeling of loneliness, so it’s really great to know someone’s out there xx

[Need-a-stick]

Good morning,

Have too say struggling a bit of late..

It’s getting a lot worse a lot quicker than I imagined it would.

I hit 50 and it’s been like a wrecking ball, not far off 55 now and the deterioration in more and more noticeable. My balance is the worst followed by all the other stuff in close second.

At the stage, of going too the doctors and ask for advice on work… But as I am sure you are all aware, CMT comes from the moon when it comes to GPs..

I wanted too on until at least 65 so I could set myself financially, unfortunately this is no longer possible as I am becoming more and more unsafe on my feet. There’s two main concerns, safety being first of myself and others, then the pain, cuts and again all the other joys it brings.

I try my best to make light of it, but after this amount of time it’s getting harder.

The biggest and what’s probably effecting my mind most, is the when do you stop!!!

Is it when you are no longer too walk and then there’s just sitting in a chair relying on others?

Or do you stop and have possibly a couple of years where you are still able to get about, even if you’re taking a few dives onto the tarmac or grass a day?

Apologies if this seems low, it’s just a difficult time at the moment

[CMTUnitedKindom Partner in reply to Need-a-stick]

Good afternoon,You have mentioned your balance has got worse, do you wear orthotics? if you do when was the last time you had them changed? A physiotherapist can help with balance problems, please request an referral from your GP. We can help you with work related issues and we are all ways happy to talk to employers regarding the needs one might need. We can help with advise on many problems with having CMT and point you in the right direction for Help. Please can you call the office on Monday 01202 474203 it would be lovey to talk to you.

Kind regards.

Kim

[Ladywonder in reply to Need-a-stick]

I know exactly how you feel I am 56 and seem to trip and fall alot more my drop foot is getting alot worse and don't ever stop moving I now use a cane or walker if I'm going for a longer walk and noone will be around to help me if I fall. If I'm unsure of myself on doing something I just don't do it pretty much have a little meltdown cry then move on. I'd continue working as much as you can or hopefully your employer can find another position for you to work at. I have always been a stay at home wife and mother farmer etc. I find jyst basic life tasks is much harder I have had 2 broken legs different years also a hip replacement my one leg is now half inch longer and my balance is horrible . But I jeep on moving just more cautious and don't be afraid to use aids better than hurting yourself and not beagle to get up and move. Nobody will fault you you will actually look back and wonder why you just never used a walker or cane to make movement easier

[Need-a-stick in reply to Ladywonder]

Well hello, to my fellow falleroverer…

Thanks for your words of wisdom, i would like to say it’s nice that someone else understands but I wouldn’t wish it on my enemies.

Took a massively big step forward today and I have spoken with someone about my mental health, feeling slightly strange opening up to someone for the first time… Both, revealing and encouraging with a massive twist of I don’t know what…

Stay safe Ladywonder, ever want a moan, seems like a good place.

I will call Kim tomorrow and hopefully get some advice on work stuff, thanks both.