accepting one's CMT

[Guest guest]

Hi Louisa,

I have 5 children - 17, 13, 10, 2 and 8 months. I did not know I had CMT with my

first three children. With my oldest I had a hard time accepting that he had

CMT, with my 2nd I was really in distress. However, it has been about 8 years

now and we know that the most important part is---who they are inside as

individuals. We homeschool our children and they are very well rounded children

and enjoy karate, and various field trips and gathering with other children. It

is hard to accept at first, however no matter what I love my children and

CMT is only a small part of who they are. I know the bigger picture of who they

are and each one of them are individuals with gifts!

Heidi, Type CMT 1A and mother of 5

[Guest guest]

Hi Louisa and all,

Accepting my CMT took me about 17 years from diagnosis to the time I

entered a 12 step program and learned from them what ACCEPTANCE is

all about. That 17 year period is way to long to go through without

acceptance of CMT, but that's just the way my CMT played out -

together with some denial, a strong will, guilt and alot of alcohol. There is no

CMT in my family either.

Louisa, I am not clear if your son was diagnosed with CMT by the

podiatrist or a neurologist. If it was the podiatrist, then I'd

suggest your next step would be to see a neurologist and/or maybe

orthopedist. Depending on what your son's needs might be, foot

orthotics, AFOs, vitamins, gait rehabilitation/physical therapy, they

will be better qualified to direct you.

To find neurologists/or orthopedists who know CMT first try your

local MDA clinic. CMT is not a dystrophy, but MDA clinics do help

people with CMT go to this site, and put your zip code in the search

box to find your local clinic http://www.mdausa.org

Help is available! We are all so different in our needs, so a

good " team " of professionals works well - for me anyway.

~ Gretchen

[Guest guest]

In a message dated 9/13/2005 10:19:25 A.M. Pacific Daylight Time,

lfusski@... writes:

Where do we go from here? PA area

Thank you for sharing

Louisa

Hi Louisa, It does get easier. It takes time. When my 2 boys were dxed I

felt like a death had occurred. The future I had imagined for them was gone.

It is normal to grieve. I try to take each day at a time and I read all of

the research that Gretchen the moderator finds for us. Please read about the

vitamin C research in our files.

[Guest guest]

In a message dated 9/13/2005 10:49:21 A.M. Pacific Daylight Time,

GfijiG6@... writes:

Accepting my CMT took me about 17 years

I think accepting my CMT took me 30 years.

[Guest guest]

Hello everyone,

It took me about 8 years to accept mine. Now I just am who I am. Yes CMT

is a part of who I am, yet the other parts outweigh the CMT, the poet, the

outgoing personality, the friendly person, etc.

Heidi mother of 5

[Guest guest]

Funny, I just had this conversation with a friend and realize it took me 20

years to accept and this acceptance is largely due to this group. I always

thought that I had accepted it, but I believe it was more ignoring than

acceptance.

Thank you all for your posts and words and thank you Gretchen for putting

together something that every disease or disability should have!

Jackie

[Guest guest]

In a message dated 9/20/2005 8:41:08 A.M. Pacific Daylight Time,

jeanet@... writes:

Funny, I just had this conversation with a friend and realize it took me 20

years to accept and this acceptance is largely due to this group.

This is also true for me.