Re: Our children and our children's children

[Guest guest]

<< " Well, the CMT is part of who I am, and my friends like me for who I am.

So, like, it's okay, Mom. " Whereupon she resumed reading her Drew book

as she extended her foot, much like Cinderella awaiting her glass slipper. >>

Barbara, very nice story.

I also agree with your conclusions. I see no reason for you to go after a

more specific dx now. None at all. Many CMTers don't even know it they are

type 1 or 2, let alone one of the 20-odd subdivisions within those basic

types, and they are getting along fine. There is no treatment available for

any of the types at this time.

Kat

[Guest guest]

<< " Well, the CMT is part of who I am, and my friends like me for who I am.

So, like, it's okay, Mom. " Whereupon she resumed reading her Drew book

as she extended her foot, much like Cinderella awaiting her glass slipper. >>

Barbara, very nice story.

I also agree with your conclusions. I see no reason for you to go after a

more specific dx now. None at all. Many CMTers don't even know it they are

type 1 or 2, let alone one of the 20-odd subdivisions within those basic

types, and they are getting along fine. There is no treatment available for

any of the types at this time.

Kat

[Guest guest]

<< For me having children is more a question if I could handle it because

bringing up a

child is more than giving birth to it. And I don't know if I have the

strength to do it

because of cmt. I mean I often have problems with depression and at the

moment (perhaps this will change in one or two years) I wouldn' t be a good

parent because of my own problems. But even without the depressions there are

still the other problems as pain and fatigue and so on. >>

Dear ,

Something to add to the mix is the possiblity that a woman's CMT may/can

exacerbate her CMT. I don't say it WILL, just that it can and may. I've met a

couple of CMT women who say they felt better during pregnancy, and many who

said it made no difference to their CMT, but I've met dozens who say their

CMT progressed rapidly during and often after their pregnancy. Some who were

getting around quite well before had to use a wheelchair during and sometimes

after the pregnancy. Some who had minor hand problems before had serious hand

problems after. Post partum depression may happen, and the CMT fatigue can

make caring for a crying infant or a toddler very difficult and stressful.

I assume the stress to the body during pregnancy is the culprit.

Each person makes her own choice, but should be aware of all the

possiblities. Most doctors don't mention this possiblity - they mostly focus

on the risk of the baby inheriting, not what it might do to the mother. We

can't know until it's too late if we will progress faster due to pregnancy.

Whether or not to have children is the decision for the husband and wife to

weigh and to decide.

I'm not saying whether or not a person should choose to have children, only

that there can be complications for CMTers to consider.

Kat in Seattle

It does not matter how slowly you go, so long as you do not stop.

- Confucius

[Guest guest]

<< For me having children is more a question if I could handle it because

bringing up a

child is more than giving birth to it. And I don't know if I have the

strength to do it

because of cmt. I mean I often have problems with depression and at the

moment (perhaps this will change in one or two years) I wouldn' t be a good

parent because of my own problems. But even without the depressions there are

still the other problems as pain and fatigue and so on. >>

Dear ,

Something to add to the mix is the possiblity that a woman's CMT may/can

exacerbate her CMT. I don't say it WILL, just that it can and may. I've met a

couple of CMT women who say they felt better during pregnancy, and many who

said it made no difference to their CMT, but I've met dozens who say their

CMT progressed rapidly during and often after their pregnancy. Some who were

getting around quite well before had to use a wheelchair during and sometimes

after the pregnancy. Some who had minor hand problems before had serious hand

problems after. Post partum depression may happen, and the CMT fatigue can

make caring for a crying infant or a toddler very difficult and stressful.

I assume the stress to the body during pregnancy is the culprit.

Each person makes her own choice, but should be aware of all the

possiblities. Most doctors don't mention this possiblity - they mostly focus

on the risk of the baby inheriting, not what it might do to the mother. We

can't know until it's too late if we will progress faster due to pregnancy.

Whether or not to have children is the decision for the husband and wife to

weigh and to decide.

I'm not saying whether or not a person should choose to have children, only

that there can be complications for CMTers to consider.

Kat in Seattle

It does not matter how slowly you go, so long as you do not stop.

- Confucius

[Guest guest]

Barbara,

Beautiful story... What else can I say?

Ruth

>From: ranagan@...

>

>My daughter said it more beautifully than I. I was on my hands and knees

>struggling to strap on her leg braces. We were fighting because she was

>not cooperating, and Alice exploded in tears:

>

> " Yeah, well how would you know. You don't have CMT. You don't have to

>wear braces. "

>

>I sat back on my legs and said, " You're right. I don't know. I wish I

>did. I wish

>I could wave a magic wand and make it go away. You know, honey, if a

>doctor told

>me that he could make you better but that the cure would cost a fortune, I

>would

>sell our house and give that doctor every single penny we have to take away

>your

>CMT. I would ...

>

> " Um, Mom? "

>

> " Yes? "

>

> " If he took away my CMT, he would be taking away all my friends. "

>

> " How's that? "

>

> " Well, the CMT is part of who I am, and my friends like me for who I am.

>So,

>like, it's okay, Mom. " Whereupon she resumed reading her Drew book

>as

>she extended her foot, much like Cinderella awaiting her glass slipper.

>

>Best wishes to all,

>Barbara

>

______________________________________________________

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[Guest guest]

Barbara,

Beautiful story... What else can I say?

Ruth

>From: ranagan@...

>

>My daughter said it more beautifully than I. I was on my hands and knees

>struggling to strap on her leg braces. We were fighting because she was

>not cooperating, and Alice exploded in tears:

>

> " Yeah, well how would you know. You don't have CMT. You don't have to

>wear braces. "

>

>I sat back on my legs and said, " You're right. I don't know. I wish I

>did. I wish

>I could wave a magic wand and make it go away. You know, honey, if a

>doctor told

>me that he could make you better but that the cure would cost a fortune, I

>would

>sell our house and give that doctor every single penny we have to take away

>your

>CMT. I would ...

>

> " Um, Mom? "

>

> " Yes? "

>

> " If he took away my CMT, he would be taking away all my friends. "

>

> " How's that? "

>

> " Well, the CMT is part of who I am, and my friends like me for who I am.

>So,

>like, it's okay, Mom. " Whereupon she resumed reading her Drew book

>as

>she extended her foot, much like Cinderella awaiting her glass slipper.

>

>Best wishes to all,

>Barbara

>

______________________________________________________

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[Guest guest]

Hi Barbara,

I understand your point concerning having children someday.

I am 28 years old and I do not have children. At the moment I can't say if I

ever will

have children.

My problem with having children is not the fact that they could have cmt because

I

believe if a responsible parent knows about the disease of his child he/she will

bring up

the child in a way the child can cope with the disease and life. It is not just

a believe

it more is a hope that parents will act this way.

For me having children is more a question if I could handle it because bringing

up a

child is more than giving birth to it. And I don't know if I have the strenght

to do it

because of cmt. I mean I often have problems with depression and at the moment

(perhaps

this will change in one or two years) I wouldn' t be a good parent because of my

own

problems. But even without the depressions there are still the other problems as

pain and

fatigue and so on.

A few weeks ago I had a discussion with my mother about having children.

She said that she would be able to bring up a child even with cmt and I said

that I am

not sure if I am able to do this.

But I have to say the following concerning my mother:

She was 21 years old when she was pregnant with me and she didn't know that she

had cmt.

She didn' t even show signs of cmt (means she didn' t have pain in her back or

had

walking problems or things like that). After my birth the doctors told my

parents not to

have children anymore because they knew that boys could get the disease (lucky

me, I

wasn' t a boy :-) ). But this was 1971 and hardly anybody knew about cmt and the

genetics. So, nearly 30 years ago my mother was in good condition to bring up a

child.

When she found out about cmt (this was 1981) a hard time for my family began.

When

something went wrong it was because of her disease. When I was 16 she took me to

a

neurologist to find out if I had cmt. Eventhough she knew what the disease meant

for her

she was not interested in helping me arranging my life that I could live with it

in a

normal way. At that time she started drinking and it was only herself she was

interested

in. Otherwise she could have told me to take a job that would make me happy. I

have

studied economies and I started working as a productmanager but because of my

bad

condition I am not able to do this anymore. More than that I only should work

for 4 hours

a day as my doctors told me (I work the whole day).

So, if she told me she would be able to bring up a a child I had my own thoughts

about

it.

This shows that everyone thinks different about this topic. I guess important is

how

someone can live his life with cmt. If you don' t have much stress because of

your work

or your family perhaps cmt will not make you so much trouble so it is quite

normal for

you to have children. Other people (like me) have to learn to live with it and

then they

can decide.

And what is more important: when your daughter has grown up more will be

possible because

of the research. Perhaps then doctors can " make " a child that will not have cmt

(I mean

by taking the good genes of your daughter).

Best wishes,

ranagan@... schrieb:

> From: ranagan@...

>

> In the last two weeks I have taken my daughter (age 8) to Hopkins (Baltimore)

> and duPont (Wilmington, DE) for orthopedic evaluations. She has CMT type 2

> which was determined on the basis of an EMG (electromyography) and a NCV

> (nerve conduction velocity test). Virtually every doctor I've seen asks why

> we haven't had additional tests or biopsies performed to home in on the

diagnosis.

> Because my daughter is mine by adoption (and is from India) we do not have

> access to her birth or family medical history, which is probably helpful in

> diagnosing CMT. So, I do sympathize with these doctors who want to feel more

> certain of the diagnosis. Still, I see no reason to subject my daughter to

> additional tests, some of which are painful, if the benefits do not outweigh

the

> costs. I am always careful to ask if the alternative diagnoses (e.g. Distal

> Spinal Muscular Atrophy) would make any difference in managing the disease.

> They always say " No, but she might like to know so that, down the road, she

> can decide whether or what she wants to do about having children herself. "

> Well, at eight years of age, this does not seem to be a good enough reason

> to have another EMG or a sural nerve biopsy. In another 20 years, they might

> be able to get an accurate diagnosis by having her place her hand, palm down,

> on a special magnetic pad that delivers a computerized read-out.

>

> I have a more fundamental objection to this reason that she should be tested

> so that she can decide whether to have children. Although I fully believe

> in a woman's right to choose, indeed because I believe as much, my daughter

> should make the decision to have these additional tests when she becomes a

> WOMAN. But, while she is a child, what kind of message am I sending her by

> having tests performed that will indicate whether she will pass her disease

> on to her children? What does it say to her about the value of her life?

> I hope she decides to have children someday so that she will know the joy that

> she has brought to my life. I would see it as an affirmation that her own

life

> is worth living.

>

> My daughter said it more beautifully than I. I was on my hands and knees

> struggling to strap on her leg braces. We were fighting because she was

> not cooperating, and Alice exploded in tears:

>

> " Yeah, well how would you know. You don't have CMT. You don't have to wear

braces. "

>

> I sat back on my legs and said, " You're right. I don't know. I wish I did.

I wish

> I could wave a magic wand and make it go away. You know, honey, if a doctor

told

> me that he could make you better but that the cure would cost a fortune, I

would

> sell our house and give that doctor every single penny we have to take away

your

> CMT. I would ...

>

> " Um, Mom? "

>

> " Yes? "

>

> " If he took away my CMT, he would be taking away all my friends. "

>

> " How's that? "

>

> " Well, the CMT is part of who I am, and my friends like me for who I am. So,

> like, it's okay, Mom. " Whereupon she resumed reading her Drew book as

> she extended her foot, much like Cinderella awaiting her glass slipper.

>

> Best wishes to all,

> Barbara

>

[Guest guest]

In a message dated 2/11/00 7:03:55 AM Pacific Standard Time, ranagan@...

writes:

<< Well, the CMT is part of who I am, and my friends like me for who I am.

So,

like, it's okay, Mom. " Whereupon she resumed reading her Drew book as

she extended her foot, much like Cinderella awaiting her glass slipper.

Best wishes to all,

Barbara >>

Wow what a kid

jenny

[Guest guest]

What a beautiful and wise little one you have, we also adopted a little

girl, brought her home from the hospital when she was born, she is now 6,

and tells every one she talks to that daddy is going back to school cause

his thumbs dont work, and needs a new job so he wont get hurt, as Art would

say : kids say the darndest things " TONY

Our children and our children's children

>From: ranagan@...

>

>In the last two weeks I have taken my daughter (age 8)

>

>

>---------------------------