Re: How can I prepare/not knowing

[Guest guest]

No one, including my doctor, has explained to me what I need to expect or be

prepared for. Keep in mind I just found out I have CMT this year and I travel 2

hours one way to see a doctor that knows anything about CMT. The not knowing is

really bothering me.

I'm still in my thirties and have two children left at home (two are g rown) and

I'm scared that I won't be able to complete my obligations. They really depend

on me and there are things I can no longer do for them or with them. For

instance, walking in the mall, working the concession stand at my daughter's

volleyball game, grocery shopping. I can't stand to be up on my feet that long.

If I attempt it, I'm up the entire night hurting.

[Guest guest]

-Gretchen is SO right. A doctor cannot predict how a persons CMT will

progress. I was diagnosed in Feb. 1971. I was only a few months past my 18th

b-day. First the diagnosis threw my entire family.No one before has ever had any

problems. Then I was told by the time you'll be in your 40's you will be in a

wheelchair. I did tell my doctor he'd lost his mind!!

Well, I'm very happy to say after 2 kids and now being almost 53 I just wear

AFOs!! Doctors mean well but they just don't know who or when or how the CMT

will progress for each person.

My theory is take one day at a time and enjoy it to the fullest.

Please try not to worry too much.

Barb

[Guest guest]

Dear ,

I know how you feel! It is scary thinking that you might not be able to be a

caretaker any more when you see that as your primary role. I think the key is

to plan. For example, if you know you want to shop, plan to spend no more than

2 hours without a break (maybe lunch) and then no more than another hour before

calling it quits. Then let everyone know that the rest of the day you must keep

your feet up or you will really hurt! Also, wear good shoes - they really do

help. I wear SAS shoes as they are not too heavy and are really comfortable.

I would not work the concession at the games. Is there something else you could

do sitting down? If you let the other moms know that you really hurt standing

up they will probably be ok with you doing something else, like maybe managing

the money?

I love to travel, but Ihave to pick what I want to do most when traveling. For

example, if we are in a new town do I want to walk the streets or see a museum

because doing both is not an option. I also have to stop and rest a lot, but

have learned I love to people-watch!

SO I guess the short answer is know your limitations and pick your battles!

Penny

[Guest guest]

Hi ,

Good question, and a difficult answer. It is next to impossible to

say how one's CMT will progress, when it will progress or if it will

progress. There isn't a doc on this planet that can " predict " that.

We, with CMT, are essentially writing our own medical histories as we

live.

When I was in my teens I sure thought my CMT would take me out (as in

death!) by the time I was 30 (30 seemed so OLD at the time) Then one

doc threatened me at age 27 telling me my CMT would progress so fast

that I would need a wheelchair at 30. That hasn't happened to this

day, twenty plus years later.

Matter of fact when I was 30 I started getting interested in exercise

and found benefits with aerobics and also did yoga then.

I've lived with CMT just about my whole life and have just kept on

putting one foot in front of the other, learned to relax, to pace

myself, take breaks, makes TO DO lists (including stuff like house

and work stuff - helps me see what I need to do and then I can " plan "

to do it)

I am also a morning person, so this means I am physically, mentally,

and emotionally stronger then. Also more creative then. So I cram

alot into my mornings and as the day goes on, I still can accomplish

much, but during the later part of the day, I look over my lists and

do less challenging things (like read mail, catch up on news, etc)

Not knowing how CMT will progress in me used to really, really scare

me. Somewhere along the line I got tired of being so scared, and I

guess after reading CMT newsletters, I just dropped that feeling of

fear, since I would take a physical " inventory " of my body now and

then and still notice I was walking, exercising, etc.

So, my suggestion would be to take life one day at a time, plan just

for that day. Make notes, break up tasks you need to do, pace

yourself, etc. And don't forget to laugh and have fun while your at

it. Very good for keeping stress low.

~ Gretchen

[Guest guest]

always enjoy your thoughts. i found this saying recently and wanted to share

it.

" The pessimist complains about the wind: the optimist expects it to change: the

realist adjusts the sails. "

Arthur Wod

GfijiG6@... wrote:

Hi ,

Good question, and a difficult answer. It is next to impossible to

say how one's CMT will progress, when it will progress or if it will

progress. There isn't a doc on this planet that can " predict " that.

We, with CMT, are essentially writing our own medical histories as we

live.

When I was in my teens I sure thought my CMT would take me out (as in

death!) by the time I was 30 (30 seemed so OLD at the time) Then one

doc threatened me at age 27 telling me my CMT would progress so fast

that I would need a wheelchair at 30. That hasn't happened to this

day, twenty plus years later.

Matter of fact when I was 30 I started getting interested in exercise

and found benefits with aerobics and also did yoga then.

I've lived with CMT just about my whole life and have just kept on

putting one foot in front of the other, learned to relax, to pace

myself, take breaks, makes TO DO lists (including stuff like house

and work stuff - helps me see what I need to do and then I can " plan "

to do it)

I am also a morning person, so this means I am physically, mentally,

and emotionally stronger then. Also more creative then. So I cram

alot into my mornings and as the day goes on, I still can accomplish

much, but during the later part of the day, I look over my lists and

do less challenging things (like read mail, catch up on news, etc)

Not knowing how CMT will progress in me used to really, really scare

me. Somewhere along the line I got tired of being so scared, and I

guess after reading CMT newsletters, I just dropped that feeling of

fear, since I would take a physical " inventory " of my body now and

then and still notice I was walking, exercising, etc.

So, my suggestion would be to take life one day at a time, plan just

for that day. Make notes, break up tasks you need to do, pace

yourself, etc. And don't forget to laugh and have fun while your at

it. Very good for keeping stress low.

~ Gretchen

[Guest guest]

,

Well said. I too tried to be " like every other mother " . After a day at the zoo,

I would come home and pass out. I tried to be like the others and than I

overheard my 3 year old (who is now 17) say to a friend when asked why does your

mommy walk so funny and he said very matter of factly, she has bad legs and they

went on playing.

In the long run, it has made him a much more caring sensitive boy who does not

feel deprived of anything because of mom being disabled. Sometimes I do feel

guilty that he worries about my future (since I am a single parent and alone)

but I show him everyday that NOTHING will get or break his mom down!

Jackie

[Guest guest]

,

Thanks for the words of encouragement. I'll admit I'm struggling right now. I

visited the doctor today (a wasted trip). My stress level is so high I'm either

going to blow up or hit bottom. Everyone think good

thoughts for me because I really need it.