Hi I am a 72 yr old diagnosed with charcott marie tooth disease probably type 2,I but not confirmed by nerve biopsy. I take 2 gabapentin 300ml.tablets per day. My problem is that I have completely lost my balance, I can walk o/k but if I meet someone in the street I have to find a lampost or a wall to hang onto to converse with them. Is this normal with CMT
many thanks.
It's very normal, I'm afraid. Would walking sticks help? What sort of shoes/boots do you wear? Perhaps something a bit meatier might help.
I'm afraid there hasn't been an awful lot of work done on balance to find out how to tackle balance problems - yet. A project is just beginning to begin to address what causes falls, trips and balance issues, and how to do something about it.
Kren
Hi Pikelet, I agree with Karen, I think balance problems are very common with CMT. If you are like me, you probably don't even need to lean on something so much as have a reference point, I only need to touch a fixed object with one finger to maintain my balance. The brain is not getting the neural feedback from the feet that it used to, so has to use other methods. We seem to adapt by using our eyes more to balance than non CMT people. Do you find your balance gets worse in poor lighting or if you look up into the sky? I carry a hiker's walking pole if I know I'm going to be standing still for any period of time, say in a queue or at an outdoor event. Like you I can walk reasonably OK, and young able-bodied people often use hiking poles, so I don't feel quite so decrepit as I would using a walking stick.
Malcolm
Same here, Pikelet. As a member of a choral society, I was becoming increasingly concerned about having to stand during concerts - and couldn't understand why. I kept feeling I was about to fall, which is a horrible sensation when you are trying to concentrate on the music in a concert in public.. In rehearsals I could surreptitiously keep my hand on the back of the seat in front, but in concerts we were on tiered staging.This was about the time I was being diagnosed, and I had just been referred to a physiotherapist. She seemed to think it entirely normal for CMT- types to have this problem, as explained by HorshamMalc. So for the next concert I requested a high stool. I felt conspicuous, but safe, and immensely relieved. I'd actually have had to duck out of the concert without it.
My balance has always been rather crummy (I remember in my teens having to carry a tray well away from my body so as always to be able to keep an eye on where my feet were - can't carry one safely at all now)
For many years now, I've been unable to cope with even a couple of steps that don't have railings, and this last year have succumbed to using a walking pole when out and about. It's less fogeyish than a walking stick (even as a bus pass user, I have my pride), and I think less of a strain on my wrist. To leave my hands free, I use a rucksack, and people sometimes say "been hiking then?" Ha Ha - I wish! They can't have seen my slow and erratic gait !
Standing, even with the pole, is a trial. Last year I requested "assisted travel" at Edinburgh Airport, but hadn't realised I'd have to stand for what seemed an age in a queue with impatient people fidgeting behind me, to check in before I got any help.
Using a camera in an open space has become scary and hazardous.
And take great care when turning ! Devices to counteract foot drop are little help here, and it is all too easy to get your feet tangled up with eachother, and you can suddenly find yourself in a crumpled heap on the floor.
Karen, - can people in the far Polar Regions of Scotland be included in the balance studies, or is it just for those in the SE of England ?
Hello to Pikelet ....
As you may know already that Cmt is described as a 'PROGRESSIVELY WORSENING NEUROLOGICAL DISEASE' : Your symptoms, like all sufferer's will only steadily get worse, and sadly to date there is no known cure ! The usual method of confirming a diagnosis is by a Neurologist taking blood, samples and sending them to a specialist University Lab, or by arranging Nerve Conduction Studies, to measure the much reduced velocity (speed) of the signals going to, and from your brain :
As you progress through your life, further SLOW deterioration will occur in 'STAGES' : You must learn to recognize that a gradual decline, as in quality, serviceability, or vigor, will be a feature of your disease: YOU ALONE, must then respond to the latest change to your circumstances, and therefore apply a 'POSITIVE MENTAL MANAGEMENT' attitude to respond/manage your latest decline :
I am now 69 years of age, Cmt was passed to me by my father, who had "club-feet" due to the total lack of medical information in the 30's / 50's : Both my high foot arches were reduced in the 60's, which gave me new stability, however nobody had the knowledge that my muscles would still continue to waste (atrophy) :
I now cannot sit down on the floor, and rise up without pulling myself up on the nearest furniture : Like yourself I need to find a point to cling to if standing still : Whilst I can walk ok, I cannot look up to the sky, my eyes are fixed downward to the ground to maintain my balance
In the last five years, the dreaded Cmt hands have now appeared with, clumsy / weak / clawing fingers / lack of 'fine-finger-dexterity' :
Regarding your prescribed medication, where you take 2 gabapentin 300 ml tablets per day, I wonder if you are aware of, and experiencing the well known side effects of this particular drug ?
Gabapentin is prescribed for, Neuropathic Pain caused by damaged peripheral (near to surface) nerves : The main side effects are, 'Drowsyness', and 'Swelling' of the tissues in your lower limbs :
I wish you well for the future !
DO NOT LET Cmt DEFEAT YOU ! "FIGHT IT" - TELL IT !
CMT GET LOST ! - AS YOU WON'T BEAT ME" ! ! !
John ..... (Glasgow)
Hi. I also take Gabapentin at 1800mg a day due to having Trigeminal Neuralgia as well as CMT and my ability to walk declined remarkably quickly. I was given on loan a 4 wheel rollator which although reluctant to use at first due to its image (im only 47) is the best piece of equipment I have ever used. It offers me the stability I need to walk independently. I agree with everything said above including needing just a finger on a solid surface to feel safe. I fall over if I look up to the sky and cannot go anywhere in the dark. Don't be afraid to use aids it will make your life so much easier, you will be less tired as you're not fighting against your condition.
I used to fall over a lot, but find that the only answer is to REALLY THINK all the time, even if you're just walking across your own kitchen, about what your feet are doing. Falls are often not because you're doing something dangerous, but because your attention's been distracted. Outdoors, I find a walking stick in my right hand and a walking pole in my left can be useful: two walking poles don't give enough stability, because your body twists between them. It's all just about management, really. I'm coming up to 71 now, having been diagnosed 20 years ago. Life gets gradually more difficult, but lots of other people have much worse conditions – you just have to keep cheerful and persevere. Good luck!
I am only 56 and I have balance problems, but physio gave me a crutch and it has really helped. I now feel secure when walking especially when wearing my 'foot up' too. I got rid of the bland NHS crutch and treated myself to an up market model from coolcrutches.com. Not cheap, but whilst I am still working I think of it as an essential accessory!
Hi Pikelet, I find the same too, I always need to hold onto something and now at 57 use a walking stick all the time. I don't mind it, I like an old fashioned wood one cos they're nice & natural and solid. I went to a physiotherapist a couple of years ago and she gave me some exercises which I do sometimes if I feel especially unsteady she also suggested I do riding at riding for the disabled because that allows you to exercise your middle part which helps your core stability and helps balance a bit. I found a nice group and it costs £5 a week.
All the little things help I think, but nothing is as good as proper working feet. I'm just glad I can walk at all.
Its a good idea to check about your medication with your doctor though, just in case its making things worse.
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