Re: Educating others about CMT - no lies

[Guest guest]

Geri are you CMT type 2?

In a message dated 1/18/2010 4:29:22 P.M. Pacific Standard Time,

hotwheels@... writes:

Those that don't want to explain CMT should not take advantage any funding.

Leave it to those that are willing to educate others so that there is an

understanding of CMT, maybe even a cure! Hiding is not going to make it go

away or help us that have it.

I feel if people ask me it doesn't mean they are being nosey....I will

give them a benefit of a doubt!

Someone on this group said that people can look it up......how can one

look it up if you don't tell them what you have? Dosen't make sense to me! Yet

most of the group says they want people to be aware!! If

not.........Someone on this group said that people can

Geri

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Maybe you should go to another church,

How did the conversion start that he wanted to see your legs?

Amway time to get on with your life, your experience is not devastating!

Maybe he was a doctor!

Is this another want a peek-a-boo or the same old thread?

Do you have another problem we can hash over for days...get over this one.

Who is he...I'll show him my legs.....lol

I have had men try do worse things then that.!!!.

Geri

I met a shit in the church group.

The shit, a disgusting man, requested to see my legs.

I don't show anyone anything, unless I feel happy to do so.

>

[Guest guest]

My badge will be ------ I don't owe you an explanation.

On Tue, Jan 19, 2010 at 5:38 PM, Beata Boo <beataboo@...> wrote:

>

>

> I just remembered that in the reastuarant at my work place, there is a deaf

> guy. He wears a sign: " I am deaf, but I can read your lips " . He never misses

> an order, so he is a great lip reader, that's for sure. I think he got tired

> of explaining to every customer that he is deaf, because people are

> impatient, they mumble or look the other way when they speak. So the sign

> made it easier for him to do his work more efficiently. But the sign also

> says: I am deaf and proud of it! (Indirectly.) So maybe we should wear

> badges with: CMT - a nerve disease that affects my gait, but not my brain!

> (Other suggestions for a cool CMT badge?)

>

> My friend wears a badge: " Swine flue survivor " . For her, it has been a lot

> of attention, because a lot of people ask " What was it like? " So badges can

> acctually mean you have to explain more! Maybe the perfect badge is: " I am

> deaf, dont ask me about my gait! " ;o)

>

> Beata

>

>

>

[Guest guest]

I really think the ability to open up to strangers about CMT depends on the age

we were diagnosed. As adults we are not tormented like the younger type CMT 1A

group. Of course not always but physiology were effected differently.

[Guest guest]

I, too, am curious about the circumstances that surrounded this request to see

her legs.

One of the things I learned in a peer counseling group for PWDs is to never tell

somebody to " get over it " or to tell them how they should feel/react/respond.

That's almost never helpful. It just causes people to stuff their emotions out

of shame. It's ok to feel what we feel.

Lynna

From: hotwheels@...

Date: Tue, 19 Jan 2010 14:40:55 -0600

Subject: Re: Educating others about CMT - no lies

Maybe you should go to another church,

How did the conversion start that he wanted to see your legs?

Amway time to get on with your life, your experience is not devastating!

Maybe he was a doctor!

Is this another want a peek-a-boo or the same old thread?

Do you have another problem we can hash over for days...get over this one.

Who is he...I'll show him my legs.....lol

I have had men try do worse things then that.!!!.

Geri

I met a shit in the church group.

The shit, a disgusting man, requested to see my legs.

I don't show anyone anything, unless I feel happy to do so.

>

[Guest guest]

Wow. That is a very good point.

>

> I really think the ability to open up to strangers about CMT depends on the

age we were diagnosed. As adults we are not tormented like the younger type CMT

1A group. Of course not always but physiology were effected differently.

>

>

>

>

>

>

[Guest guest]

Thanks Lynna

I chose to post this experience here because I would like to know how CMT

friends might feel if they encountered the same experience or whether this

kind of things have ever happened in their lives.

I also asked my other female friends who have no CMT how would they feel if

being asked to see their legs. All of them feel being insulted if asked by a

man who they don't know at all to see their legs.

I look forward to hearing authentical sharing of opinions and feelings from

your own part.

Being a researcher in psychology, I do not need people to tell me how to

feel. I clearly know what I am feelings.

You are not me. You do not understand exactly how I feel. I do not expect

you to understand, either.

If you are unwilling to share your own feelings and opinions, just forget my

post.

You said, " Do you have another problem we can hash over for days...get over

this one. "

I do not need you to give me a lecture regarding what to do and how to

feel.

I am here to share what happen and receive helpful responses. I do not post

here to ask you to hash over my problems. This kind response is very

inconsiderate.

How about your previous problems posted?

Do people here tell you to shot your mouth because you have so many

problems, job issues, abusive relationship issues, health issues, etc., and

keep on complaining?

I even posted much fewer problems than you did.

Have I or other people ever told you to get over your so many problems and

find another problem that we can hash over?

On Thu, Jan 21, 2010 at 12:24 PM, Lynna

<lynnanicholas@...>wrote:

>

>

> I, too, am curious about the circumstances that surrounded this request to

> see her legs.

>

> One of the things I learned in a peer counseling group for PWDs is to never

> tell somebody to " get over it " or to tell them how they should

> feel/react/respond. That's almost never helpful. It just causes people to

> stuff their emotions out of shame. It's ok to feel what we feel.

>

> Lynna

>

> <%40>

> From: hotwheels@... <hotwheels%40brainerd.net>

> Date: Tue, 19 Jan 2010 14:40:55 -0600

> Subject: Re: Educating others about CMT - no lies

>

>

> Maybe you should go to another church,

> How did the conversion start that he wanted to see your legs?

> Amway time to get on with your life, your experience is not devastating!

> Maybe he was a doctor!

> Is this another want a peek-a-boo or the same old thread?

> Do you have another problem we can hash over for days...get over this one.

> Who is he...I'll show him my legs.....lol

> I have had men try do worse things then that.!!!.

> Geri

>

> I met a shit in the church group.

>

> The shit, a disgusting man, requested to see my legs.

>

> I don't show anyone anything, unless I feel happy to do so.

>

> >

[Guest guest]

Thanks ......Glad you feel as I do......I explain CMT every chance I get!

The more people, on it goes, to docs, and who knows how far. We can travel with

this!!... count people that will donate to the cure. No telling! $$$$.

we are ahead of the game helping and doing our part. I have many times had

a doc show new students my CMT. This summer I going to let a teaching doc show

what CMT is. Don't have money. In fact I'm dirt poor..but I'm going to do what I

can to help! Not too proud to educate.....and let CMT be known. Can't wait for

the opportunity!!!!!!!

Blessings

Geri

[Guest guest]

Thanks Mark!

God Bless you Geri.

It's not easy telling anyone, let alone an accomplished doctor about this

disease. In fact, my Harvard educated PCP relies on me for updates, etc., about

this malady. Who would have thought that those of us afflicted with this disease

would have to be the messengers in order to get the word out. I thank God for

people like Dr. Shy who is spearheading the international consortium of

doctors and medical facilities as they attempt to find effective therapies and

cures for CMT1A. Without people like Dr. Shy, this whole malady would go on and

on without any hopes of finding any cures or therapies. Keep spreading the word.

I know at times it is very difficult.......especially getting over the " name

syndrome " part of the explanation, but it is worth the effort in the end.

Mark P. Boxshus

New England Support Group Leader

CMTA

[Guest guest]

God Bless you Geri.

It's not easy telling anyone, let alone an accomplished doctor about this

disease. In fact, my Harvard educated PCP relies on me for updates, etc., about

this malady. Who would have thought that those of us afflicted with this

disease would have to be the messengers in order to get the word out. I thank

God for people like Dr. Shy who is spearheading the international

consortium of doctors and medical facilities as they attempt to find effective

therapies and cures for CMT1A. Without people like Dr. Shy, this whole malady

would go on and on without any hopes of finding any cures or therapies. Keep

spreading the word. I know at times it is very difficult.......especially

getting over the " name syndrome " part of the explanation, but it is worth the

effort in the end.

Mark P. Boxshus

New England Support Group Leader

CMTA