Re: Having children

[Guest guest]

HI , I have had 5 babies. I was in my 20's. I felt great with every

pregnancy. My back went out with 1 baby. The last month I was very heavy and

didn't do much walking. I had an epidural with 2 of them. One went great the

other was to strong put my whole body to sleep. I hated that. After all of

them I did have depression and my hands hurt from all the baby lifting. That

lasted about 5 or 6 weeks.

The best advice I can give you is don't think you won't have a child with CMT

think you may have a child with CMT.

I do not know if I would do it again 5 times but once for sure.

In a message dated 7/22/2000 10:56:56 AM Pacific Daylight Time, st@...

writes:

<< I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

>>

[Guest guest]

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

[Guest guest]

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

[Guest guest]

My father passed on, as well as CMT, a wicked sense of humour, a determination

to achieve, a love of life and the knowledge that I can do anything. He also

passed on a love of the arts - he paints, I write but our artistic side totally

understand each other. Suddenly CMT doesn't seem quite so important. He also

encouraged me in all sorts of things but most importantly just to be me.

Sue

Re: Having Children

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

[Guest guest]

, when ever I was considering getting married my fiance and I talked

about children. At that time I knew there was a 50/50 chance of my children

having CMT.

I had decided that my grandpa, dad and myself was doing just fine with having

CMT so I wasn't too concerned.

We had 2 yrs after we were married. During the pregnancy I had

horrible morning sickness for about 2 months. In my 7th month I stated

havng a sinsation of a pinched nerve in my spin. The doctors could never

find anything wrong. However when this nerve (or whatever) go pinched (or

whatever) I would loose my legs for a split second. Back then I had alot

better abilities for walking and standing and keeping my balance, so I never

actually hit the floor thank goodness. In my 9th month however it got worse

and I could never walk alone. Someone was always by my side.... The same

thing happened with my second pregnancy 3 years later.

With each pregnancy my legs did get weaker and I was more fatigued. At times

I could keep up with my daughter. But she was never allowed very far from me

since I couldn't run or move fast.

She learned to hug my body when ever I carried her so that my balance was

stable.

Oh, I guess I should tell you that in my family history I had a second cousin

that during childbirth was paralysed from the waste down for 6 months. The

doctors said it was becasue of the CMT. (nerves). I didn't know about this

until I was already pregnant with my son.

My hubby and I decided to adopt the rest of our children. So I had my tubes

tied.

We do have one adoted son (Jon).

CMT with kids growing up:

I think this is the hardest thing. It's very hard on the kids and it's hard

on me to see it affect them. My daughter does not show any signs of CMT.

(she only has week Knees). Mayby if had CMT it wouldn't have been so

hard on her.

She hates my CMT, she hates me for giving birth to her because of the CMT.

She hates the thought that she might have the gene and might pass on CMT if

she had children. The kids hate having to help me with housework because my

legs won't last. They hate having to wait for me. They hate that I can't do

thier car-pool or go on field trips with them like other moms.

I have problems with this also. I wish I could do those things, but the

fatigue can really be bad.

I wish I had known my great grandmother who had CMT.... Maybe then I would've

decided not to have children - but to adopt.

Apparently my great grandma raised her kids from a chair that she scooted

around on in the house. After she wore down the wood legs she would get

another chair.

I know that's there's going to be moms out there that disagree with this and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie

In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

writes:

> >Hi everyone,

I have got a question to those of you who have cmt and have decided to have

children:

I am 28 years old and I would like to have a child. What do I have to expect

during

pregnancy. I know, Kathleen told me a few months ago that there are women who

needed a wheelchair because of the fact they were pregnant. But I guess this

is the

worst case. What did you experience? And was it a question for you wheter

having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you take

medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

>>

[Guest guest]

In a message dated 7/23/2000 2:00:53 AM Pacific Daylight Time,

Moonglow21@... writes:

<< I know that's there's going to be moms out there that disagree with this

and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm

getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie >>

Jeanie, I think I speak for all of us when I say we are not here to judge you

for your feelings. I have days when I feel like I made a very very bad

decision. I have other days that go OK and I am think I made the right

decision. I have to think of my decision as an eternal plan and not just

this life. Eternally I made the right choice but that is not easy for this

life.

[Guest guest]

In a message dated 7/23/2000 2:00:53 AM Pacific Daylight Time,

Moonglow21@... writes:

<< I know that's there's going to be moms out there that disagree with this

and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm

getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie >>

Jeanie, I think I speak for all of us when I say we are not here to judge you

for your feelings. I have days when I feel like I made a very very bad

decision. I have other days that go OK and I am think I made the right

decision. I have to think of my decision as an eternal plan and not just

this life. Eternally I made the right choice but that is not easy for this

life.

[Guest guest]

The choice to have children is a tough one. I will tell you that I made that

choice. My choice is now a beautiful (healthy) 21 year old young woman. To have

not had her in my life would have been tragic. She is the light of my life. I

asked her today " Would you have rather had a healthy mom instead of a mom with

CMT. " She said " Well, I would have rather had a sane mom.(she is also a wise

guy). then she said " Did you do the best you could in raising me? " I said yes.

She said " So, There you go. " Make your decision for yourself. You know there are

many children who so desperatly need parents to love. Adoption is also a choice.

Hope this helps.

Theyskens st@...> wrote:

Hi everyone,

I have got a question to those of you who have cmt and have decided to

have children:

I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

---------------------------------

---------------------------------

[Guest guest]

The choice to have children is a tough one. I will tell you that I made that

choice. My choice is now a beautiful (healthy) 21 year old young woman. To have

not had her in my life would have been tragic. She is the light of my life. I

asked her today " Would you have rather had a healthy mom instead of a mom with

CMT. " She said " Well, I would have rather had a sane mom.(she is also a wise

guy). then she said " Did you do the best you could in raising me? " I said yes.

She said " So, There you go. " Make your decision for yourself. You know there are

many children who so desperatly need parents to love. Adoption is also a choice.

Hope this helps.

Theyskens st@...> wrote:

Hi everyone,

I have got a question to those of you who have cmt and have decided to

have children:

I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

---------------------------------

---------------------------------

[Guest guest]

The choice to have children is a tough one. I will tell you that I made that

choice. My choice is now a beautiful (healthy) 21 year old young woman. To have

not had her in my life would have been tragic. She is the light of my life. I

asked her today " Would you have rather had a healthy mom instead of a mom with

CMT. " She said " Well, I would have rather had a sane mom.(she is also a wise

guy). then she said " Did you do the best you could in raising me? " I said yes.

She said " So, There you go. " Make your decision for yourself. You know there are

many children who so desperatly need parents to love. Adoption is also a choice.

Hope this helps.

Theyskens st@...> wrote:

Hi everyone,

I have got a question to those of you who have cmt and have decided to

have children:

I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

---------------------------------

---------------------------------

[Guest guest]

In regards to having children! I was told that I had CMT at the age of 17,

I'm now 51. I was never told the whole story about CMT and the changes it

would have on me physically or if having children - what the chances that

they to would have CMT. I have 3 great kids. They are 31+, 30, and 23 now.

While they were growing up they helped me a lot and still do. My experience

has been (over all) positive in raising our kids. From the beginning when I

found out that I had CMT, I made a decission not to let CMT control my life

or my outlook on life. My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R.

>From: Moonglow21@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Re: Having children

>Date: Sun, 23 Jul 2000 04:59:29 EDT

>

>, when ever I was considering getting married my fiancé and I talked

>about children. At that time I knew there was a 50/50 chance of my children

>having CMT.

>I had decided that my grandpa, dad and myself was doing just fine with

>having

>CMT so I wasn't too concerned.

>We had 2 yrs after we were married. During the pregnancy I had

>horrible morning sickness for about 2 months. In my 7th month I stated

>having a sensation of a pinched nerve in my spin. The doctors could never

>find anything wrong. However when this nerve (or whatever) go pinched (or

>whatever) I would loose my legs for a split second. Back then I had alot

>better abilities for walking and standing and keeping my balance, so I

>never

>actually hit the floor thank goodness. In my 9th month however it got worse

>and I could never walk alone. Someone was always by my side.... The same

>thing happened with my second pregnancy 3 years later.

>With each pregnancy my legs did get weaker and I was more fatigued. At

>times

>I could keep up with my daughter. But she was never allowed very far from

>me

>since I couldn't run or move fast.

>She learned to hug my body when ever I carried her so that my balance was

>stable.

>Oh, I guess I should tell you that in my family history I had a second

>cousin

>that during childbirth was paralyzed from the waste down for 6 months. The

>doctors said it was becasue of the CMT. (nerves). I didn't know about this

>until I was already pregnant with my son.

>My hubby and I decided to adopt the rest of our children. So I had my tubes

>tied.

>We do have one adopted son (Jon).

>CMT with kids growing up:

>I think this is the hardest thing. It's very hard on the kids and it's

>hard

>on me to see it affect them. My daughter does not show any signs of CMT.

>(she only has week Knees). Maybe if had CMT it wouldn't have been

>so

>hard on her.

>She hates my CMT, she hates me for giving birth to her because of the CMT.

>She hates the thought that she might have the gene and might pass on CMT if

>she had children. The kids hate having to help me with housework because

>my

>legs won't last. They hate having to wait for me. They hate that I can't

>do

>their car-pool or go on field trips with them like other moms.

>I have problems with this also. I wish I could do those things, but the

>fatigue can really be bad.

>I wish I had known my great grandmother who had CMT.... Maybe then I

>would've

>decided not to have children - but to adopt.

>Apparently my great grandma raised her kids from a chair that she scooted

>around on in the house. After she wore down the wood legs she would get

>another chair.

>I know that's there's going to be moms out there that disagree with this

>and

>think that I'm not good.

>BUT, I wish I had made the decision not to have children at all. I see the

>pain that my selfishness has caused.... I'm not getting better... I'm

>getting

>worse.....

>I know that some moms with CMT do just fine.... I wish I had been one of

>them... My kids shouldn't have to take care of themselves and me..... I

>should be taking care of them..... But, I can't.....

>Oh yes, I was not on any medications when I was pregnant at all.

>Jeanie

>

>In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

>writes:

> > >Hi everyone,

>I have got a question to those of you who have cmt and have decided to have

>children:

>I am 28 years old and I would like to have a child. What do I have to

>expect

>during

>pregnancy. I know, Kathleen told me a few months ago that there are women

>who

>needed a wheelchair because of the fact they were pregnant. But I guess

>this

>is the

>worst case. What did you experience? And was it a question for you whether

>having

>children or not? How old were you when you had your child? What happened

>during

>pregnancy, did you have pain (I mean if you had pain before)? Did you take

>medicine

>like anti-depressants (prozac or so)?

>Thanks for your help.

>Best wishes from Germany,

>>>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

In a message dated 24/07/00 09:45:52 a.m. Pacific Daylight Time,

novanest@... writes:

<< My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R. >>

Kathy did any of your children get CMT?

jenny

[Guest guest]

Our daughter went through testing for carpel tunnel in her wrists and they

also tested her for CMT (because of me)and all came back negative for CMT.

Neither one of the boys show any signs of CMT either. I've talked to each

one of them about CMT. Of course they would not like to have CMT, but at the

same time, they have seen me not give up and let CMT rule how I live. Kathy

R.

>From: jacee17@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Re: Having children

>Date: Mon, 24 Jul 2000 20:12:49 EDT

>

>In a message dated 24/07/00 09:45:52 a.m. Pacific Daylight Time,

>novanest@... writes:

>

><< My family has been very supportive and our children

> have a compassion for other people because they grew up with a parent

>with a

> disability. Our 31 yr old daughter works in the medical field, the 30 yr

>son

> works with disable Vets, and our 23 yr old son is in the Military right

>now.

> With anything we do, whether it is to raise a family or day to day

>living,

> it's how you look at whether your glass is half full or half empty!

>Kathy

> R. >>

>Kathy did any of your children get CMT?

>jenny

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi ,

I had planned on having only one child and I did at age 33. My pregnancy

was easy. I even had surgery on an ankle in the 2nd trimester and was in a

walking cast for 3 months. I did not notice that it affected my leg

strength, but I gave birth at 33 weeks, so I did not experience being full

term. My water broke due to a strep infection, I was hospitalized and given

medication to prevent labor, but it came anyway after 4 days, so fast that I

couldn't be given any pain medication - ouch! My son was healthy and

weighed 4 pounds. Sometimes I think Providence was at work because he was

so easy for me to lift and carry until he got bigger. I also took care of a

friend's baby at the same time for some income while I stayed home.

Once kid's start moving around, then it gets harder and you have to think

ahead and take precautions. My son learned to come to me when he fell or

something, rather than waiting for me to come to him. I used a wrist

'leash' when we went out, or I wouldn't take him at all and let Dad watch

him. He does not have CMT and is now 12 years old. He has been a blessing

to me - is very understanding (most of the time) and helpful to me. I feel

he has learned a lesson that many people will never learn - how to be

considerate to those who have difficulties. He is impatient and says 'no'

sometimes, but he is also a pre-teen and I think that is natural. We have a

wonderful relationship.

My old orthopedist consulted with neurologists and told me my CMT was most

likely recessive, however, when my son was born I was told by the hospital

genetics dept. it was dominant - that was upsetting. I have not had any

testing.

I knew for sure that I would have no more children both for that reason and

after all the work with one, I didn't think I wanted to do it again. It's a

joy, but it's tiring.

That's enough. Hope that helps.

Melody

Having children

> Hi everyone,

>

> I have got a question to those of you who have cmt and have decided to

> have children:

>

> I am 28 years old and I would like to have a child. What do I have to

> expect during

> pregnancy. I know, Kathleen told me a few months ago that there are

> women who

> needed a wheelchair because of the fact they were pregnant. But I guess

> this is the

> worst case. What did you experience? And was it a question for you

> wheter having

> children or not? How old were you when you had your child? What happened

> during

> pregnancy, did you have pain (I mean if you had pain before)? Did you

> take medicine

> like anti-depressants (prozac or so)?

>

> Thanks for your help.

>

> Best wishes from Germany,

>

>

>

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

> Old school buds here:

> http://click.egroups.com/1/7081/13/_/616793/_/964288217/

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

>

>

[Guest guest]

This will be long.....

I feel I need to clarify something. Some of you don't know what I've been

dealing with in reguards to my family situation. Maybe what I'm about to tell

you will help you to understand that I am not a negative boo hoo cry baby,

there is a reason behind my depression.

This is nothing compared to last year... THANK-GOD!

Last month I was standing in my kitchen trying to cook dinner and had my

daughter get up from TV to get the dishes done. (They were in the sink and

all over the counter, this is my daughters only chore other than cleaning her

room). My daughter was doing her usuall complaining about the dishes when

ever I told her to just get them done. She turned to me and told me that if I

said another word she was going to hit me on the head with the pan. I told

her to watch her mouth. She said, what are you going to do about it after I

put you onto the floor.

I walked out.....

My husband was outside whenever this occurred, not that he would have done

anything if he had been in the room.

My daughter is 5'll " and about 200 lbs... Nothing to mess with.

I thought that part of her wsa over with after this last year. But, I guess

it's not.

That same day I got a phone call from my son's birth grandma and was talking

to her about my son and I driving up to their reunion in our small trailer

for the week-end. Jon flipped out whenever he realized that I was going

because, as he said, now I can't have any fun, now I have to take care of

you. I couldn't beleive my ears.

I told him that, yes, he would need to help some, but then he would be free

to run around.... He continued about how unfair it was for him to HAVE to

take care of me...

I never would've done anything like this to my dad or mom... I never did....

I never will... I just don't understand it. I know people say it's a phase

and it is. However my health is not capible to deal with the abuse and stress

it causes on me.... I have leaned highly on this support system with CMTUS

and need it. My family (hubby and kids don't get it) some of you do.... I

need to know that I'm not in the way, some of you give me that and that has

kept me fighting....

Whenever you have lived in a family like mine (I have no outside job or

freinds, just the internet that my husband hates me to be on lately) you

become what they say you are.... I have had to fight to keep my morals and

identity.... I will continue to fight....

[Guest guest]

This will be long.....

I feel I need to clarify something. Some of you don't know what I've been

dealing with in reguards to my family situation. Maybe what I'm about to tell

you will help you to understand that I am not a negative boo hoo cry baby,

there is a reason behind my depression.

This is nothing compared to last year... THANK-GOD!

Last month I was standing in my kitchen trying to cook dinner and had my

daughter get up from TV to get the dishes done. (They were in the sink and

all over the counter, this is my daughters only chore other than cleaning her

room). My daughter was doing her usuall complaining about the dishes when

ever I told her to just get them done. She turned to me and told me that if I

said another word she was going to hit me on the head with the pan. I told

her to watch her mouth. She said, what are you going to do about it after I

put you onto the floor.

I walked out.....

My husband was outside whenever this occurred, not that he would have done

anything if he had been in the room.

My daughter is 5'll " and about 200 lbs... Nothing to mess with.

I thought that part of her wsa over with after this last year. But, I guess

it's not.

That same day I got a phone call from my son's birth grandma and was talking

to her about my son and I driving up to their reunion in our small trailer

for the week-end. Jon flipped out whenever he realized that I was going

because, as he said, now I can't have any fun, now I have to take care of

you. I couldn't beleive my ears.

I told him that, yes, he would need to help some, but then he would be free

to run around.... He continued about how unfair it was for him to HAVE to

take care of me...

I never would've done anything like this to my dad or mom... I never did....

I never will... I just don't understand it. I know people say it's a phase

and it is. However my health is not capible to deal with the abuse and stress

it causes on me.... I have leaned highly on this support system with CMTUS

and need it. My family (hubby and kids don't get it) some of you do.... I

need to know that I'm not in the way, some of you give me that and that has

kept me fighting....

Whenever you have lived in a family like mine (I have no outside job or

freinds, just the internet that my husband hates me to be on lately) you

become what they say you are.... I have had to fight to keep my morals and

identity.... I will continue to fight....

[Guest guest]

Moonglo I dont know what to say to you but I want you to understand that

there are those who care . Do you have a pastor? There are caring church

groups somewhere for you or community support groups.I will think of you

often.I hesitate to say I will pray because it sounds so pompous or something

and you may not wish it but I do care.All of us have days when it seems hard

to go on but we must. Your kids need you as much as you need them tho they

will never say so.They also suffer for you and cant express it.Trust. Gwen

[Guest guest]

Jeannie,

Hi heart is breaking for you. You know kids can be a great joy ANd a great

source of heartache. I truly believe than can pick up that " thing " that most

irritates us and " work it " when they want. I wonder if they just pick on the

CMT and if you did not have that, it might be something else. I will be

praying for you.

a

PS Did you see, got on and wrote a response. She was watching me go

through me E mail and she said " let me respond to that on OK? " Whoa, is this

the same kid who left our support group in May?

[Guest guest]

I hope your daughter and your husband are drinking lots of ice water ... they

are going to need it, where they are going ...

[Guest guest]

Kathy, what a great letter.

Kathy and Chuck Robbins novanest@...> wrote:

In regards to having children! I was told that I had CMT at the age of 17,

I'm now 51. I was never told the whole story about CMT and the changes it

would have on me physically or if having children - what the chances that

they to would have CMT. I have 3 great kids. They are 31+, 30, and 23 now.

While they were growing up they helped me a lot and still do. My experience

has been (over all) positive in raising our kids. From the beginning when I

found out that I had CMT, I made a decission not to let CMT control my life

or my outlook on life. My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R.

>From: Moonglow21@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Re: Having children

>Date: Sun, 23 Jul 2000 04:59:29 EDT

>

>, when ever I was considering getting married my fiancé and I talked

>about children. At that time I knew there was a 50/50 chance of my children

>having CMT.

>I had decided that my grandpa, dad and myself was doing just fine with

>having

>CMT so I wasn't too concerned.

>We had 2 yrs after we were married. During the pregnancy I had

>horrible morning sickness for about 2 months. In my 7th month I stated

>having a sensation of a pinched nerve in my spin. The doctors could never

>find anything wrong. However when this nerve (or whatever) go pinched (or

>whatever) I would loose my legs for a split second. Back then I had alot

>better abilities for walking and standing and keeping my balance, so I

>never

>actually hit the floor thank goodness. In my 9th month however it got worse

>and I could never walk alone. Someone was always by my side.... The same

>thing happened with my second pregnancy 3 years later.

>With each pregnancy my legs did get weaker and I was more fatigued. At

>times

>I could keep up with my daughter. But she was never allowed very far from

>me

>since I couldn't run or move fast.

>She learned to hug my body when ever I carried her so that my balance was

>stable.

>Oh, I guess I should tell you that in my family history I had a second

>cousin

>that during childbirth was paralyzed from the waste down for 6 months. The

>doctors said it was becasue of the CMT. (nerves). I didn't know about this

>until I was already pregnant with my son.

>My hubby and I decided to adopt the rest of our children. So I had my tubes

>tied.

>We do have one adopted son (Jon).

>CMT with kids growing up:

>I think this is the hardest thing. It's very hard on the kids and it's

>hard

>on me to see it affect them. My daughter does not show any signs of CMT.

>(she only has week Knees). Maybe if had CMT it wouldn't have been

>so

>hard on her.

>She hates my CMT, she hates me for giving birth to her because of the CMT.

>She hates the thought that she might have the gene and might pass on CMT if

>she had children. The kids hate having to help me with housework because

>my

>legs won't last. They hate having to wait for me. They hate that I can't

>do

>their car-pool or go on field trips with them like other moms.

>I have problems with this also. I wish I could do those things, but the

>fatigue can really be bad.

>I wish I had known my great grandmother who had CMT.... Maybe then I

>would've

>decided not to have children - but to adopt.

>Apparently my great grandma raised her kids from a chair that she scooted

>around on in the house. After she wore down the wood legs she would get

>another chair.

>I know that's there's going to be moms out there that disagree with this

>and

>think that I'm not good.

>BUT, I wish I had made the decision not to have children at all. I see the

>pain that my selfishness has caused.... I'm not getting better... I'm

>getting

>worse.....

>I know that some moms with CMT do just fine.... I wish I had been one of

>them... My kids shouldn't have to take care of themselves and me..... I

>should be taking care of them..... But, I can't.....

>Oh yes, I was not on any medications when I was pregnant at all.

>Jeanie

>

>In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

>writes:

> > >Hi everyone,

>I have got a question to those of you who have cmt and have decided to have

>children:

>I am 28 years old and I would like to have a child. What do I have to

>expect

>during

>pregnancy. I know, Kathleen told me a few months ago that there are women

>who

>needed a wheelchair because of the fact they were pregnant. But I guess

>this

>is the

>worst case. What did you experience? And was it a question for you whether

>having

>children or not? How old were you when you had your child? What happened

>during

>pregnancy, did you have pain (I mean if you had pain before)? Did you take

>medicine

>like anti-depressants (prozac or so)?

>Thanks for your help.

>Best wishes from Germany,

>>>

>

________________________________________________________________________

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[Guest guest]

Kathy, what a great letter.

Kathy and Chuck Robbins novanest@...> wrote:

In regards to having children! I was told that I had CMT at the age of 17,

I'm now 51. I was never told the whole story about CMT and the changes it

would have on me physically or if having children - what the chances that

they to would have CMT. I have 3 great kids. They are 31+, 30, and 23 now.

While they were growing up they helped me a lot and still do. My experience

has been (over all) positive in raising our kids. From the beginning when I

found out that I had CMT, I made a decission not to let CMT control my life

or my outlook on life. My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R.

>From: Moonglow21@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Re: Having children

>Date: Sun, 23 Jul 2000 04:59:29 EDT

>

>, when ever I was considering getting married my fiancé and I talked

>about children. At that time I knew there was a 50/50 chance of my children

>having CMT.

>I had decided that my grandpa, dad and myself was doing just fine with

>having

>CMT so I wasn't too concerned.

>We had 2 yrs after we were married. During the pregnancy I had

>horrible morning sickness for about 2 months. In my 7th month I stated

>having a sensation of a pinched nerve in my spin. The doctors could never

>find anything wrong. However when this nerve (or whatever) go pinched (or

>whatever) I would loose my legs for a split second. Back then I had alot

>better abilities for walking and standing and keeping my balance, so I

>never

>actually hit the floor thank goodness. In my 9th month however it got worse

>and I could never walk alone. Someone was always by my side.... The same

>thing happened with my second pregnancy 3 years later.

>With each pregnancy my legs did get weaker and I was more fatigued. At

>times

>I could keep up with my daughter. But she was never allowed very far from

>me

>since I couldn't run or move fast.

>She learned to hug my body when ever I carried her so that my balance was

>stable.

>Oh, I guess I should tell you that in my family history I had a second

>cousin

>that during childbirth was paralyzed from the waste down for 6 months. The

>doctors said it was becasue of the CMT. (nerves). I didn't know about this

>until I was already pregnant with my son.

>My hubby and I decided to adopt the rest of our children. So I had my tubes

>tied.

>We do have one adopted son (Jon).

>CMT with kids growing up:

>I think this is the hardest thing. It's very hard on the kids and it's

>hard

>on me to see it affect them. My daughter does not show any signs of CMT.

>(she only has week Knees). Maybe if had CMT it wouldn't have been

>so

>hard on her.

>She hates my CMT, she hates me for giving birth to her because of the CMT.

>She hates the thought that she might have the gene and might pass on CMT if

>she had children. The kids hate having to help me with housework because

>my

>legs won't last. They hate having to wait for me. They hate that I can't

>do

>their car-pool or go on field trips with them like other moms.

>I have problems with this also. I wish I could do those things, but the

>fatigue can really be bad.

>I wish I had known my great grandmother who had CMT.... Maybe then I

>would've

>decided not to have children - but to adopt.

>Apparently my great grandma raised her kids from a chair that she scooted

>around on in the house. After she wore down the wood legs she would get

>another chair.

>I know that's there's going to be moms out there that disagree with this

>and

>think that I'm not good.

>BUT, I wish I had made the decision not to have children at all. I see the

>pain that my selfishness has caused.... I'm not getting better... I'm

>getting

>worse.....

>I know that some moms with CMT do just fine.... I wish I had been one of

>them... My kids shouldn't have to take care of themselves and me..... I

>should be taking care of them..... But, I can't.....

>Oh yes, I was not on any medications when I was pregnant at all.

>Jeanie

>

>In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

>writes:

> > >Hi everyone,

>I have got a question to those of you who have cmt and have decided to have

>children:

>I am 28 years old and I would like to have a child. What do I have to

>expect

>during

>pregnancy. I know, Kathleen told me a few months ago that there are women

>who

>needed a wheelchair because of the fact they were pregnant. But I guess

>this

>is the

>worst case. What did you experience? And was it a question for you whether

>having

>children or not? How old were you when you had your child? What happened

>during

>pregnancy, did you have pain (I mean if you had pain before)? Did you take

>medicine

>like anti-depressants (prozac or so)?

>Thanks for your help.

>Best wishes from Germany,

>>>

>

________________________________________________________________________

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------------------------------------------------------------------------

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[Guest guest]

Kathy, what a great letter.

Kathy and Chuck Robbins novanest@...> wrote:

In regards to having children! I was told that I had CMT at the age of 17,

I'm now 51. I was never told the whole story about CMT and the changes it

would have on me physically or if having children - what the chances that

they to would have CMT. I have 3 great kids. They are 31+, 30, and 23 now.

While they were growing up they helped me a lot and still do. My experience

has been (over all) positive in raising our kids. From the beginning when I

found out that I had CMT, I made a decission not to let CMT control my life

or my outlook on life. My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R.

>From: Moonglow21@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Re: Having children

>Date: Sun, 23 Jul 2000 04:59:29 EDT

>

>, when ever I was considering getting married my fiancé and I talked

>about children. At that time I knew there was a 50/50 chance of my children

>having CMT.

>I had decided that my grandpa, dad and myself was doing just fine with

>having

>CMT so I wasn't too concerned.

>We had 2 yrs after we were married. During the pregnancy I had

>horrible morning sickness for about 2 months. In my 7th month I stated

>having a sensation of a pinched nerve in my spin. The doctors could never

>find anything wrong. However when this nerve (or whatever) go pinched (or

>whatever) I would loose my legs for a split second. Back then I had alot

>better abilities for walking and standing and keeping my balance, so I

>never

>actually hit the floor thank goodness. In my 9th month however it got worse

>and I could never walk alone. Someone was always by my side.... The same

>thing happened with my second pregnancy 3 years later.

>With each pregnancy my legs did get weaker and I was more fatigued. At

>times

>I could keep up with my daughter. But she was never allowed very far from

>me

>since I couldn't run or move fast.

>She learned to hug my body when ever I carried her so that my balance was

>stable.

>Oh, I guess I should tell you that in my family history I had a second

>cousin

>that during childbirth was paralyzed from the waste down for 6 months. The

>doctors said it was becasue of the CMT. (nerves). I didn't know about this

>until I was already pregnant with my son.

>My hubby and I decided to adopt the rest of our children. So I had my tubes

>tied.

>We do have one adopted son (Jon).

>CMT with kids growing up:

>I think this is the hardest thing. It's very hard on the kids and it's

>hard

>on me to see it affect them. My daughter does not show any signs of CMT.

>(she only has week Knees). Maybe if had CMT it wouldn't have been

>so

>hard on her.

>She hates my CMT, she hates me for giving birth to her because of the CMT.

>She hates the thought that she might have the gene and might pass on CMT if

>she had children. The kids hate having to help me with housework because

>my

>legs won't last. They hate having to wait for me. They hate that I can't

>do

>their car-pool or go on field trips with them like other moms.

>I have problems with this also. I wish I could do those things, but the

>fatigue can really be bad.

>I wish I had known my great grandmother who had CMT.... Maybe then I

>would've

>decided not to have children - but to adopt.

>Apparently my great grandma raised her kids from a chair that she scooted

>around on in the house. After she wore down the wood legs she would get

>another chair.

>I know that's there's going to be moms out there that disagree with this

>and

>think that I'm not good.

>BUT, I wish I had made the decision not to have children at all. I see the

>pain that my selfishness has caused.... I'm not getting better... I'm

>getting

>worse.....

>I know that some moms with CMT do just fine.... I wish I had been one of

>them... My kids shouldn't have to take care of themselves and me..... I

>should be taking care of them..... But, I can't.....

>Oh yes, I was not on any medications when I was pregnant at all.

>Jeanie

>

>In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

>writes:

> > >Hi everyone,

>I have got a question to those of you who have cmt and have decided to have

>children:

>I am 28 years old and I would like to have a child. What do I have to

>expect

>during

>pregnancy. I know, Kathleen told me a few months ago that there are women

>who

>needed a wheelchair because of the fact they were pregnant. But I guess

>this

>is the

>worst case. What did you experience? And was it a question for you whether

>having

>children or not? How old were you when you had your child? What happened

>during

>pregnancy, did you have pain (I mean if you had pain before)? Did you take

>medicine

>like anti-depressants (prozac or so)?

>Thanks for your help.

>Best wishes from Germany,

>>>

>

________________________________________________________________________

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[Guest guest]

Oh , I soooo agree... Michele

[Guest guest]

Thanks, Michele ...

Did you see Bob's post ... ??? I love good, clear thinking like that. Thanks

again Bob.

[Guest guest]

Re: Having children

>Jeannie,

>

>Hi heart is breaking for you.

>>>> Mine too. I went through this last year with my then 16 year old son.

He is a changed person now, he helps me with everyting now. I found out

through lots of questions/talks, that he had such a fear of himself having

CMT!!!! When I was diagnosed, he started working out, to the extremes.

Since his little brother was diagnosed and after much talking his fears are

less. And his attitude is great. He is a changed kid. Maybe your daughter

is holding in fears of this happening to her? She resents the CMT, resents

your having it, resents the knowledge that she may some day have it too and

its just too many fears for her to handle? Have you talked with her about

the chances of her having it? Wish I could help more, but just know your

not alone, ~>Becky M.