CMT seems to be getting worse

[Coffeeman]

I am 56 years old and was diagnosed with CMT when I was 10. I always have had some limitations like climbing stairs and frequent falls. But it has gotten worse over the years. Now if I fall I can't get myself up. I have trouble getting out of bed in the morning. After I get out of bed I'm in pain. I can't even tie my shoes my wife has to do that for me. For my work I try to avoid social events like going out for lunch or dinner. I know I'll have to confront many physical obstacles if I go to social events like walking on uneven sidewalks, stepping up curbs, or climbing stairs. It can even be nearly impossible for me to get up from a seated position in a resturaunt. This all leads to embarrassing situations. Any sort of public travel is out for me. All of this is becoming very scary. I love my work but fear that my lack of mobility may continue to get worse. I don't know what to do. I could use some advice.

[bansaleb]

Stretching key affected muscles will help mobility and functionality of your legs/forearms. It is not a remedy by any means but it does help progression and improves balance.

As aCMT patient myself, I find that focusing on my calves is quite beneficial and feels good. Ive noticed improvements in my balance, leg strength, and stamina which is a win in my book.

Key muscle groups are calves/hamstrings and flutes (protagonsit/antagonist muscle groups). If it affects your forearms, stretch out the wrist and finger tendons.

Stretching will not help with the pain itself. Sorry my friend. There is always orthotics to help abnormal gait but they can be costly. I have a pair of shoe inserts orthotics which helped my gait until I wore the orthotic out.

That's all I have. Goodluck my friend.

[Coffeeman in reply to bansaleb]

Thanks for the reply. I've tried orthodics but I already have difficulty getting out of a chair or my car. I've found orthodics make this task impossible. Your suggestion about stretching may be a good idea.

[Amanita]

I have been thinking about your post for a bit.

I do appreciate your problems and awkwardness about them.

Unfortunately it is the nature of CMT to creep up on you , at a slow steady pace according to neurologists - but perceived by us as a series of steps. I suppose every time something becomes impossible instead of a challenge, you feel it has happened suddenly when probably in fact another borderline has been crossed, maybe slowly and steadily but irrevocably.

So, how do we cope with it ?

First some questions - are you seeing a neurologist regularly ? They can't reverse the process but they may be able to direct you to e.g. a specialist physiotherapist or an orthotist who can respectively help you to retain what strength/balance you have, hoping to slow down the loss - or help you prevent falls with appropriate footwear, bracing etc.

Does your wife know about your diagnosis ? She obviously knows about the symptoms as she helps you with your laces, and must know what happens when you fall. Is she sympathetic and supportive ? has she any advice for you about facing your worries? Would your workplace be understanding if you told them about your CMT ?

I think the really huge problem is admitting, firstly to yourself, and then more publicly - that you have a disability.

We all cope in different ways.

I spent my childhood dreading physical education lessons, and wondered why on earth I was so much worse at sport than even the second-worst in my class - when there was nothing wrong with me. I managed to live many years without realising I was anything more than clumsy, as I worked from home. But it got harder and harder to run for a bus, and I fell even more frequently. Then I gave up riding my bicycle , as I simply didn't feel safe. It became increasingly hard just to stand (if anyone thought I was drunk nobody said anything). Nobody including my husband ever suggested they thought I could have a physical problem, and it wasn't until I was his full-time carer, and realised I simply couldn't do the things that were demanded of me - that I decided to Do Something About It. I had had an unofficial CMT diagnosis when I was 40, but due to the particular circumstances, buried it all under my psychological carpet - but at least I had a name to baffle my GP with some 25 years later when I asked to be referred to a neurologist. Things (referrals to physio, O.T. and orthotist) followed quickly after that.

At first I started using a walking pole, but when this was soon inadequate, I made what felt like the enormous step of using an elbow crutch - and being seen in public with it. Now I can only go out with two, and have got used to it. I have graduated from flexible ankle supports to AFOs (braces) and from commercially available extra-wide shoes to clunky-looking NHS boots (with velcro fastenings) My walking is extremely slow and exhausting, so I either drive 200 yards to post a letter, crawl round a supermarket using the trolley as walker - or simply don't do stuff. I would really love to be able to go and visit friends in different parts of the country, but even if i got there, I worry that I'd be defeated by steps, unfriendly bathrooms....At least some friends come and stay with me.

I now have an NHS wheelchair, but with my CMT hands and wrists can't self propel, so cannot use it. My current project is to find a power chair (not difficult) and a way of getting it into a vehicle entirely on my own (extremely difficult) - and then I will have to deal with people seeing me looking "really disabled". But I look forward enormously to being able to go round gardens and museums for the first time in many years.

A mixture of being pragmatic, and trying to think positively, I suppose.

I hope this has helped a little, and wish you good luck.

[Coffeeman in reply to Amanita]

Hi Amanita,

Thanks for your reply. My wife is very supportive of my condition. She knows about my diagnosis and was a Physical Therepy Tech so she helps me with stretching exercises. I don't see a neurologist. I've done that in the past but never found any benefit and it's quite expensive. I used to use orthodontics but they make it impossible to get up from a chair. I guess what I'm asking for is a way to cope. I'm so afraid that one day I'll lose the ability to work. I know CMT has affected my feet. I have a constant throbbing pain on the right side of my right foot. I went to an MDA clinic for it but they didn't help. My whole body is also stiff. And now that I struggle to get out of a chair, it's starting to effect my back.

At home I sit in pub chairs. That helps but I'm wondering what I can do to keep CMT at bay. I'm afraid that if I don't do something I will lose my mobility.

[Morllyn in reply to Coffeeman]

My husband has had CMT since he was a very young boy and is now fixing to be 72. He too has begun to have problems getting up out of chairs. At home I put a hard pillow under the cushion of his favorite chair to elevate it. That has helped. I am not sure what we and you can do about when you go out except to let your wife help pull you up.

The doctors told my husband, years ago, that if you stop using those muscles you will loose the use of them, so do everything that you can to try and keep yourself moving.

My husband fell so many times (and he could not get up without help) when he didn't wear the AFO's, so I told him that if he fell and broke his hip he would have to go to a rehabilitation facility until he could walk without help. I was not trying to be mean, I love him very much, I just wanted him to realize that I would not be able to lift him or turn him over if he could not do it himself, because I have Multiple Sclerosis and a bad back. He got some new AFO's and wears them every day now.

Do not ever be embarrassed about a disability, do what ever you need to keep yourself mobile, use whatever aid you can find (crutches, braces, electric carts, wheelchairs) just don't give up.

Have you looked into the lift chairs that electrically lift you up to a standing position? Just a thought.

[Coffeeman in reply to Morllyn]

Hi Morllyn,

Thanks so much for the good advice. I think that I'm going to pursue getting some physical therapy to help battle the muscle loss.

[bev5985]

i too found my CMT got worse the older i got and now have to use crutches to help me walk and get up from a sitting position but it does help. I would try this if I were you. Unfortunately I had to give up work 3 years ago due to my deteriorating condition and the fact that I contracted MRSA following knee replacement surgery

[Coffeeman in reply to bev5985]

Hi Bev5985,

I'm sorry to hear that you're on crutches. I'm not there yet but if I don't find a way to slow down the progression I'll be there. I can't get up with a cane. If crutches would help, I would use them but I'm not sure they would.

[LoolooLacey2 in reply to Coffeeman]

As I was diagnosed firstly with a myopathy, which is now being debated by my Consultant (she thinks I definitely have a myopathy of a kind, but not the one I was told back in 2000) and now have all the classic symptoms of CMT, I got myself an electric recliner a good few years ago and that obviously makes a huge difference in getting in and out of a chair. I can also relax with my feet up and it also helps support my back. I have definitely deteriorated this year and it was only this year that I put all the symptoms together. I await a Neurologist appointment. If you need a powered wheelchair then use one as it will help you to get out and socialise, do not give up and try to keep as active as possible. In my case I had to give up work back in 2006, but was given a lot of help with benefits then, but now having to fight for them this year. Keep fighting and most of all enjoy what you have.

[bev5985]

A waling cane never helped me either i found them too unstable whereas elbow crutches really help with your balance and the uneven footpaths out there. However, I do use my electric wheelchair when i am having a really bad day

[Jealousone]

Diagnosed with CMT unofficially last year when my son was hospitalized with another unrelated illness. He was under the care of a neurologist who said he had CMT and he got it from me. He had the physical exam and the nerve studies and I had the physical exam. He was diagnosed with CMT 2. I didn't take it too well and brushed it aside so I could deal with his health issues. Later I got symptoms - burning feet - and went to the GP - got medicine and a referral to a Neurologist. Saw the same one as before. Diagnosed with CMT 2 - axonal type. I have been lead to believe by other research into CMT that its not as severe as the CMT 1 which involves the myelin sheath. Does anyone out there have CMT 2 and knows how severe it will get - trying to be positive!!!! very hard at times

[diagnosedcmt]

will i be able to run in the future and y cant they find a cure like usin differeinciated stem cells i wish there was a cure because when i sit on the floor its very hard to get back up and climbing stairs lets not go there i honestly feel like whats the point coz it ganna get more progressive i need some advice

[beachwine]

At doctors offices & restaurants I always look for a chair with arms so I can push myself up from a seated position. But here's a real problem....toilets. No arms there to push yourself up. Even in the handicap stall there is only the one bar on one side to try pull myself up. My hands and arms are starting to be effected by the CMT. I fear one day I won't be able to get up by myself. That puts major fear in my soul. Scary thought.

[Alan66 in reply to beachwine]

Hello, I am 51 and had 1a since birth. I always need a chair with arms. I use a pint mug and not a straight glass in case I drop it.

I too avoid many social situations as I stress internally about having to stand for too long, worry about stairs, steps, queuing for buffets etc.

Colleagues may assume I am anti social.

Always a laugh when you're the only one waiting for a lift!

However, Pilates and swimming do me the world of good as does the frequent walking of my dogs. Adopted a walking pole. Helps me get back to my feet.

Couldn't cope without my light weight walking boots, Scarpa Terra gtx and of course my understanding wife!

Do people still go to concerts and festivals because like many things, it's too much hassle.

How much does CMT shape our minds? Too much probably.

Despite sometimes being thwarted, I thrive on the variety of life so keep looking for things you can do.