Re: What are the chances of meeting a PE Aide with CMT?

[Guest guest]

,

I can sympathize with your situation. I am sure the lady was just trying to

help. There are many people with CMT in many professions with thin and fat

calves as well. I have normal looking calves but wear AFOs, use a wheelchair,

and use hand splints at night. I really don't believe that the way someones

calves look has anything to do with the severity of their CMT. I also can no

longer walk thru a crowded hallway easily. However up until last year, I taught

full time jr highschool special education. Although it was difficult, I

managed thru the halls in a school with over 1000 students. I know I

couldn't keep doing it so I am no longer teaching. Perhaps the aide's CMT

isn't as progressed as ours or your son's. I would get some literature from his

doctor and send it to her. She may have herself convinced that if she stretches

she wont be in a wheelchair out of fear. Talk to her yourself and see where she

is coming from. I know you want to protect Adam. I don't think she said

anything horrible, just not true. She may be scared herself.

[Guest guest]

Hi -Do you think maybe you're over reacting? The aide was trying to be

helpful. I can understand where she was coming from.I know when it comes to

our kids we react quicker but try to stay calm at the next school meeting. I

think it's great that he met another CMT adult actually who is obviously very

functional. Try to see it in the positive.

Why can't you walk down the halls at school if kids are in it? Just curious.

Barb

[Guest guest]

,

I don't know about your son's PE aide but I've found that a lot of people say

that they have Charcot-Marie-Tooth when, in actuality, they have Charcot foot or

other Charcot things

My PT asked if my high arches were typical for CMT. She said that another woman

at the center has " what you have " but she has very flat feet. I told her that,

most likely, she has Charcot foot especially if she also has diabetes. I live

in a fairly small community

and it would be rather unusual if other folks around here have CMT unless they

are related to me

The various problems named for Dr. Charcot don't help us much either. My mother

was treated by a PT for Charcot foot which actually exacerbated her CMT

symtpoms. My mother is 80 and didn't know enough to question what they were

having her do or that Charcot

foot even existed. I've also gone round and round with a podiatrist's

receptionist who continued to tell me that people with CMT have flat feet and

diabetes -- obviously, she had Charcot foot in mind. Thank God that the

podiatrist knew the difference

Granted, Charcot foot isn't inherited. The PT obviously has something that runs

in her family. I suppose she could have CMT (tightening tendons is definitely a

concern) but she may just have it to a much lesser degree than your family. In

any case, you might want to discuss it with her and let her know that you don't

appreciate her giving out 'medical' advice to your son -- nicely, of course.

I'm sure that she didn't mean any harm.

[Guest guest]

Thanks ,

I also thought about her not even having CMT. I assume she has

a different type. She tried to tell Adam it was X link inherited. She said

mother to son father to daughter. That is not our type at all. I want to speak

with her but I really want to talk to the Adaptive PE teacher to let him know

the aide in regular PE doesn't have a clue about CMT and it's varying degrees or

sub types. They may expect Adam to do more then he should be doing now. I am

very mad that she told him anything other the she had CMT too.

[Guest guest]

,

You brought up a VERY good point! I never thought her being scared.

I bet you are right tho. I was denial for years and made up all kinds of stuff

to help me stay in denial.

Thanks

[Guest guest]

In a message dated 4/8/2006 7:41:36 P.M. Pacific Daylight Time,

jcaston598@... writes:

Hi -Do you think maybe you're over reacting? The aide was trying to be

helpful. I can understand where she was coming from.I know when it comes to

our kids we react quicker but try to stay calm at the next school meeting.

I

think it's great that he met another CMT adult actually who is obviously

very

functional. Try to see it in the positive.

Why can't you walk down the halls at school if kids are in it? Just curious.

Barb

Hi Barb, I was worried about over reacting so I have not said anything to

her or to the list about this. I let a few weeks go by first. I do think she

was trying to help in her own way. She is just not educated enough about CMT to

be telling him anything. I do believe telling someone's child they will be

in a WC if they don't stretch is wrong. He has never been told he could end

up in a wheel chair before. I never wanted a bad stigma on a wheel chair

because in reality without AFOS he would be in one now. But what she said to

him

scared him so bad he cried and could barley tell me about it. He kept asking

me if he was going to be in a WC and when. He was also given wrong information

about how our type is inherited. He used to love to go to PE now he won't go

at all. I am not going to raise a ruckus because I don't want her to lose

her job , having CMT it is hard to even have a job. But I do want to let the

Adaptive PE know that she scared him. I have been running into CMT adults now

about once a year . I hope Adam can meet a child with CMT soon.

Sorry I made this so long.

Thanks

jenny

[Guest guest]

I work as an administrator in a public school system in Virginia. This

action is really unforgivable. In my system I would contact the Director

of Special Education or the Special Education Coordinator of the school

districte and discuss the incident.

Telling a child what you relate is just so ARRRGGGHHHH!!!!!

Larry.

>

> Adam was called over by a P.E Aide at his school. She told him that

she also has CMT and some of her family members also have it. Then she

told him that if he didn't do stretching he would end up in a wheel

chair like her aunt.

>

> Okay, I know she was trying to be helpful. She also told him if he

needed any help he could go to her. Adam said she showed him her big old

fat calves.

>

> The problem I hate to even say this because I know she was trying to

be

> helpful is that stretching won't keep a person out of a wheel chair. I

don't want the wheel chair to have a negative stigma on it.

>

> I don't want it used as a threat. During my next school meeting I am

going to have to bring this up. I have had to tell him NOT to listen to

her she obviously doesn't have our type of CMT or she wouldn't be a P.E

aide.

>

> I can't even walk down the halls at the school if kids are in it. Who

would have thought this could happen?

>

>

>

>

>

[Guest guest]

Yes, I agree, being that the aide is so young you need to choose words

carefully. I remember being diagnosed at 18, I was in denial. What young

adult wants to be in AFOs? It scared the crap out of me. I didn't have any

family members with it, so I didn't know what to expect. Now my mom seems to

be developing symptoms at 55 years old. I remember trying all kinds of hair

brained schemes trying to get rid of this. I remember convincing myself that I

could reverse it. Maybe give her some literature on CMT and tell her something

like this, " I heard you are part of the CMT family and I wanted to share

some information with you " and give her the link to this group.

If I can be any help email me privately and I can give u my number and we can

talk more.