welcome Suzanne/Cramping, Exercise, Physio

[Guest guest]

Hi Suzanne,

Welcome to the group. I was diagnosed with CMT1A (no DMA test though) in about

April I think of this year, although have suspected it for some time. My mother

was told she had CMT, and I have a lot of the characteristics she had, like high

arched feet, and a slower pace of walking. But the CMT has never stopped me -

my doctors say although I have some symptoms, like minor atrophy, and minor foot

drop on the treadmill tests, that otherwise I am not really pronounced.

However, I have always believed in taking a very proactive approach to

managing this, and that means total body for me.

I need to get the booklet Gretchen mentioned. But I can say the following

exercises, although not always easy (knowing your limits and not getting

frustrated by them is vital - I have to laugh at myself a lot, but I have made a

lot of progress too with things) - these have clearly helped me:

1. Yoga

2. Physio strength training on my quadriceps in particular as I have

atrophy there due to the walk I have developed which uses my hamstrings more -

this is important, and common (not just CMT) due to injury people get this - and

it leads to insertion tendonitis for the tendons leading to the kneecap, which I

have and which flares up now and then (known also as jumpers knee, which I

aggravate always after I go out dancing!)

3. Exercise and strength training (physio) on my hip flexors. Again, I don't

know why and neither does my physio, but it would seem that I have weak interior

hip muscles. I walk long distances about once a year for charity, so without

this physio I develop an odd twinge inside my hip. I can always tell when it is

time to go back to the gym again to work on this too.

4. Aqua aerobics - I love this! And it is great for internal core

strengthening, and keeping the arms toned too! Sadly my gyms are now only doing

this at odd times of the day to cater for the retired set, as in at 10 am,

whereas they used to do classes at 6 and at noon, to make sure the working crowd

could attend.

As for a total body approach, I have gone to a nutritionist. My advice included

a big reading list, which I have not done yet (I am bad - and busy) including a

book on good fat vs bad fat. My nutritionist advised me to cut out meats just

sticking with things that are of avian or undersea nature (seafood and bird incl

game birds all fine). However, I just love steak (a good tasty cut) so this has

been hard, as well it is hard because I travel a

lot for my job and it is rude to not eat when you are being treated to lunch in

some cultures. I feel better (lighter) when I follow the rules. I am also

supposed to cut out dairy (cow) products - this is easier, but I did tell my

nutritionist that butter was in my diet to stay, as I cook a lot and bake all my

own goods (when I want a dessert I make it).

And I take supplements to make sure I am ok - I (should) take Udo's Choice Omega

3, 6, 9 capsules - apparently although 3 is good, the combo of 3, 6, and 9 is

event better for joints! I also take a product that counter acts phyto (plant

induced) oestrogen production - I eat a lot of soya products, and have a history

of breast cancer in my family, so my nutritionist has shown me studies on

oestrogen enhancing breast cancer (and thus the absence of cow

dairy from my diet too) and soya induces oestrogen. Basically the counter

balance to this is a substance extracted from brussel sprouts. I take normal

vitamins (centrums). I also take, when I have eaten too much meat, an enzyme

that assists with food break down, as my nutritionist says that most stomach are

lazy these days, so when you eat poorly your body forgets how to break down food

to extract the nutrition. I find when I do take these pills I never feel too

full after a big meal, which is another benefit

- full but not sick and liverish, I should say.

Finally, I need to add in and be vigilant about vitamin C - I am still

looking for time released capsules.

As for cramping, my dad (non CMT) has had this his whole life. He believes in

tonic water and grapefruit juice as means of reducing his cramps. I get cramps

too, but only after I have had alcohol or worked out too much. So for me that

is down to exertion or chemicals causing imbalances. Again, I think the vitamin

C and potassium regimes will help me, but so too has cutting down on excessive

drink, and drinking at night (never more than two glasses of wine now with

dinner only). Besides, alcohol is really not good with CMT.

Again, with CMT, see a neurologist that you like that has experience with CMT,

see an orthopaedic if you have any joint or bone problems (e.g. feet or knees),

see a nutritionist for another way to manage, see a physio to start a good

routing BEFORE you have any problems, make sure you have good teachers at the

gym classes that know and are interested in your body and limits (my yoga

teacher is fab!).

That's all - let me know if you have any other questions which I can share with

you my approach and experiences. This list is great as we all have differences

and it is great to hear how lots of people handle each situation they are in -

it inspires hope and helps me out hugely!

- Donna