Exercise and vitamins... delayed response..

[Guest guest]

Greetings:

I've been out of the loop for the past several days due to Hurricane

Isabel (I live in Southeast Virginia). I was able to get back on this morning.

I can ONLY speak for myself, but for me, I can still exercise and have

found exercise VERY beneficial in the past year. I must say that I am

comparatively mildly affected (hammer toes, very high arch, some muscle loss in

calves, some weakening in hands), and that thankfully, my upper limbs are still

very strong. I HAVE LOST ABOUT TEN POUNDS IN THE PAST YEAR THROUGH EXERCISE

and DIET CHANGE. The first six months, I did not lose ANY weight but I did feel

better and I lost an inch off of my thighs. The weight has just started to

finally come off the past several months - without any other change in routine.

This effort took a lot of patience because the payoff was not immediate -

although I did sleep and feel better somewhat quickly.

For exercise I use an ELIPTICAL/PRECOR trainer - this is like a machine

that you run/walk on but there is ALWAYS A PEDAL UNDER YOUR FEET SO FOOT DROP IS

NOT POSSIBLE - for those of us that have that as a problem (I get it if I walk

too far/long). Two doctors have both told me that they think it's a great

exercise because there is little/no impact on joints but it burns calories. I

also occasionally bicycle and use a tread mill. I have also done a few

yoga/pilates/tai chi combination classes - these are great except for the part

where you have to stand on one foot for a few minutes - I can't do that. FOR

ME, my balance is noticeably better in the 24 hours after I exercise.

Anyway, in addition to losing the weight, my standing balance is much

better - I think in large part due to the weight. I am also able to walk much

faster than before and can walk further before my feet drop.

For ME, I am doing whatever I can to keep the unaffected muscles strong

to help carry the burden of the CMT affected ones.

I also take Coenzyme Q10, Vitamin E, Vitamin B12 and

Glucosamine/Chondroiton (helps build cartilage and support muscles), on a

regular basis. I drink green tea when I can too.

These changes have really made a noticeable difference for me. I do

notice though, that my hand seems to still be weakening a lot and the exercise

has not really helped that.

At this point, I am doing anything and everything I can think of to be

as healthy as possible for as long as possible. The more I think about my CMT

and it's uncertain prognosis, the more I notice it getting worse - this was

happening before I began these other changes. I am trying to do what I can not

to think about it too much, but that can be hard.

I DEFINITELY understand if folks with further progressed CMT can not

exercise or with a lot of extra weight and CMT, find exercise EXTREMELY

difficult.

Just my experiences...

Peace, Marti