Re: A man's perspective?

[Guest guest]

I have had to deal with CMT my whole life and I have a family that also suffers

CMT in various (sometimes vast) degrees. So I have been able to discuss things

throughout my life.

However, sometimes this does not make the fact that I have CMT any easier. One

of my questions would be whether, up till now, he has led a pretty much normal

life. I personally have never really been active in sports or able to do jobs

that require physical strength. Some of this though I think was due to my own

feeling of inadequecy and fear.

BECAUSE of my family, I was mentally given limitaions at a very young age and

throughout my life.

This isn't about me. Whether or not he's been aware of CMT or not. I think the

best advice that I could personally give would be 2 things:

Acceptance - This does not mean, " well, I'm screwed. " It means that you must

open your mind to the facts, so that you can move on in whichever direction is

nesesarry. This will open you up to the 2nd advice:

Adaptability - This could mean anything from a new career to buying a pair of

needle nose pliers to help hold stuff. Time to start thinking. Personally, I

still have too much of an ego for AFOs, but I am not experiencing what others

that rely on them need.

I dove into addiction and was not able to cope from an early age and my life up

until about 4 years ago showed for it. Now, I have a new outlook, and things

are better, much better.

All this is easy to say, but on a personal level. I really cannot say what goes

through the mind.

If he'd like someone to talk to on a personal level. let me know and I'll give

you my email. But please, only if HE wants to. Don't plead or nag him into it.

It needs to settle in awile before he may want to talk about it.

[Guest guest]

Well I can only speak for me and me only but I can

tell you this much.........It's hard for me being 32

and entering the advanced stages of CMT. I think

gender has a factor, like it or not women look to men

as being the stronger more masculine type. When you

can no longer lift things or walk well simple things

like having a hard time bringing in groceries takes a

shot at a mans ego. There are so many little things

we all take for granted that men differ from women in.

For example, if a woman dropped a grocery item, it is

assumed if a guy is right next to her he would pick it

up so when that scenerio happens and I ne is unable

too it is viewed different then if a women didn't.

Also holding the door open for someone or offering to

take the recylcing bin out is just a courtesy and when

a women is doing it because the man can't I imagine it

can hurt his ego some.

If he is married then I would hope it would not be as

much an issue but depends on the guy. Because CMT is

a hidden disease at times men have to overcome a lot.

I for one is not macho so it doesn't effect me as much

but me being single has it's hardships because many

women are attracted to a stronger masculine guy. Women

have different issues like wearing dresses or skirts

and high heels. Women may be more self conscious

about their appearance.

In all we all suffer in many similar ways but all I

can say is continue to be supportive and make him feel

he is not less a man.

Andy

[Guest guest]

Hi Tamara,

I've been affected by CMT to some extent my whole life, also older members of my

family were affected and I grew up watching them deal with life. As a result of

these experiences I tend to accept my limitations and live with them. Life as a

result gets pretty convoluted at times as I try to retain my independence, but I

essentially live with the changes to my body, sort of a plan for the worst and

hope for the best manner. Just kinda grit your teeth and press on. CMT is

frustrating if nothing else. I don't know how I would've reacted had the body

suddenly started failing for some unknown reason. I wish I could offer you

advice, but every individual is unique and what works for one with send someone

else over the edge.

Ed

[Guest guest]

OK I am a man with CMT. Diagnosed as a child with CMT Type X. All my

childhood docs told my parents to " expect the worst " - meaning to be

a wheelchair user.

I am now 55. I am not using a wheelchair, nor are AFOs needed. I

have some custom inshoe orthoses that balance out the uneveness of

my gait, and most people haven't a clue I've got CMT. I am a

businessman and real estate developer with several advanced degrees.

I was taught emotional generosity by my parents, and by my wife, who

died of ovarian cancer very young, leaving me with two ten year olds

to raise.

I had physical therapy quite often during high school, I also had

some " counseling " to help me with acceptance. Most of my high school

buddies were jocks, they accepted me 100%, and I attended every one

of their games. Growing up on the beach, it is normal to swim, surf

and play volleyball, all of which I did, and minus the surfing, I am

still a swimmer and a weekend or evening beach VB player. Nothing

competitive, just for fun. Swimming is my workout routine. (Not in

the ocean, but at the Y during the week)

I don't know what you mean by 'severe' exactly. I had foot surgery

young, I also popped a knee and had knee surgery once. Feet and

hands be damned, they still work, but my greatest assett is my brain

believe me.

Maybe my CMT is severe who knows? The Draft in 1970 classified me as

4F and that miracle alone kept me out of 'Nam where most of my

friends ended up and some never came back.

I believe in a wholesome life style, good healthy food, exercise, my

Vitamin E supplement. Living by the ocean in So. Cal. means eating

lots of fresh fish, fruits and vegetables, with some salsa, rice and

beans thrown in.

Life is what you make it. If muscle cramping or tremors or walking

are difficult, talk to your doc. There are many different solutions

and remember that NO ONE, not even the docs who are CMT experts,

can " predict " your course of CMT. It is uniquely yours, written in

your genetic code.

[Guest guest]

Good morning, I don't believe I am in the advanced stages but here is my

perspective. These would apply regardless of the advancement.

Tried, very tired. The mornings are the best for me. I have energy and want to

get things done. Then the afternoon comes and I get very tired. It is better

now that I am able to work from home a lot. The brain kills you after awhile

since you have to deal with not getting things done as fast. My last fence

project took 2 years to finish, now I have 5 different flooring projects to do.

From ceramic tile to laminate in my son's room. My wife is great in supporting

me. I don't get the nag treatment from her at all as she knows my limitations.

Evening's are good if I have had a short nap. A short nap is all it takes most

times. That gets me through the night. My hands and feet get tired throughout

the day and there are not many days that go by that I don't either drop

something or burn my hands. The burning feeling takes time to get to the brain

so we end up burning ourselves more frequent and worse then normal people.

Usually end up tripping a few times everyday so you hope that is not when you

are carrying anything. All these " little things " drive you nuts because you

know why they are there and you think every time what would it be like if I did

not have CMT.

OK, those are the little bad things that drive me crazy.

For me since I was not diagnosed until I was 32 that I had CMT, none of this

causes me to much damage since I am just glad to know why I am like this. I

spent many years wondering why I was screwed up. I finally got the answer and

now I take precautions/vitamins to help and I feel better then I ever have the

last couple of years.

Hope this all helps, let me know if you have any questions.

CMT1A

[Guest guest]

I am 62 and CMT reared up for me at age 55.

Living with it sucks!

After realizing it sucks, accept that it is what it is.

Life is a series of plans -- Plan A, Plan B, Plan C ...

I think I am on Plan J in my life.

Bill Veeck stated it best in his autobiography, He lost a leg in WW 2

and stumped around on a peg for the next 30 years. He said, " I'm not

handicapped, I'm only crippled. "

We need to find something we like and do it as long as we can. I build

model boats. As my hands deteriorated, I have gone to larger and

larger models were my fingers can work.

I also found two activities where my ^% & %*^ & %^$ legs don't matter. I

currently own a 35 acre farm, and driving around the place on a

tractor that go anywhere is bliss. The other activity is water

aerobics. While suspended by a flotation belt in water where my feet

don't touch, I am free to move and sweat without grunting and wheezing

while dragging limp legs supported my AFOs around.

I guess your husband needs to focus on whatever abilities he has on

every day he wakes up. Jim Heuga, Olympic medalist in Downhill Skiing,

developed MS. When The Wall Street Journal interviewed him and asked

how skiing has changed for him, he said, " I fall down a lot. "

He also got up a lot.

-- Larry

[Guest guest]

Having had CMT all my life (I'm 46, and my CMT IS severe), I won't deny there

are real frustrations. Aside from having a helping hand in life at times, it has

helped tremendously to have an organized, orderly life - that reduces

unnecessary frustrations.

However, life sucks in general - which can be good or bad, so you just have to

put everything in perspective. For example, who in the hell really cares whether

you can mow the lawn, or fix the screen door latch, or even change a light bulb?

(Oh, and buy those

light bulbs that shine forever) Nobody cares, really. Does anyone really believe

that Trump mows his own damn grass? Not me.

All this being said, guys with CMT are guys first, and as such, everyone deals

with life in a different manner. Nevertheless, my own experience, and opinion,

is that men - yes, even men with severe CMT - are pretty simple, and are easily

made happy, by having three

simple things: 1. SEX 2. Good food 3. His own little corner of the world (which

could be friends, an interest, etc.)

Best to your husband, and you.