Are there any exercises that really help with balance?

[Amanita]

I'm hoping for something that can be done at home with no fancy equipment, if possible.

My physiotherapist has recommended standing unsupported (but between two strategically-placed chair backs to grab when necessary) with one foot directly in front of the other for as long as possible, and then swopping the front foot to the back and trying again. How long is "possible" varies from day to day, and according to which foot is in front, from no seconds to about 20 But in spite of doing this most days my general balance is getting worse.

In the (council run) gym where I have now been sent, they once tried me out on a wobbly semi-inflated rubber cushion, but I could never get both feet, or any of my weight, on to it. My hands soon became tired from desperately gripping the window sill, so we gave up that exercise.

[Shazza65]

The key to improving your balance is to keep your core muscles (those around your stomach and pelvis) strong. You need to have a good posture and try to keep your knees flexed and your bottom tucked in. I'm surprised that your Physio hasn't been more supportive, ask your GP or at your hospital if they have physios that specialise in neurological illnesses. In Derby they have a separate team specifically working in this area. Once you can get the exercises they are all really easy to do at home with no special equipment.

[Amanita]

Thankyou, Shazza,

The problem is that my physiotherapist IS the one who specialises in neuro-probs in our hospital! She has about 3 CMT patients. Perhaps this is a peculiarly Scottish situation, with our relatively small, scattered population (I am well north of Edinburgh and Glasgow). She has done her best, and set me loads of exercises to do at home - mostly to stretch Achilles tendons and try to maintain some strength in my ankles and legs. She has referred me to the gym, with a request to give me core muscle exercises (in addition to the exercise bike) : these are done lying on a mat. (lying on my back with feet on mat and knees raised, and leaning knees over from side to side, then lifting feet and raising knees towards chin). Following the failure of the wobbly-cushion balancing, I seem unable to get any help with the balance. And my orthoses certainly don't help with balance (being primarily for foot drop), which is very disappointing.

Apart from "good posture", which I do try to practise, are any of your balance exercises describable?

[John1945]

Hello to Amanita.....

I have been there, seen it and done it ! 'many-many' times:

The "wobble-ball" device suggested by your physiotherapist, will simply just not work for any Cmt sufferer's:

To me this once again, displays the total lack of understanding from your health professional's understanding, of a Cmt sufferers particlar problems, and their own personal needs !

Your existing long 'Peripheral-Nerves' system, i.e. >(positioned just below your skin's surface), are damaged due to an iherited gene mutation:

These nerves which are covered, in "wax-like" substance called, 'Myelin-Sheath-Insulation', are damaged, and the electrical wave signals "to & from" your brain "leaks", therefore, the balance signal(s) speeds >(velocity) going "to and from" your brain, via your "SENSORY" (touch/feelings/sensations) nerves, are very much reduced, therefore, no amount of physical exercise can cure, or improve your inherited Cmt symtoms:

Your electrical "MOTOR" or, (commands, brain to your muscles) signals, which "Tone" your lower limbs muscles by electrical waves/pulses/stimulation, and once again, go "to and from' from your brain, to connect your receiving muscle group, are also greatly reduced in velocity >(speed), therefore over along period of time, the receiving muscle group will continue to a condition called atrophy >('waste-away'):

Likewise your "SENSORY" nerves (touch/feelings/sensations), these nerves are as equally damaged, and send/convey/touch/feelings/sensations/information, are also very weak, and carry a very slow, and much reduced response electrical information signals, back to your brain !

Remember, that Cmt is described as a Neurological Disease that will get progressively worsening, and at this present time, has "NO-CURE" :

Yes ! Whilst general lightweight exercise is good for Cmt, however if you decide to target, and attempt to "bulk-up" any particular group of muscles, it will simply be a waste of time ?

Cmt is definately a "catch 22" disease, if don't exercise your muscles will get "floppy" ! If you over exercise, then your body will suffer from fatigue !

Best of health to you.....

John (Glasgow).....

[Amanita]

Thank you, John,

To be fair, it was the exercise lady at the council-run gym who tried me out on the wobbly cushion, (not my physiotherapist at the hospital - who gave me a "prescription" for gym sessions), so it is hardly surprising she didn't know anything about CMT.

I shall soon be discharged by the physiotherapist. This seems a pretty unsatisfactory system for a progressive disease where ones problems are neither sorted nor static. A 6-monthly or annual review would be very helpful and reassuring, but presumably the old NHS just can't afford to have people cluttering up physiotherapists' lists indefinitely -so when the next problem crops up it'll be back to the 3 month (or more) wait.