Re: educating the unknowing

[Guest guest]

Gretchen, and all!

I have spent most of my time in these last few weeks

explaining to my friends, co-workers and employers

about CMT. I have told them that I do have it and

that it is not depeliatating yet. There first remarks

are of sorrow, then say they have never heard of it.

I most likely will get a DNA testing this spring to

figure out just which " brand " of CMT I do have. My

son is one his way to a wheelchair I think, but I am

not. It is my hands that are affected the most.

Any way back to the subject of educating others. I am

trying to educate myself first, even if it has been in

my family for generations, I know little about CMT. I

tell them what I have found and where I find it. I see

that the most caring of them really do go to the

computer, text-books, medical journals, etc and look

it up. In a way this shows me who really cares and are

going to be supporting friends in my future. Like my

unusual last name, Lemin, friends will learn how to

pronounce it. It is a Cornish name that migrated from

Brittany about 600 years ago. In the States it is

pronounce La'men, in the UK it is pronounced Lee Men,

it and we are not LEMONs LOL. Thus CMT and peripheral

neuropathic diseases all have different branches that

affect people differently.

Children can be either the cruelest or the most

understanding of all the human race, I have found this

out through my health care profession, church and

general public. If children don't like you, you know

it right away. If they do like you, you have a friend

for life in some degree.

I will send an answer to the post about " self esteem "

that is really a true story about my mother that I

wished I had learned earlier in my life.

Susie

--- Gretchen Glick <liliwigg@...> wrote:

> I feel we need to try to 'educate' people in regards

> to disabilities, my

> own brand of CMT is hardly noticeable, until I have

> walked quite far and

> my limp shows up. The questions come up 'did you

> hurt your foot' or

> 'what's wrong'? I try to give a very simple

> education and crash course

> in CMT. People seem to like the fact I will explain

> this to them. Just

> my small part of education in that those of us with

> 'hidden CMT' have it

> tough too. ~ G

>

> LldyBg013@... wrote:

> > more under standing people

>

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[Guest guest]

Gretchen,

Just thtought I would pass this on re: publicity for CMT, crash courses, etc.

Last fall, I called our local newspaper and asked if they would consider

doing an article on CMT for their Health page which appears weekly. I

mentioned that they had been running our notice of support group meetings

regularly for us for a couple of years.

They agreed, and sent a reporter out to interview me personally. Then, the

reporter and a photographer came to our support group meeting. During the

two hours they were there, they interviewed, or spoke with, all of those

attending that meeting. THe article was great!

I had a number of cards for me, calls from people interested, etc. We have

only had one subsequent meeting (we meet quarterly), so time will tell if it

truly brings in new members. However, I do have many more people asking me

about the problem.

My CMT is relatively mild, to many people's eyes; they notice my odd way of

walking, SAS shoes, lack of hand muscle, etc. So, it may help a bit to get

the word out about our frustrating situation.

Hope this works for you. Keep up the good work; I have learned much from

this site.

P.

[Guest guest]

Yeah for !!!!!!!!!!!!!!!!!!!!

--- amtcp36@... wrote:

> Gretchen,

>

> Just thtought I would pass this on re: publicity for

> CMT, crash courses, etc.

> Last fall, I called our local newspaper and asked

> if they would consider

> doing an article on CMT for their Health page which

> appears weekly. I

> mentioned that they had been running our notice of

> support group meetings

> regularly for us for a couple of years.

> They agreed, and sent a reporter out to interview me

> personally. Then, the

> reporter and a photographer came to our support

> group meeting. During the

> two hours they were there, they interviewed, or

> spoke with, all of those

> attending that meeting. THe article was great!

>

> I had a number of cards for me, calls from people

> interested, etc. We have

> only had one subsequent meeting (we meet quarterly),

> so time will tell if it

> truly brings in new members. However, I do have

> many more people asking me

> about the problem.

>

> My CMT is relatively mild, to many people's eyes;

> they notice my odd way of

> walking, SAS shoes, lack of hand muscle, etc. So,

> it may help a bit to get

> the word out about our frustrating situation.

>

> Hope this works for you. Keep up the good work; I

> have learned much from

> this site.

>

> P.

>

>

> [Non-text portions of this message have been

> removed]

>

>

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