Re: Family does not discuss it.

[Guest guest]

Hi Fellow CMTers,

My family mostly does not discuss CMT, my wife never

discusses it with me. She just told me today that its hard for to talk to me

about it, yet she says she talks about it at work. I don't understand that.

My sister who does not have it and is a nurse, will talk about the disease

with me, but has never sat down and really asked me how I feel about having

it. She recently told me I have issues about having CMT and I'm angry, she

also said I need to talk to someone about that. I guess that means a

psychologist, I don't think I need that garbage. My daughter who is 24 has

CMT, but right now its very slight and seems not to affect her. She also does

not really discuss it. My father who is from Bangladesh does not really

comprehend what the disease does, just says I hope you get better. I'm sure

we all were angry when we found out we had CMT. So I try to deal with it on

my own the best I can. I guess people that are not handicap just do not know

how to deal with it. But being handicap has raised my awareness of others

that are more handicap than I am. I don't stare at them, and may even

approach them and ask them what they have and explain what I have. If I can

help them as far as opening a door or carrying something for them, or help

the reach an item on a shelf, I'm more than happy to help. We may be

handicap, but remember there is always someone worse off then ourselves, and

if you can help, lend a hand.

In Love & Light,

Al Hasim

[Guest guest]

Hi Fellow CMTers,

My family mostly does not discuss CMT, my wife never

discusses it with me. She just told me today that its hard for to talk to me

about it, yet she says she talks about it at work. I don't understand that.

My sister who does not have it and is a nurse, will talk about the disease

with me, but has never sat down and really asked me how I feel about having

it. She recently told me I have issues about having CMT and I'm angry, she

also said I need to talk to someone about that. I guess that means a

psychologist, I don't think I need that garbage. My daughter who is 24 has

CMT, but right now its very slight and seems not to affect her. She also does

not really discuss it. My father who is from Bangladesh does not really

comprehend what the disease does, just says I hope you get better. I'm sure

we all were angry when we found out we had CMT. So I try to deal with it on

my own the best I can. I guess people that are not handicap just do not know

how to deal with it. But being handicap has raised my awareness of others

that are more handicap than I am. I don't stare at them, and may even

approach them and ask them what they have and explain what I have. If I can

help them as far as opening a door or carrying something for them, or help

the reach an item on a shelf, I'm more than happy to help. We may be

handicap, but remember there is always someone worse off then ourselves, and

if you can help, lend a hand.

In Love & Light,

Al Hasim

[Guest guest]

Hi Fellow CMTers,

My family mostly does not discuss CMT, my wife never

discusses it with me. She just told me today that its hard for to talk to me

about it, yet she says she talks about it at work. I don't understand that.

My sister who does not have it and is a nurse, will talk about the disease

with me, but has never sat down and really asked me how I feel about having

it. She recently told me I have issues about having CMT and I'm angry, she

also said I need to talk to someone about that. I guess that means a

psychologist, I don't think I need that garbage. My daughter who is 24 has

CMT, but right now its very slight and seems not to affect her. She also does

not really discuss it. My father who is from Bangladesh does not really

comprehend what the disease does, just says I hope you get better. I'm sure

we all were angry when we found out we had CMT. So I try to deal with it on

my own the best I can. I guess people that are not handicap just do not know

how to deal with it. But being handicap has raised my awareness of others

that are more handicap than I am. I don't stare at them, and may even

approach them and ask them what they have and explain what I have. If I can

help them as far as opening a door or carrying something for them, or help

the reach an item on a shelf, I'm more than happy to help. We may be

handicap, but remember there is always someone worse off then ourselves, and

if you can help, lend a hand.

In Love & Light,

Al Hasim

[Guest guest]

Wow,first Jeanie, and then Al. I have always thought my family was so

disfunctional, not that they aren't, because I was either brushed off or

totally ignored when I was little and complained that I was different and

when I couldn't keep up with the other kids in the neighborhood. My sisters

and brother didn't care then and they don't care now. I feel they are in a

major case of denial, what you don't see, you don't have to accept. My mother

is in a wheelchair and I am forced to do most everything for her. My sister

and brother who live in the area do not help out, it's almost like they are

afraid to face the fact that they too might become like Mom and I. I don't

know.

My family: My husband has been angrierly awaiting my getting disability,

because with just his paycheck, all the " extras " we have enjoyed until I

could not work , are unaffordable now. I have tried getting other jobs, even

part-time ones, but unfortunately by the end of the first week, I am either

so exhausted, sore,or slow, I am either asked to quit or made to feel so

inadaquate, I do it on my own. Even though employers are not suppose to

discriminate, they do. Anyway, back to my family, my daughter is wonderful,

maybe too protective, and at 16, that's pretty great. My son is 8 and a

high-functioning autistic, who hasn't been tested for CMT yet, but shows

signs,like he has a hard time keeping up with the kids in his class....I'm

sorry, I'm off the subject again: He, my son, doesn't understand the concept

of CMT, and is very accepting of Mom's situation, as much as he can

understand.

So you see, Jeanie and Al, you are not alone, and it's good to know there are

others that have the same type of problems. Many Blessings, Michele

[Guest guest]

My Mom pretends I don't have it. Always has. That put me in a great state of

denile. When she come over and see me resting she asks me what wrong with me.

I still wonder whats wrong with her. She thinks depression is something you

can just get over by yourself. Shes a blamer. She always tells me I spend to

much time on the computer. I really think thats my business.

My Dad never mentioned it to me.

My sister Cathy a recovering addict has some understanding. Seems pretty easy

to talk to. She and My Mom go off and make jewelry together and other stuff

that I can't do. I keep thinking one day they will get a hobby I can do.

My sister Colleen thinks I should exercise until I get stronger and drink

ceratine.

My sister Tracey thinks god gave this to me to teach me a lesson. That she

will never get it because she is to good for it and God would never give it

to her or her children because she prays. She yelled at me as a kid for not

wearing high heels. Said it was all in my mind , LOL.

My sister Anne calls me handicapped in a nice way. She thinks anyway. I still

don't care for it. She is not being mean.

My husband says I am perfect and to hire

a house keeper if he can't take up the slack.

He does get moody at times.

[Guest guest]

My Mom pretends I don't have it. Always has. That put me in a great state of

denile. When she come over and see me resting she asks me what wrong with me.

I still wonder whats wrong with her. She thinks depression is something you

can just get over by yourself. Shes a blamer. She always tells me I spend to

much time on the computer. I really think thats my business.

My Dad never mentioned it to me.

My sister Cathy a recovering addict has some understanding. Seems pretty easy

to talk to. She and My Mom go off and make jewelry together and other stuff

that I can't do. I keep thinking one day they will get a hobby I can do.

My sister Colleen thinks I should exercise until I get stronger and drink

ceratine.

My sister Tracey thinks god gave this to me to teach me a lesson. That she

will never get it because she is to good for it and God would never give it

to her or her children because she prays. She yelled at me as a kid for not

wearing high heels. Said it was all in my mind , LOL.

My sister Anne calls me handicapped in a nice way. She thinks anyway. I still

don't care for it. She is not being mean.

My husband says I am perfect and to hire

a house keeper if he can't take up the slack.

He does get moody at times.

[Guest guest]

...

Is your Mom named Irene by any chance? She sounds just like my ex wife.

[Guest guest]

...

Is your Mom named Irene by any chance? She sounds just like my ex wife.

[Guest guest]

In a message dated 7/17/00 8:13:39 AM Eastern Daylight Time, Grmifo91@...

writes:

<<

Wow,first Jeanie, and then Al. I have always thought my family was so

disfunctional, not that they aren't, because I was either brushed off or >>

Add me to the list too! My family has definitely been dysfunctional and in

denial. Describing the details is a long story and not totally relevant to

the topic... But anyway, I was born with cataracts and had five eye

operations as a kid; because of this, I was always thought of as disabled in

many ways. For instance, I repeated first grade because after an eye surgery

(they were a lot more complicated and had a much longer recovery then than

they do now), my Mom didn't let me go to school for 3 months in case someone

hit me in the eye by accident. Anyway, when I was clumsy as a kid, it was

all blamed on my eyes and my coke bottle glasses/lack of depth perception.

I had 3 concussions.. I used to have terrible leg pains at night and

because it was an intense ache more than a direct pain, and because it

radiated into my back, I would try to limp to display the intense pain but

didn't limp correctly; because of this, they thought I was faking the pain to

get attention!! We'd ask the pediatrician about it, and he just said it was

" growing pains. "

I think the eye problems really detracted from anyone recognizing the

CMT. In fact, the nerve damage (still not formally diagnosed as CMT but I'm

sure it is), was not recognized until I tried to play lacrosse at age 15. It

should have been recognized much earlier because my foot drop and limp big

left toe (moves down but not up) both presented when I was about ten and

interfered with other sports (gymnastics and diving - not great at them, but

okay for a while).. My family was not very athletic as a whole, though, so

being clumsy did not signify any real problem in their eyes. By the time it

was clear tht there was a real problem, most of my siblings had left home

(I'm the youngest of four). My parents never really talked about it, as they

don't really discuss any pink elephants in the living room (there are a few

others). My Mom drove me to all the PT appt's, doctor's appt's and AFO

fittings but never really said much. I felt that, because of the earlier

cataracts experience and 13 years of coke bottle glasses, I'd been condemned

and was a burden presenting the family with nothing but expensive health

problems. It took several years for my self esteem to recover, and I think

it's still got a ways to go. The family was never really a source of

self-esteem. My father had a lot of problems and although always present and

loyal, made family life difficult. He is not an alcoholic but my family was

and is stlll, to some extent, a lot like an alcoholic family (chaos, denial,

all out to just survive).

My siblings now aren't too aware of the CMT and we don't talk about

it. But then again, we all live in different states and don't talk much at

all, period, save once or twice a year. I have an uncle who's a surgeon. I

tried to discuss it with him and he encouraged me not to get too wrapped up

in researching the CMT because it can be a " tar baby. " In other words, if

you can't really do too much about it, it's best just to leave it alone

instead of let it consume you and create more problems. He provided many

examples that he'd seen of this " tar baby " in the medical field over the

years. I understand that argument to a point... Yet, how different my life

may have been if the CMT was recognized earlier and I was introduced to

supports and to other kids with CMT? We are a strong family though.

Despite the CMT I have pushed myself to do a lot of challenging things and

I'll continue to do so as long as I can, however long that may be.

God Bless. - Marti

[Guest guest]

I am from a blended family. Mother died when I was 9. Leaving five children

ranging in age from 16 to 7. Dad a doctor remarried when I was 10. She had 4

children. I fell down a lot as a child. Just clumbsy I was told. Chosen last for

any sports called a Spaz. Used to go home crying. Just different I was told.

When I was in 9th grade told I had a form of Polio. Won't affect children. Has

some tendon transfers in both legs at the age of 17, still not told.Graduated,

and left home. Married a man I knew only 3 weeks, at the age of 19 he was 29.

Parents came for a visit after I was married for 5 years. Gave me a medical

record, said I should read this. Said I need a genetic counseler. Learned then

about CMT. Also learned from my Grandmother Dad knew about it since I was 10 or

11. We can't find anything in my family past. Spontanious Mutation. I have been

married for 27 years to the same man. We have a healthy 20 year old daughter. My

dad is dead. My step-mom is into her own life and ignores her granddaughter. She

still won't talk about my CMT. Brothers and Sisters ask questions when I see

them, they were told not to Talk about it growing up. Most of them live on the

East Coast. I live in Colo. I like it that way. My family is here. So different

we all are. I am fine with my CMT. I live life with my hubby and My daughter. I

think humor is my way of coping. So, everybody be well.

jacee17@... wrote:

My Mom pretends I don't have it. Always has. That put me in a great state of

denile. When she come over and see me resting she asks me what wrong with me.

I still wonder whats wrong with her. She thinks depression is something you

can just get over by yourself. Shes a blamer. She always tells me I spend to

much time on the computer. I really think thats my business.

My Dad never mentioned it to me.

My sister Cathy a recovering addict has some understanding. Seems pretty easy

to talk to. She and My Mom go off and make jewelry together and other stuff

that I can't do. I keep thinking one day they will get a hobby I can do.

My sister Colleen thinks I should exercise until I get stronger and drink

ceratine.

My sister Tracey thinks god gave this to me to teach me a lesson. That she

will never get it because she is to good for it and God would never give it

to her or her children because she prays. She yelled at me as a kid for not

wearing high heels. Said it was all in my mind , LOL.

My sister Anne calls me handicapped in a nice way. She thinks anyway. I still

don't care for it. She is not being mean.

My husband says I am perfect and to hire

a house keeper if he can't take up the slack.

He does get moody at times.

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

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

[Guest guest]

I am from a blended family. Mother died when I was 9. Leaving five children

ranging in age from 16 to 7. Dad a doctor remarried when I was 10. She had 4

children. I fell down a lot as a child. Just clumbsy I was told. Chosen last for

any sports called a Spaz. Used to go home crying. Just different I was told.

When I was in 9th grade told I had a form of Polio. Won't affect children. Has

some tendon transfers in both legs at the age of 17, still not told.Graduated,

and left home. Married a man I knew only 3 weeks, at the age of 19 he was 29.

Parents came for a visit after I was married for 5 years. Gave me a medical

record, said I should read this. Said I need a genetic counseler. Learned then

about CMT. Also learned from my Grandmother Dad knew about it since I was 10 or

11. We can't find anything in my family past. Spontanious Mutation. I have been

married for 27 years to the same man. We have a healthy 20 year old daughter. My

dad is dead. My step-mom is into her own life and ignores her granddaughter. She

still won't talk about my CMT. Brothers and Sisters ask questions when I see

them, they were told not to Talk about it growing up. Most of them live on the

East Coast. I live in Colo. I like it that way. My family is here. So different

we all are. I am fine with my CMT. I live life with my hubby and My daughter. I

think humor is my way of coping. So, everybody be well.

jacee17@... wrote:

My Mom pretends I don't have it. Always has. That put me in a great state of

denile. When she come over and see me resting she asks me what wrong with me.

I still wonder whats wrong with her. She thinks depression is something you

can just get over by yourself. Shes a blamer. She always tells me I spend to

much time on the computer. I really think thats my business.

My Dad never mentioned it to me.

My sister Cathy a recovering addict has some understanding. Seems pretty easy

to talk to. She and My Mom go off and make jewelry together and other stuff

that I can't do. I keep thinking one day they will get a hobby I can do.

My sister Colleen thinks I should exercise until I get stronger and drink

ceratine.

My sister Tracey thinks god gave this to me to teach me a lesson. That she

will never get it because she is to good for it and God would never give it

to her or her children because she prays. She yelled at me as a kid for not

wearing high heels. Said it was all in my mind , LOL.

My sister Anne calls me handicapped in a nice way. She thinks anyway. I still

don't care for it. She is not being mean.

My husband says I am perfect and to hire

a house keeper if he can't take up the slack.

He does get moody at times.

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

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

[Guest guest]

I am from a blended family. Mother died when I was 9. Leaving five children

ranging in age from 16 to 7. Dad a doctor remarried when I was 10. She had 4

children. I fell down a lot as a child. Just clumbsy I was told. Chosen last for

any sports called a Spaz. Used to go home crying. Just different I was told.

When I was in 9th grade told I had a form of Polio. Won't affect children. Has

some tendon transfers in both legs at the age of 17, still not told.Graduated,

and left home. Married a man I knew only 3 weeks, at the age of 19 he was 29.

Parents came for a visit after I was married for 5 years. Gave me a medical

record, said I should read this. Said I need a genetic counseler. Learned then

about CMT. Also learned from my Grandmother Dad knew about it since I was 10 or

11. We can't find anything in my family past. Spontanious Mutation. I have been

married for 27 years to the same man. We have a healthy 20 year old daughter. My

dad is dead. My step-mom is into her own life and ignores her granddaughter. She

still won't talk about my CMT. Brothers and Sisters ask questions when I see

them, they were told not to Talk about it growing up. Most of them live on the

East Coast. I live in Colo. I like it that way. My family is here. So different

we all are. I am fine with my CMT. I live life with my hubby and My daughter. I

think humor is my way of coping. So, everybody be well.

jacee17@... wrote:

My Mom pretends I don't have it. Always has. That put me in a great state of

denile. When she come over and see me resting she asks me what wrong with me.

I still wonder whats wrong with her. She thinks depression is something you

can just get over by yourself. Shes a blamer. She always tells me I spend to

much time on the computer. I really think thats my business.

My Dad never mentioned it to me.

My sister Cathy a recovering addict has some understanding. Seems pretty easy

to talk to. She and My Mom go off and make jewelry together and other stuff

that I can't do. I keep thinking one day they will get a hobby I can do.

My sister Colleen thinks I should exercise until I get stronger and drink

ceratine.

My sister Tracey thinks god gave this to me to teach me a lesson. That she

will never get it because she is to good for it and God would never give it

to her or her children because she prays. She yelled at me as a kid for not

wearing high heels. Said it was all in my mind , LOL.

My sister Anne calls me handicapped in a nice way. She thinks anyway. I still

don't care for it. She is not being mean.

My husband says I am perfect and to hire

a house keeper if he can't take up the slack.

He does get moody at times.

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

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

[Guest guest]

In a message dated 7/17/2000 11:35:12 AM Pacific Daylight Time,

oregonpapa@... writes:

<< ...

Is your Mom named Irene by any chance? She sounds just like my ex wife.

>>

Maybe they are sisters?

[Guest guest]

In a message dated 7/17/2000 3:17:56 PM Pacific Daylight Time,

mmc3737@... writes:

<< I have an uncle who's a surgeon. I

tried to discuss it with him and he encouraged me not to get too wrapped up

in researching the CMT because it can be a " tar baby. " In other words, if

you can't really do too much about it, it's best just to leave it alone

instead of let it consume you and create more problems. >>

One of my sisters thinks the less you know the less problems you'll have. She

also thinks that if you are trying to learn about your problem you are

obsessed...

I am so glad she and I don't speak!

[Guest guest]

In a message dated 7/17/2000 3:17:56 PM Pacific Daylight Time,

mmc3737@... writes:

<< I have an uncle who's a surgeon. I

tried to discuss it with him and he encouraged me not to get too wrapped up

in researching the CMT because it can be a " tar baby. " In other words, if

you can't really do too much about it, it's best just to leave it alone

instead of let it consume you and create more problems. >>

One of my sisters thinks the less you know the less problems you'll have. She

also thinks that if you are trying to learn about your problem you are

obsessed...

I am so glad she and I don't speak!

[Guest guest]

In a message dated 7/17/2000 3:17:56 PM Pacific Daylight Time,

mmc3737@... writes:

<< I have an uncle who's a surgeon. I

tried to discuss it with him and he encouraged me not to get too wrapped up

in researching the CMT because it can be a " tar baby. " In other words, if

you can't really do too much about it, it's best just to leave it alone

instead of let it consume you and create more problems. >>

One of my sisters thinks the less you know the less problems you'll have. She

also thinks that if you are trying to learn about your problem you are

obsessed...

I am so glad she and I don't speak!

[Guest guest]

Someone to relate to us in our CMT, must have great insight and empathy. Some

people cannot relate to any issues unless they experience it themselves. I

really saw this more when I had cancer than CMT. No one knew what to say and

would always try to be positive and make light of it. They were trying to

help me stay positive, when all I wanted was to speak of my fears and

concerns. They did not know how to discuss this. I believe it was also, a way

to block out their fears . Guilt perhaps that it is not them and how would

they deal with it...... I believe a lot of people just don't know how to

receive and relate into serious topics. All we want is to be HEARD. We don't

want sympathy, just understanding. Try and not take it, personally. This may

be their way of hiding and fighting their sympathy, fear or anger themselves.

We hear you Al and understand perfectly. You have a right to be angry. This

is a life altering disease. I find in myself, fighting anger at different

times in my life. It is never a battle to be won once and for all. For the

most part, I accept CMT and strive to overcome. When you need an ear, we are

hear for you......

From Indiana

[Guest guest]

Hello fellow CMTers,

Thanks for your Email response. That is why I joined

the group, to learn from other CMTers experiences. I now know that I am not

the only one struggling to overcome this disease. I am always looking for a

cure, and I am determined to find one. When I do (and I know I will), I will

share it with all of you. Until then I will not let this disease consume me.

May we all have the strength to fight it.

In Love & Light,

Al Hasim

[Guest guest]

Al

Good to see that you have a positive attitude. Hope it rubs off on me.

[Guest guest]

Al

Good to see that you have a positive attitude. Hope it rubs off on me.

[Guest guest]

In a message dated 7/19/00 12:06:49 AM Central Daylight Time, paceu@...

writes:

<< May we all have the strength to fight it.

In Love & Light,

Al Hasim

>>

We're with you Al.

Bless,

CMTer Bud in TX

[Guest guest]

In a message dated 7/19/00 12:06:49 AM Central Daylight Time, paceu@...

writes:

<< May we all have the strength to fight it.

In Love & Light,

Al Hasim

>>

We're with you Al.

Bless,

CMTer Bud in TX