Re: Help! Any suggestions on explaining CMT

[Guest guest]

In a message dated 11/24/2001 7:35:34 PM Pacific Standard Time,

butterflypower@... writes:

> If you do, please let me know! I'm so tired of trying to explain and

> having no one get it! Thanks!

>

>

I have an idea. If she continues to show lack of understanding tell her you

don't do kitchen duty anymore.

jenny

[Guest guest]

Hi ,

I am nearly forty years old and my Mum is still in denial over the fact that I

need to be accomodated differently with my CMT. I have just returned from a

very nice lunch with my Mum and Dad and I have come home tired and

frustrated at my Mum's lack of understanding. She had brought up the

subject of me being seen by a friend using a wheelchair and what was wrong

that I needed to do so, she told her friend that was not so I only occasionally

used a scooter at the supermarket. I made the decision at that point to tell

her that this week I was picking up my own travelling chair which I will use in

various situations.

What I am trying to say is this is all part of living with CMT just

accept your Mum cares for you but just can't recognise the implications of

CMT. My best advice is accept it don't fight it as it only causes misery for

both

sides. Long term as you get older you will be able to organise your own

things with CMT in mind.

Palombo

[Guest guest]

Hi ,

I don't know if this will help, but what I do when someone (including

family members) doesn't understand, is to use anologies, um, like ok.

" It takes me 20 times as much energy as you, to bend over and reach the

bottom drawer. So everytime I do it once, you would have to do it 20

times to understand how exhausting it is for me to do it ONE TIME! "

I hope this will help for you, I empathize with your frustration.

Good luck and hang in there girl!

peace & love

Judy g.

shannon marzinski wrote:

> Hey everyone,

> Hope everyone in the US had a Happy Thanksgiving!

> I am having a bit of a problem lately and I am wondering if anyone

> has any advice.

> It seems to me that I am having a hard time explaining to my mom

> what I need and how to help her understand it. We have disagreements

> over little things. Earlier it was about how when things that I use

> often

> are

> on bottom cabinets, it's hard on my ankles and legs to have to

> continually

> reach down to get them rather than just put them up on top shelves or

> cabinets. But by my needing it different to make it easire, it seemed

> to

> interfere with her method of organization. Does anyone have any

> suggestions on how to explain why we need different things with CMT to

>

> those that don't have CMT?

> If you do, please let me know! I'm so tired of trying to explain and

> having no one get it! Thanks!

> ________________________________________________________________

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[Guest guest]

Hey i loved the kitchen duty idea

However I don't want to get grounded

for 'disobedience'

Oh well

thanks for the thought

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[Guest guest]

,

Yeah I guess it's just something I will have to just

get along with...

But it does make things tough!

OH WELL

Thank you!

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[Guest guest]

Judy,

hey thanks for that suggestion

I might try that out

and see how it works

MUCHAS GRACIAS THAT'S THANK YOU!

sHANNON

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[Guest guest]

hi, ,

i joined this group because i have a friend who has CMT and i want to understand

him better. i know that it is really difficult for you and sometimes, it's

difficult for us to understand your situation. but does your mom tries to

understand or gain information about your CMT? maybe, if she has all the

information, she will understand you. i know that it takes a lot of courage,

but i guess that it really helps when people around understands you. see you!

Richlyn

Judy Piersol <stronggirl2@...> wrote: Hi ,

I don't know if this will help, but what I do when someone (including

family members) doesn't understand, is to use anologies, um, like ok.

" It takes me 20 times as much energy as you, to bend over and reach the

bottom drawer. So everytime I do it once, you would have to do it 20

times to understand how exhausting it is for me to do it ONE TIME! "

I hope this will help for you, I empathize with your frustration.

Good luck and hang in there girl!

peace & love

Judy g.

shannon marzinski wrote:

> Hey everyone,

> Hope everyone in the US had a Happy Thanksgiving!

> I am having a bit of a problem lately and I am wondering if anyone

> has any advice.

> It seems to me that I am having a hard time explaining to my mom

> what I need and how to help her understand it. We have disagreements

> over little things. Earlier it was about how when things that I use

> often

> are

> on bottom cabinets, it's hard on my ankles and legs to have to

> continually

> reach down to get them rather than just put them up on top shelves or

> cabinets. But by my needing it different to make it easire, it seemed

> to

> interfere with her method of organization. Does anyone have any

> suggestions on how to explain why we need different things with CMT to

>

> those that don't have CMT?

> If you do, please let me know! I'm so tired of trying to explain and

> having no one get it! Thanks!

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

>

>

[Guest guest]

Richlyn

Thanks for your suggestions! She knows info on CMT, and reads up on it

and really is interested but sometimes her interest doesn't turn to

actions. It's hard because I can't understand what it's like from a non

CMT position and she can't really know what it's like from a CMT

position!

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[Guest guest]

hi shannon,

i am happy to receive a message from you. oh, well...i think that many

things are easier said than done. i imagine that it's really difficult to cope

with a balance diet and everything. truth is, i'm beginning to like somebody

who has CMT. i haven't met him but i found a way to know something about his

rare illness. well, i find him nice and intelligent. but as i read from some

of you who told that your bones brittle and pain and stuff...i begin to

wonder...can a CMT person capable of making love? i think that i have not much

information about this. hehe...)))))

Richlyn

shannon marzinski <butterflypower@...> wrote: Richlyn

Thanks for your suggestions! She knows info on CMT, and reads up on it

and really is interested but sometimes her interest doesn't turn to

actions. It's hard because I can't understand what it's like from a non

CMT position and she can't really know what it's like from a CMT

position!

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