Re: CMT through marriage advice

[Guest guest]

Sounds like your boyfriend has been very lucky with his CMT. Progression for

him may be slower than others or he may not have many problems at all. I

wouldn't assume that he is going to be an invalid (I don't think many CMTers

are). Many of us lead normal lives.

Generally, those that have more problems later on are the ones that present with

symptoms early in life. Sounds like your boyfriend didn't.

Up until the birth of my daughter, I was hiking 10 miles a day across hills and

mountains. It's only been recently that I've had to slow down (I'm 43). My

mother didn't slow down until she was about 70. One of my CMT brothers doesn't

seem to have much trouble at

all and he's 56. My other brother has troubles and has had them since an early

age plus he has the added burden of multiple sclerosis so...

Personally, I would never consider not having children

because they may be born with CMT. I'm very glad I'm here

I have one daughter and she is CMT-free by the genetic test from an

amnioscentesis although her feet look a little odd so I'm still wondering if the

test may have given a false negative. I tried for more children and did the IVF

thing -- not to keep away from the genetic issue but just to have more children.

It wasn't

successful. I also think that may have caused my CMT to progress from the drugs

used for that.

[Guest guest]

> Generally, those that have more problems later on are the ones that

present with symptoms early in life. <

,

I'd like to know where the above info came from. This is not

necessarily true, and certainly not true in my case. I consider my

symptoms at age 7 early, with a diagnosis at age 10. CMT has been

minimally, if at all, progressive in me. And I am now 53. Matter of

fact, my teen years were the worst years CMT symptom wise for me. I

don't have the pain I had then (and therefore not taking med for it) I

don't have the balance problems I had then - I strongly feel PT and my

exercise programs all these years have helped with that. In addition, I

do not fall as much - in my teens, I fell daily. Now maybe I fall a few

times a YEAR. Because of my early diagnosis and specialized treatment,

I feel I am in the best shape of my life right now, and I am including

CMT in this picture.

I feel it is extremely important for everyone to understand that CMT

manifests itself differently in all of us, and depends on our own

unique genetic code. It is also important to know that NO DOCTOR OR

OTHER PERSON can " predict " what a person's CMT will be like in the

future.

I feel the word " progressive " can be misconstrued sometimes, making one

extra-vigilant in watching symptoms appear and even attributing

something like a skinned elbow to CMT. Yes, I have read and studied

much about CMT, I know the literature says it is a " progressive "

syndrome. And while that literature refers to a progression in

symptoms, or can cause added severity, I just wonder if anyone has ever

challenged the medical establishment on what a " positive " progression

might me, and is it possible. It seems exactly so in my case.

Please do not misunderstand, I am not disrespecting you, or your

knowledge. I am sharing my life's experiences with youu in regards to

my own CMT.

Yes, we all live with " uncertainty " , but for me, life is joyous and a

one day at a time positive " adventure " . I learned early on that a

positive attitude, coupled with gratitude can be a powerful

restorative. Since adding Vitamin E, completely changing my diet, and

formally exercising in a taylor made program have created great changes

have taken place in my body and in my CMT. Again, let me stress -this

is based only on my personal experience.

~ Gretchen

[Guest guest]

I can't say the specific source and it wasn't implied as a given that you WILL

have more problems if you have problems early on. Maybe I should've used the

word " often " instead of " generally " . I have read it in more than one source

though. I do know that every time I

visit a new physician about my CMT symptoms they always ask how early did I

start noticing problems.

So, perhaps a misconstrued conclusion on my part.

I haven't heard from others that say they have less problems later on or a

" positive " progression as you are describing. They may not progress further but

I haven't heard of folks getting better so to speak. I don't think that's what

you're saying though either.

You've just found a regime that works for you.

Of course, my orthopedic surgeon just told me that NONE

of his CMT patients make a step-wise progression like I

told him had happened to me over the past year. He said it's always very slow

and even-paced -- we know that doesn't fit either

[Guest guest]

For me and my hubby it was no big decision what to do. we were newly weds

when I was diagnosed. we just figured we had been given one more thing to

handle and with God's help we would get through this. A sense of humor has

helped

us in day to day life. We are older sokids wasn't a issue for us however we

have family member who have more serious illnesses that they have past to thier

children. They made the decision that their love and understanding would get

them through. I feel the support we as a family give them helps, a little

love can go a long way. this is a decision you and your boyfriend must make to

have kids or not but with God all things are possible. Keep your expectations

resonable and your love strong. Good Luck. Cathleen in Arkansas

[Guest guest]

Jackie,

I was diagnosed at 18, but I have had symptoms for most of my life. Don't

let something like CMT ruin your relationship with a wonderful man. Life is

hard enough. It doesn't sound like your boyfriend has it too badly and it

probably won't progress too quickly. I have always had problems and I continue

too. My mom thinks she is starting to show symptoms of it at 55 years old.

Each person is different.

In regards to your concern about children, I have a perfectly healthy son.

Does he have CMT? I don't know. He doesn't show any signs of it, but

niether has my mother until now. He is the only child I have right now. Not

by my

choice. I went into my pregnancy with him knowing the risks, and I thought

back to how great and full my life was, even with the CMT. I played sports,

was in girlscouts, dated a lot, and went to dances and danced. I was a

normal child with a normal life. Guess what? I still have a normal life.

Sometimes, I need to rest more because of the fatigue. I also have to use a

wheelchair more often now, but that doesn't happen in a lot of cases. I was a

special ed teacher for 4 years. I feel that CMT gave me more compassion for

others. It wasn't a hinderance, in a way, it has been my blessing. I am a

stronger person because of it. I also have a good husband. He may not

understand a lot about CMT and he has his faults, but he loves me and my son

unconditionally. I know that he is in this for the long haul, because he loved

me

inspite of the CMT.

If you want to talk email me

Jen

[Guest guest]

Jackie,

I am 59 years old and was much like your boyfriend in my younger years. That

will change. I thought I might escape my father's fate if I exercised and

observed good health habits. He was forced to retire at 59 from a hard physical

labor job and mostly sat for the next 20 years until his death.

I am recovering from my second major reconstructive foot surgery and am very

optimistic about my remaining years. My CMT gradually and insidiously got

worse, in spite of my exercise and eating healthy most of the time. The

progression has been roughly the same for all my siblings--there were seven of

us and all but two have some variant of the disease--passed along from my father

and his mother.

Several of my nieces and nephews have CMT. I elected not to have children. I

live a great life and am happily married and I have CMT. Your boyfriend cannot

outrun CMT--he will develop more prominent symptoms with each decade of life.

You must decide if you want to live with this reality--for your boyfriend and

for your kids.

Tom

[Guest guest]

Hi Jackie,

How does your boyfriend feel about having children that may have CMT?

[Guest guest]

Any long term relationship is going to have ups and downs. CMT is

certainly a challenge, but there are also trade-offs. I am 33 and

have a beautiful two year old daughter.

I have had an active life but some symptoms over the past year are having me

re-examine my career.

There are challenges for my husband and I. He knew that I had CMT from the

beginning, but it is still difficult for him to

watch me adjust, and for him to do more cooking and housework since

I am too worn out.

On the other side, though, I have tremendous compassion, sympathy, and

creativity. I am not rushing past life.

I am a great companion for movies, quiet nights by the fire, and

watching sunsets. I would not be who I am if I had not had CMT.

When we decided to have Anika, we researched the current options and

there was a lot of hope for treatments and not a lot negative

pressure or fear. I certainly would not choose to have never been

born rather than life with CMT. It is a personal decision, of

course, and I wish you well.

The way I see it, everyone has something or another, and it is the

journey we choose to embark upon that matters.

Take care,

Lenka

[Guest guest]

Hello! I am so sorry that I havent written in a couple of days - what a week!

I just wanted to thank everyone for all of their advice and kind wishes. It has

truly been a great help to me! You are each so wonderful and I really appreciate

the time and thought

you put into each of your replies!

To answer some of your questions, my boyfriend is basically happy to go along

with anything that I feel comfortable with - which is beyond amazing. He does

not worry about having children with CMT because he sees how great his life has

been thus far despite CMT and with it. He would prefer, I believe, to have

children naturally.

And so basically, as I keep being told by friends and by my boyfriend, it is up

to me to make a decision. And for someone who has always struggled in the

decisivness department, this is quite a task. AND puts my boyfriend in a

terrible position as well. I hate for him to think, even for a second, that he

is anything less than the amazing person that he is.

It's tough because I am really trying to force myself to think about all

possibilities (of things that I have never thought about before) when all I want

to do is just have faith and go ahead with everything. I worry that the first is

neurotic and the later is too naive. And it is tough when I keep overthinking

things and am then reminded by my family how challenging things could be for us

in the future. The only difference here, I think, is that this is a challenge

that we know of in advance.

Thanks again!

.... Jackie