How to Manage (deal with) CMT

[Guest guest]

Tracey,

Welcome to the group. I've lived with CMT since diagnosis 48 years ago. If you

think no one knOW anything about how to deal with CMT now, even less was then.

However, after I had a soft tissue foot surgery and physical therapy, my

orthopedist said to swim as much as possible and to walk in the sand (We lived

in an area close to the beach) Since I loved both, it was the perfect exercise.

Then I started horsebackriding, another perfect exercise for me. (loved this

too) and I was on my bike to school, to friends, to shop before I could drive.

Throughout college and grad school I biked, I swam, I rode.

Later I did Yoga for awhile, took Aerobics, still rode the bike, powerwalked and

other. After a spine fusion unrelated to CMT, physical therapy was in the pool

and I followed that up with a pool exercise class (no swimming, but gym type

exercises which I refer to an aquatic exercise. Wall slides, steps, biking,

kicking, push ups, situps, eye tracking (for balance) rowing, and more.

I got so hooked on being back in the pool and still go 3-4 times a week. The

best part is the pool is about 98 degrees, so it's a double 'feel good' year

'round too.

My point is exercise - first 'perscribed' by an orthopedist paid off in

dividends. Approaching my 58th birthday this summer, I'm in good shape. Strong

upper body and inner core. Still have leg strength. Very low Body Mass Index,

weight is 116 (bottom range for someone 5'5 " )

Not only that, I eat fresh fruit and vegetables, brown rice (a must!) range free

chicken, and buy organic. I also grow what I eat. (Fruit and Vegetables and

herbs) My doctor is baffled cholesterol tests are normal and other stuff - I am

perfectly healthy.

OK so I have hammertoes. I check my feet daily, they are washed, treated with a

softening scrub, moisturized and massaged. I do have inshoe orthotic inserts so

I can easily walk on all surfaces, gravel, grass, mud. My shoes give me a

stable heel counter so I can walk heel/toe. And so I can continue to be active

and my feet can absorb the shock of hard pavement.

I went to a neurologist in my teens who had me on potassium supplementation, for

some reason my electrolytes were running low. Yes, I also drank like a fish,

which I thought I needed for sleep. By then the only symptom I had was tremors

which were irritating, so that same neuro gave me valium.

After conquering addiction to both, I started paying more attention to my body,

respecting it, and finding doctors I could work with. I have educated many about

CMT with brochures, newsletters, medication alert lists, etc.

One internist recommended I add Vitamin E to my daily life. So for 15 years I've

been taking 1000 IU of it each morning. I also discovered Fijiwater, which has

silica, magnesium and calcium in it and drink about a liter of it per day.

I guess what I'm trying to say, unless you see a doctor at one of the 6 CMT

Centers of Excellence, you will need to educate your own doctor in CMT. So

reading posts here you will find how each one of us 'manages' (not 'deals with')

CMT. You will need to find what works for you - managing CMT is like facing each

day as a " new fronteir " . And we're all different.

CMT is not as common as ALS or MS, but gradually, nationwide awareness is

building and more of that will come.

Again, welcome to . Post anytime and someone will be able to help with

their experience that you may find useful in your own life. Lots of info in our

Files, Links and Archived posts too.

Gretchen