Re: thankful for CMT?

[Guest guest]

,

You are thankful you have CMT?

Can you explain exactly why and or how having CMT makes your life

better?

I simply cannot imagine such a thing, unless your CMT is relatively

mild.

I could do without the pain, the pharmaceuticals and their side

effects, the difficulty and near impossibility of obtaining

appropriately, legally and correctly prescribed opiate medications due to the

(wide spread) assumption, particularly by law enforcement, that NOT ANYONE,

except for people on or just off of the operating table or cancer patients in

the days immediately before they die, NEEDS, and should not be prescribed,

opiate medications.

I could do without the labyrinthine system for obtaining these

appropriately prescribed drugs that leaves no room for error, like

say, a fentanyl patch that, upon attempted application by one with CMT affected

hands, becomes folded over on itself, rendering it unusable.

Similarly, I can do without the lasting psychological trauma of not

being able to keep up with peers, the difficulty in becoming employed, in

obtaining insurance, in becoming involved in a relationship with the opposite

sex, and the difficulty of finding common ground with men, as they run, surf,

ski, skateboard, snowboard, lift free weights, develop their careers, drink beer

and enjoy sports on TV, etcetera.

I'm sorry , but I cannot think of anything which would make me

glad I have CMT. In other words, there is NOTHING of redeeming value

in having a case of CMT. I actually have a problem with parents who

have CMT making babies who will likely have CMT. My parents did not

and could not have known that my mother was sending a defective X-

chromosome (I have CMT-X), but today's potential parents in many cases can know

of the danger.

And although there is more awareness about how to deal with a child

with CMT in school and at the doctor or hospital, purposefully

gambling that a child will NOT have CMT, when one or both parents are

genetically affected is a bet parents should not be allowed to make.

In these cases, adoption or in vitro fertilization of gametes known

not to be affected is the only choice CMT affected parents should be

allowed to make.

Passing on the genes responsible for CMT is a clear act of selfishness.

Or am I wrong? Are most on this board happy they have CMT? Are they

happy their children have CMT? These are good questions.

I would not wish this on even my worst enemy.

Sincerely,

On Jul 24, 2009, at 10:59 PM, fittness35 wrote:

> Hello,

>

> I am giving my experiences. .Working out is the best way for me to

> manage CMT. Yoga,pilates working out with weights,pool,stretching

> riding the staionary bike helps out alot. Its a choice. But with me

> im not hoping for a cure. Im thankful I have CMT.

>

>

>

> >

[Guest guest]

Wow, ,

I am in a way thankful for my CMT and I have a pretty severe case. I am

thankful because I learned compassion for those who are disabled. I have

learned to put others needs above my own.

Yes, I am a parent and I knew I could pass it on. I was told by a genetic

counselor that I could have a baby that could never walk, or one that was

perfectly healthy. I told the doctor that if my creator chose to give me a

child that couldn't walk, that he must think that Me and my child are very

strong people. Luckily, my child is healthy. I wouldn't want someone telling

me that I shouldn't have a baby because they might have CMT. I have had 21

surgeries and believe it or not, I love my life.

I am very thankful to my parents for teaching me that I could do anything I set

my mind to do. I became a special education teacher because f my compassion

for people with all types of abilities. I am no longer able to work because of

my CMT. But instead of sitting here feeling sorry for myself or criticizing my

parents

or any other parent, I am thankful that I could make a difference in the lives

of children for 4 and a half years.

I learned over the years that I can have an attitude of gratitude or be

miserable and feel sorry for myself. Guess what I chose? Every day I have to

ake that choice whether to put my hurting feet on the floor and get into my

wheelchair or stay in bed and be depressed. life is too precious to just be

angry or depressed all the time. Try that attitude of gratitude and maybe you

would be thankful and learn something from your CMT.

[Guest guest]

,

Hello! Im Thankful because God gave me this disese and I would not be the person

I am today with out having this disese.I dont have a mild case.I have CMT 1X.Im

a positive person and I foucus on the positive things.Im glad I have CMT .I go

through pain and it hurst but im reminded to look to God because he is awesome.

>

> You are thankful you have CMT?

>

> Can you explain exactly why and or how having CMT makes your life

> better?

>

> I simply cannot imagine such a thing, unless your CMT is relatively

> mild.

>

> I could do without the pain, the pharmaceuticals and their side

> effects, the difficulty and near impossibility of obtaining

> appropriately, legally and correctly prescribed opiate medications due to the

(wide spread) assumption, particularly by law enforcement, that NOT ANYONE,

except for people on or just off of the operating table or cancer patients in

the days immediately before they die, NEEDS, and should not be prescribed,

opiate medications.

>

> I could do without the labyrinthine system for obtaining these

> appropriately prescribed drugs that leaves no room for error, like

> say, a fentanyl patch that, upon attempted application by one with CMT

affected hands, becomes folded over on itself, rendering it unusable.

>

> Similarly, I can do without the lasting psychological trauma of not

> being able to keep up with peers, the difficulty in becoming employed, in

obtaining insurance, in becoming involved in a relationship with the opposite

sex, and the difficulty of finding common ground with men, as they run, surf,

ski, skateboard, snowboard, lift free weights, develop their careers, drink beer

and enjoy sports on TV, etcetera.

>

> I'm sorry , but I cannot think of anything which would make me

> glad I have CMT. In other words, there is NOTHING of redeeming value

> in having a case of CMT. I actually have a problem with parents who

> have CMT making babies who will likely have CMT. My parents did not

> and could not have known that my mother was sending a defective X-

> chromosome (I have CMT-X), but today's potential parents in many cases can

know of the danger.

>

> And although there is more awareness about how to deal with a child

> with CMT in school and at the doctor or hospital, purposefully

> gambling that a child will NOT have CMT, when one or both parents are

genetically affected is a bet parents should not be allowed to make.

>

> In these cases, adoption or in vitro fertilization of gametes known

> not to be affected is the only choice CMT affected parents should be

> allowed to make.

>

> Passing on the genes responsible for CMT is a clear act of selfishness.

>

> Or am I wrong? Are most on this board happy they have CMT? Are they

> happy their children have CMT? These are good questions.

>

> I would not wish this on even my worst enemy.

>

> Sincerely,

>

>

>

>

>

> On Jul 24, 2009, at 10:59 PM, fittness35 wrote:

>

> > Hello,

> >

> > I am giving my experiences. .Working out is the best way for me to

> > manage CMT. Yoga,pilates working out with weights,pool,stretching

> > riding the staionary bike helps out alot. Its a choice. But with me

> > im not hoping for a cure. Im thankful I have CMT.

> >

> >

> >

> > >

[Guest guest]

I can see both sides of being grateful, " I have CMT " . Yes, (duh!) I am

grateful I have CMT when I compare myself having stage 4 cancer or being

confined to a wheel chair. BUT, I cannot say too convincingly, I am thankful

I have CMT. At times it has been a real pain in the a-- -. When it shows

it's ugly head at times when I least expect it to. I am not thankful that

I can no longer play tennis, work out at the gym without paying the price

later, doing simple household chores without taking a pain reliever just to

get through the day. BUT in the grand scheme of things, YES! I will take

CMT over a thousand other diseases or illnesses. I like to always think

things could be worse. Perhaps that's an optimistic way to approach life.

I do have a hard time, though, saying out loud that I am thankful I have

CMT. To me, that's the equivalent of saying I am so glad I feel frustrated

and fed up at times when my health keeps me from doing the simple things I

love to do.

Karon

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[Guest guest]

This is a very important topic or at least it was an important topic for me

when my children were first diagnosed. I was really mad at my creator God and

felt that he had let me down. I really struggled with my belief in everything.

Now my beliefs have changed and are much more realistic and healthier for me.

Others need to believe differently and I understand that. We need to believe

what ever helps us get through this.

My thought now are:

My kids are not happy to have CMT and I am not happy that they have CMT. We

make the best of it, we have no other choice. Some people tell me they are

" blessed " to have healthy children. That hurts

me because I don't feel that my creator has unblessed my children. I certainly

don't believe creator gave CMT or any other health problem to anyone. I leave

creator out of this completely. Genetics and science stuff just happens. I do

hope that the scientists will find a treatment.

[Guest guest]

I never ever want to feel sorry that I have CMT. I went to a counsler before

because I felt sorry for my self and did not know how to deal with my

disability.I been teased before in school but you no what Im thankful today that

I have this disese.

[Guest guest]

I am all for having a positive attitude and I do. But if there was a cure, I

would take it in a heartbeat. Would I be thankful if I had cancer and say, " no

thanks " to treatment that might cure me? I don't think so. When bad things

happen to us, there is almost always a lesson learned. What doesn't kill us only

makes us stronger. But this CMT affects my husband as well. He has to do more

for me, push me around in a wheelchair, we can't go hiking together - which we

would love to do etc.. He is a doll and has never complained once. I accept my

CMT 100 percent. I don't mope. I don't cry. I just say, " oh well " . What else can

I do and live a happy life at the same time.

We all have our burdens.It must be very difficult for those, who have passed

this along to their children. Everyone hss the right to choose whether or not to

have children, of course. But if we choose not to, or our children choose not

to, could we wipe this disease off the face of the earth. That would be a tall

order. And I am sure many have this disease and do not even know it. CMT sucks.

But there are a lot of things that suck worse. And there is always someone worse

off than ourselves.

[Guest guest]

Ditto times 4 over here at my house.

In a message dated 7/26/2009 10:58:46 A.M. Pacific Daylight Time,

slumpville@... writes:

But if there was a cure, I would take it in a heartbeat.

[Guest guest]

In a message dated 7/26/2009 4:09:20 P.M. Pacific Daylight Time,

erinrachael76@... writes:

CMT made me stronger mentally and I'm thankful for everyone on this board

as well as the family and friends board.

Thank you for your wonderful attitude.

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[Guest guest]

,

I have a pretty bad case of CMT. My husband & I plan to have children within the

next few years.

Is my life all rose petals and tulips? No. Are there other people out there who

have it worse than I do? Absolutely. I'm incredibly thankful that I have CMT as

opposed to one of my friends who has stage 4 colon cancer or another who has

ALS. CMT made me stronger mentally and I'm thankful for everyone on this board

as well as the family and friends board.

[Guest guest]

Thankful of course, we are lucky since we were dealt with a neuropathy this is

the least of the evils, we can deal so much better than having CMT, ALS, the

list goes on and on..........Each day I am thankful for me and for my children

who also have CMT 1A.

Joyce

[Guest guest]

Hi ,

This is how  I feel too. I am grateful for who I am. I like myself, CMT or not

(wish not, but accept it anyway). I am probably a medium case, and I don't have

pain, which makes it easier to deal with the disease. Pain is very hard to

accept, but a walking disability is not that hard, I think. I chose to have a

child too. I have a recessive variant, and my son is healthy, but if he had CMT,

I woudn't mind. I have a good life, and I am happy, so there is a chance that a

child with CMT would do well in life too.

To stop someone from having a child because of a genetic disease is impossible.

We all carry genetic dieases. There is not one single person on earth who is

perfectly healthy. CMT is not the worst thing you can give your child. I can

think of worse things, like psycological diseases for example schizofrenia or

cancer. So it is totally unsafe to have a child! But people still have children.

Maybe it is selfish. Maybe every child born is the result of his or her parents

selfishness.But if everyone was thinking like that, there would be no children

at all. I do understand  the point though. While for most people a 5% chance  of

having a child with a life affecting disease is the case (I read this

somewhere), the CMT parent has got a 50% chance  (I think, in the dominant

cases) to have a CMT child. My friend who is healthy, had a genetic test of her

baby before it was born, for a lot of known diseases.

Personally, I didn't even care to test for CMT, when I was pregnant. I wouldn't

mind having a child with Down's or other diseases either. So it is an ethical

question. People feel differently about this.

It is easy to be grateful for CMT in the other aspect too, that you could have

something a lot worse! (Phew, I got away with a little CMT!) Also CMT is a good

excuse sometimes for not doing boring things that other people must do, like

vacuuming. It can be good when you want to stick out of the line too. People

remember you, while they forget other, less unique persons more easily.  

I think that the main issue with CMT is the pain management. Until that part is

solved, people will dislike being CMTers. So lets hope for a quick solution!

Beata

 

[Guest guest]

Diseases in general, and CMT specifically, are definitely not things for which

I'm thankful.

Nope, I'm finished being 'thankful' for diseases/sicknesses.

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