questions and lots of them :)

[Guest guest]

Hi I'm Elaine in Florida, never been diagnosed with CMT 1 but my

youngest daughter was when she was 16, (she is now 25). I know I

have it, I certainly have all the syptoms and we get it from our

Mother who is now 87. One of my sister's has just been diagnosed

with it too.

I have a very unusual walking gait with my left foot being the drop

foot, unable to walk heel toe like other people. I have to lift my

leg up to walk and not trip. My left hand actually my thumb is

getting very weak and unable to grab thick things to pick up.

I walk in the evenings at least three to five times a week for

30minutes and I also like to follow Sansone's excersising

DVDs.

My husband is a very understanding, kind man who knows I have this

and it is in the family. I can't climb stairs very well, not enough

strength in my legs and feet. Sometimes I want to tell him more

about my symptoms but do not want to sound like a cronic

complainer. I know I can't do what I used to as far as physically

keeping up with other people. When the girls I work with go out for

their walk they always ask me to go, but they do not know what I

have and there is no way I can keep up with their fast walking.

It's hard to try to decribe to my sweetheart about my loss of

balance. As in standing and talking to someone it is so much easier

if I have something to kind of hang onto. Please everyone tell me

you know and feel things physically like I do. Loss of balance, odd

walking gait, everyone loves to watch the way I walk... thanks for

this group, it is wonderful having a group to talk to about this. I

can't believe none of us in my family were ever diagnosed at an

early age. It took my then 16 year old daughter to be diagnosed.

That was due to the fact her patella in her left knee would not stay

in place and she has pes cavus feet. NO ONE ever saw that or

diagnosed us.. whewwwwwwwwwwwwwwww.. Thanks again for reading and

responding... Elaine