Re: Helping my grandson

[Guest guest]

Thanks for the welcome

My grandson is reallly not coping right now. He refuses all medication and I am

afraid there may be street drugs involved in his actions. One reason I wanted to

join is because he says he has a very rare form of CMT and will die by the time

he is 35. I can find no information to rebut or confirm this idea of his, and

that is why I am so intent on gathering any information I can.

My grandson had a very upsetting and confusing childhood to say the least. My

oldest daughter his aunt has him staying with her right now and is trying to

help him where she can, so I funnel anything I find out to her.

This whole thing is breaking my heart am truly desperate for answers. Anywhere

anyone would point me I am willing to go.

Sorry this is so long just tryin to clarify where I'm at in the situation. Any

help will be greatly appreciated. If not just listening to what you all share

seems to help somehow, like I'm not alone anymore trying to understand all this.

Thanks

Peggy

[Guest guest]

Hi Peggy,

It seems your grandson might be " running " from the fear of 'what will

happen'. I did this myself for years. It is unfortunate so many of us

get so scared with future projections for CMT. There isn't a doctor or

other health professional that can 'predict' how CMT will play out in

our lives.

Street drugs won't help CMT, neither will denial. There are so many

different 'types' of CMT - I have never heard of one that is so 'rare'

that it would cause death at 35. Street drugs alone can cause a death

much earlier.

Sounds like your grandson is crying out for help, but doesn't know the

right way to ask, or even what to ask.

~ Gretchen

[Guest guest]

Hi Peggy,

My son is 23 he has CMT 1B the same as I do and I am 48. Will be 49 in a month.

I have had signs of CMT since a very young age. My son didn't show any since of

CMT until he went through puberty. His foot started to turn in on him. When he

was 18 he had an operation to correct it. He does not have to wear braces or

need any other means of help.

I do understand how you feel not knowing what to do to help him.I

also understand his thinking. Not that by any means his thought are the right

ones.I had a very tough time with my son when he found out.I just kept talking

to him and getting him to understand

the disease.Oh believe me it was not easy.But he will come around in his time

and it does have to be his time.You are doing a very good thing in joining this

group it is very helpful.It is good he has you and his aunt trying to help him.

Do you know what type of CMT he has? Not sure were he got the idea he

was not going to live passed 35. Like I said I'm going to be 49 and still doing

everything I want.Yes some thing are a little harder then others but I do them

the way I can and they do get done.

I do think it is a little harder for guy to except the fact they have

a disease it is just a guy thing. But he will come to understand it on his time

like I said.

Take care

Sherry

[Guest guest]

Hi Peggy and Welcome,

My sister who is now 70 years young, has had CMT since she was 16. I am 63

and have CMT also, and I have been told it is not a fatal disease. My oldest

grandson is 19 and has CMT also. He has had surgery on his feet and still

keeps smiling. He has such a positive attitude about life and CMT. I know my

grandson would love to hear from yours. Maybe he could help in some way. If

you

think it will help, just let me know.

God Bless,

Kathy in Minnesota

[Guest guest]

Peggy,

I have never heard of a form of CMT that will kill you especially at a early

age. Are you talking about some form of Muscular Dystrophy ? Most people with

CMT live long lives. Sounds like your grandson needs some counseling. Get him to

join the group so he can learn about CMT.

Bob

[Guest guest]

Hi Peggy:

I'm sorry to hear that your grandson is having difficulty dealing

with his CMT. Even though he was lying to maybe get some sympathy,

I think we have to pay attention when kids,or anyone else for that

matter, tells lies regarding something happening in their lives.

Maybe he doesn't know enough about CMT to understand that he doesn't

need to fear dying from it.

I have raised two boys (now 23 and 22) who never really lied much, but if they

did tell a fib it usually meant that they were having trouble dealing with the

reality of the situation.

My oldest son (23) has CMT and has gone through a full range of emotional

responses to acceptance. Everything from denial to anger to accusation to an

acceptance that really isn't complete even yet. He also started exhibiting

symptoms at about 15 and was really too young to handle what he thought was

going to ruin his life. Now, at 23, he is studying to be a doctor of physical

therapy. Although he has never said so, I feel that he chose this path because

of CMT and the way it has affected our family.

He and I both believe that CMT is very manageable through proper diet, exercise

and rest and I believe that by choosing a career such as PT he is trying to give

himself the opportunity to stay healthy and educate others.

I wish that I could get my son to correspond with your grandson, but he probably

wouldn't. Not because he's not a nice guy, but because that is facing it just a

little too fully yet. So, I guess what I'm saying is this is probably not the

first or the last emotional reaction that your grandson will exhibit with the

diagnosis of CMT. Try to be patient with him and as open as possible to talking

about CMT with him.

Sorry this got so long, but my heart always hurts a little more for the young

ones. Good luck.

[Guest guest]

Hi Peggy

I do so much agree with everything has written to you

I to could not get my son to talk to your grandson because he is

not at that point to be able to talk to other people about CMT.

I'm sure my son has told me a fib or two, but that is the way the

to deal with some things

I do not know your grandson and the life he has lived,but the lying could

be his way of coping with everything. He does need your help so what

every you do not give up on him.You just have to get him to understand

things better about the CMT.I'm sure it is not easy for you or his aunt.

But do not give up on him he needs you's all no matter how hard he

tries to tell you differently.I wish you all the luck.

Take care

Sherry

[Guest guest]

Most people with type IA have mild symptoms. He might need AFOs or

have probs with his hands. It will not be fatal. In fact he will probably have a

normal lifespan maybe even longer than normal according to the local MDA doctor

here. Maybe he was freeked out by the diagnosis of CMT and that it is a type of

MD. He should be able to live a fairly normal life with it. I do and my friends

with it do too.

Bob

[Guest guest]

Peggy,

If you think it might help any, I'd be willing to talk to your grandson, in

like a pen pal sort of way. I know it won't help with some of the problems,

but sometimes it helps to have someone your own age who is going through the

same sort of thing.

I'm 22, just graduated college, and I've had CMT since I was 3.

Liz

[Guest guest]

Peggy,

I am so impressed that you signed on to to help your Grandson. I have

always wished that my Mom would take an interest in educating herself so she

could know more about CMT. I have CMT and 3 of my children have it. I have 5

children total. How is your Grandson doing?

[Guest guest]

Hi again Peggy

I was told I would be dead by 40 and in a wheelchair by 25. It is very possible

that your grandson was told some garbage about CMT. At his age no wonder he

feels so awful. My son is 17, he really struggles with CMT and all the baggage

that comes with it , so I really understand how you feel.