Re: To exercise or not to exercise.

[Guest guest]

In a message dated 9/24/2000 7:05:28 PM Pacific Daylight Time,

kayc32@... writes:

<< The recent discussion about the pros and cons of exercise relating to CMT

has given me some food for thought. I’ve lived 29 of my 34 years with the

knowledge that I have CMT. I have never in all of these years come across a

professional who has advised me against exercise. In my opinion for a

professional to advice against exercise borders on negligence. >>

Exercise for someone with CMT can also be everyday stuff. Sometimes that is

enough for me.

jenny

[Guest guest]

Exercise is important to our over all health and sense of well

being. To

> not exercise puts one at greater risk of developing heart disease

and other

> potentially life-threatening problems, which pose a greater threat

to an

> individual than CMT. I suspect that many of us tend to prioritize

our CMT

> issues over other health issues. We get specialists who work on

our feet,

> another who works on our nerves, and yet another that merely fills

out the

> disability paperwork. It's not surprising that we forget to

look

at

> ourselves as a whole. We think about how our feet feel today, or

our knees

> or our hips, but how do we feel as a whole person, body and soul.

I think

> to neglect that whole being is more harmful to the quality of life

than any

> course CMT may run.

>

> I do agree that as CMT progresses certain types of exercise can be

harmful

> and may cause an exacerbation of symptoms. But in no way should

that mean

> curtailing all exercise. If a leg becomes too weak to exercise

the

> traditional way then alternative regimes can be explored to focus

on other

> parts of the body that will still benefit from a workout. Exercise

does not

> have to mean aerobics or jogging, for even the frailest of

bedridden

> patients benefit from passive range of motion type exercise.

AFO's

and

> wheelchairs don't mean the end of exercise.

Hi, , Carolyn here. Thank you for an excellent post. I would

simply add that Balance seems to be the key. For me, it's very easy

to overdo and end up in pain. Pain makes me want to quit! Also, I'm a

very impatient person in some respects. Patience is, for me, very

important. Patience to start very slowly, so as not to hurt myself,

then to increase the exercise level slowly, always remembering that I

didn't get this way in a day, therefore I'm not going to get better

in a day either.

Thanks again, Carolyn

[Guest guest]

MY PT TOOK SOME STRETCH TUBING,CUT GARDEN HOSE FOR HANDLES,AND VOILA ! I HAVE

EXERCISE EQUIPMENT THAT I CAN USE.ITS LITEWEIGHT AND FLEXIBLE AND DOESN'T TAX

MY WEAKENED WRISTS. HE DEVISED A SERIES OF VERY SIMPLE STRETCHING AND PULLING

EXERCISES TO STRENGTHEN THE MUSCLES I HAVE.IT SEEMS TO BE HELPING

[Guest guest]

-----Original Message-----

From: cmontana@... <cmontana@...>

egroups <egroups>

Date: Monday, September 25, 2000 5:44 AM

Subject: [] Re: To exercise or not to exercise.

, always remembering that I

>didn't get this way in a day, therefore I'm not going to get better

>in a day either.

>

>Thanks again, Carolyn

>

>

>>>>>Right, but this makes me think about those who like me, were very

active and worked out 3-5 times per week at a local gym most of their lives

healthy active good muscle tone. Then we start noticing muscle

weakness/problems realted to muscle weakness, then comes the DX of CMT, we

stay active and slowly or quickly, like me lose more muscles. We did not

just site down and say oh my I can't move anymore I'm an invalid! We tried

to even build up more muslce and for our efforts we lost the battle,

progressed fast. I just do what my body allows me to do with out pushing,

anyway thats all I can do at this point for I will never again push myself

to this fast progression. I have lost to much too fast as it is. And it

was after my bull headedness to not slow down and to keep up a good exercise

plan that 6 weeks to 3 months later I find the very muscles I was working

and trying to keep/build up have gone forever! Plus other muslces that were

ok! For me the more I use the more I lose, and am only trying to help, not

talk any one out of exercising. Just stateing what happened to me. And

hope others are aware it could happen to them. And that would be a shame if

it did. There are others here on this list who are the same way, the more

they use the more they lose, its not just me. Wish we knew the reason for

it. Other than just a CMT quirk, its not fair to some who have always lived

an active life to know some still can and some still exercise but for us its

a No-No ~>Becky M.

[Guest guest]

To , and all,

To exercise or not has been an issue. I use to body build... up to just a

weeek or so ago I was spinning 3-4 days a week and doing step aerobics, kick

boxing and the like whenever I could find a class. Now I am told I may be

doing more harm then good and I could see where doing traditional exercise

could do more harm then good. What about swimming or Tia Chi???

Exercice just make me feel so good I don't want to give it up!

Donna

----- Original Message -----

From: " C " <kayc32@...>

<egroups>

Sent: Sunday, September 24, 2000 7:04 PM

Subject: [] To exercise or not to exercise.

>

>

> The recent discussion about the pros and cons of exercise relating to CMT

> has given me some food for thought. I've lived 29 of my 34 years with the

> knowledge that I have CMT. I have never in all of these years come across

a

> professional who has advised me against exercise. In my opinion for a

> professional to advice against exercise borders on negligence.

>

> Exercise is important to our over all health and sense of well being. To

> not exercise puts one at greater risk of developing heart disease and

other

> potentially life-threatening problems, which pose a greater threat to an

> individual than CMT. I suspect that many of us tend to prioritize our CMT

> issues over other health issues. We get specialists who work on our feet,

> another who works on our nerves, and yet another that merely fills out the

> disability paperwork. It's not surprising that we forget to look at

> ourselves as a whole. We think about how our feet feel today, or our

knees

> or our hips, but how do we feel as a whole person, body and soul. I think

> to neglect that whole being is more harmful to the quality of life than

any

> course CMT may run.

>

> I do agree that as CMT progresses certain types of exercise can be harmful

> and may cause an exacerbation of symptoms. But in no way should that

mean

> curtailing all exercise. If a leg becomes too weak to exercise the

> traditional way then alternative regimes can be explored to focus on other

> parts of the body that will still benefit from a workout. Exercise does

not

> have to mean aerobics or jogging, for even the frailest of bedridden

> patients benefit from passive range of motion type exercise. AFO's and

> wheelchairs don't mean the end of exercise. I've watched wheelchair

> aerobics and wheelchair basketball. I've also had the pleasure of meeting

a

> gentleman who is going to participate in the NYC marathon using a hand

> peddled bike. His legs don't work, but he sure hasn't given up on the

rest

> of his body or soul.

>

> Maybe my work outs in the gym will make my CMT progress a little more

> rapidly, but I feel very strongly that my regular exercise is the best

gift

> I can give to my body and soul. The workouts will keep me living a

> healthier, happier life. For me, the benefits far outweigh any risk.

>

> _________________________________________________________________________

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>

[Guest guest]

In a message dated 9/25/2000 5:34:10 AM Pacific Daylight Time,

rmax@... writes:

<< I just do what my body allows me to do with out pushing,

anyway thats all I can do at this point for I will never again push myself

to this fast progression. >>

Becky, I do the samething. If I push myself I get hurt. I know that many

people around me talk about how wonderful they feel to exercise. I feel good

just to be able to swim a few laps. Forget the weight lifting and jogging. We

can only do the best we can and let someone else do the rest. I know my

limits sounds like you do too.

jenny

[Guest guest]

In a message dated 9/25/00 6:31:10 PM, jacee17@... writes:

<< Becky, I do the samething. If I push myself I get hurt. >>

Both of you have children at home, too. That makes a big difference. You get

more exercise than you can handle each day just doing what you need to in the

home.

CMTers without children may have the same lack of energy, strength and so

forth, due to their CMT, but having children can provide ample exercise. I

don't know any CMTer who is giving in willingly, without a fight. We can only

do what we are able to do.

I watched exercise cause my mom's CMT to progress rapidly, (no one knew it

was CMT), then when I tried a balance and exercise class, designed for frail

people, my CMT accelerated too, like hers did. I walk a lot, for me, and that

is as much as I am able to do. I haven't recovered from nine weeks of the

class, and it's been a couple of months, so I doubt I will.

I'm glad that exercise makes many of you feel good. It makes me literally

worse.

We are all different.

Kat

[Guest guest]

In a message dated 9/26/00 8:38:05 AM, a3d_donna@... writes:

<< What about swimming or Tia Chi??? >>

Sound good to me. (I'm not a medical person!)

Tai Chi involves balance, so some of us can't do it. Others can.

Swimming is often recommended for CMTers. Even teens who can't do other

sports and who may or may not wear AFOs, may be on swim teams or swim for

fun.

Do what helps you feel good.

What's bad for some other CMTer may be okay for you.

Kat