is there any info that i can get on how cmt affects day to day living ?

[markiedee82]

[CMTerSam Volunteer]

Hi markiedee82,

Take a look at the CMT United Kingdom's "About CMT" Section which can be found at the following link:

cmt.org.uk/about-cmt.php

This will give you info about CMT, how it affects you, and what can be done to manage the condition.

If you have any particular questions about how it affects you or anything else just ask.

Sam

xxxx

[markiedee82]

thanks but it wasn t much help

[CMTerSam Volunteer in reply to markiedee82]

As Karen has replied, everyone is different... all we can do is provide you with the literature on how CMT affects those with the condition (which I did above), and then be there to answer any specific questions you have about problems you are having.

Do ask away if there is anything specific you were wanting to know

Sam

x

[Alioops78]

For me it depends on the day as there are really great days then really bad days and although you might have the same cmt type as someone else the way your body copes with it is completely different to how say my body copes. I have a lot of muscle spasms in my back and also a lot of problems with my arms and hands whereas you could have more mobility problems. I don't think that there can be any specifics of what to expect unfortunately you just need to get to know what will affect you and work around it.

Good luck

[CMTUnitedKindom Partner]

I think the trouble is, CMT affects us all so completely differently. Some will only have the fairly minor annoyance of sore feet or legs after a full days work, others will be in agony, others can't work at all. Some walk reasonably unaided, others are wheelchair users - and any range in between.

So there is no one answer to this question. It's entirely personal based on how it affects you. All we can do is offer help and advice to solve specific problems or issues as they arise.

[markiedee82 in reply to CMTUnitedKindom]

thanks yes i do have mobilty problem s its mostly my legs i have problems with walking , standing sitting for long periods and its starting to affect my hands and arms and im only 29 and i seem to be diteriating fast over last couple of yrs so im gettin a bit worried in wot else to expect

[CMTerSam Volunteer]

Yes, what Karen said...

[bev5985]

Yes CMT does affect everyone so differently mine affects my mobility quite severely and now have to walk with crutches and sometimes use a scotter to get around. My hands do tend to cramp up and ache and have spasms but my son is affecting more with his hands and his feet although he does walk with quite a gait and the way that he walks. He now uses a stick to help him maintain his balance. I find it very difficult to get decent shoes to fit comfortably

[Barry52]

I have started getting problems writing with my right hand tremors when writing very very annoying and frustrating I have bought that many pens I think I can keep the recession at bay

[CMTUnitedKindom Partner]

Shoes are always a perennial problem - I'm going to start a question to see if we can get some help and advice going on where to get the bloody things.....

[CMTerSam Volunteer]

Good idea Karen... shoes are a bloody nightmare!

It used to drive my Mum up the wall when we had to go for our annual shoe shop!!

Mum told me recently that the shoe shop ladies used to get irate with me. When they stuck my feet into that machine that measures your foot length and width, and they moved the length bit up to the end of my toes (which were only very slightly curled at this point) they would curl right up tight. hahaha!! (and it wasn't a voluntary reflex ... I don't think!!)

[curlyburli]

Day to day for me is wearing my AFO's so I can be mobile without tiring out and falling. using my mobility scooter to get to the shops then walking around a shop I needed and going to next shop with the aid of my scooter. Using adapted things to help my weakened hands, Like electric tin opener, thingy to help open bottles. Using coping strategies to lift heavy things (thanks to physio input). Using a bath cushion to get in and out of bath. Having a volunteer dog walker, thanks to the cinnamon trust.

[angelskylight]

HI

I have cmt type 1 a .i have foot drop on right had many ops on both feet i where afos on both feet an wear trainers i walk with a rollator to an occasionally a walking stick,.

I live in skirts an dresses .i never cover them up.i have very weak legs high arches curled toes an very weak arms an pain in both legs an both feet an both hands. they always aching. Hands feet get very sore my fingers are starting to bend an i am losing my grip an feeling.

find it difficult holding pens an writing even with pen grips have to use straws find full glasses etc heavy.

.i have a buton an zip tool.an graber reachers.i have every kitchen item going for bottles lids an tops can openers jar openers peelers etc an house hold tools an personal hair brushes etc.

i am unable to lift heavy items.my wrists are weak an drop.as like foot drop.i have wrist supports also.take gabapentin at mo want to ask neurologist for pregabalin for pain for a referral to the pain clinic.

.get referred to neurologist orthopeadic an pain clinic for more tests.have got really bad in last 2 yrs.

have mild arhritis an breathing probs.constant back ache burning feeling in parts arms etc.get sore hips thighs an knees sometimes grinding of bones.can't sit or stand for long .i keeping moving around cant stay still.

[spabbygirl]

I think a particular place for advice about shoes would be a great idea Karen. I've just written a long post about a place in totnes which makes shoes & they're fab, but a bit hippyish, which I really like. Is it possible to copy that to a general shoes information page?

I have type 1a too and my symptoms are very like angelskylight above.