Exercise

[Guest guest]

Hi Jan,

You just dance in your chair. ~Rainy

> Rainy Sue: Thanks for the info. not sure what chair dancing is...sorry, i'm

> dumb i guess.

>

> Jan

>

[Guest guest]

Hi, I'm new to the list and I'd appreciate some advice.

My name is Ray, live in Australia and I'm 42. I believe I have Type 2 CMT

that was diagnosed when I was 27. Since then it has steadily gotton worse.

I have been wearing AFOs for 12 years and working with a stick (cane for you

in the US) for 5 years. My balance has steadily gotton worse and I now

don't like to walk alone. My hands are not very affected, nor do I suffer

any pain.

Now to the question -- it is about exercise. Because I wasn't doing any

exercise (for many many years) I became very unfit and overweight. To

address this I decided that I must do some exercise, so I enlisted the

services of a personal trainer. He is great and working out regularly has

made me feel so much better. My cardio fitness has improved and my upper

body strength is now above average. But, my legs....they just don't seem to

be improving (quads, gluts, hammies) and my balance is getting worse,

perhaps more rapidly than before. I don't want to stop the exercise, but am

I accelerating things by doing too much exercise. Should I avoid any leg

exercise?

Up until now my view has been that I'd prefer to have a strong heart and be

fit and in a chair than still walking, but dieing early due to poor fitness

and a weak heart.

Any advice?

Ray

> ----------

> From: Sue Horder-Mason[sMTP:sue@...]

> Reply

> Sent: Wednesday, 8 August 2001 8:29 AM

>

> Subject: [] Exercise

>

>

> I used to use an exercise bike, a static bike and I found if I watched the

> television - mainly my favourite soap - I didn't feel as if I was wasting

> my time by watching the television. LOL

> Love

> Sue

> The important thing is never to stop questioning.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

>

>

[Guest guest]

-

Hi Ray:

Welcome to the list!

I had the same problem!! Felt great exercising but my balance

worsened... My neurologist told me not to do any leg exercises that

cause my muscles to feel like they're " burning " or straining - eg. no

weight training. He suggested riding a stationary bike and I think

that has worked well for me. This is a tough balance because too

much exercise can overwhelm and burn out already weakened muscles and

nerves but not enough can lead to weight problems that also make CMT

much harder to live with.

Again, avoid exercises that put strain on muscles. I hate to

be the bearer of bad news, but from what I've been told, you can't

really build up muscles or nerves destroyed by CMT - all you can do

is keep the ones around them as healthy as possible to avoid further

atrophy.

Good luck. Marti

-- In @y..., Ray <@a...> wrote:

> Hi, I'm new to the list and I'd appreciate some advice.

>

> My name is Ray, live in Australia and I'm 42. I believe I have

Type 2 CMT

> that was diagnosed when I was 27. Since then it has steadily

gotton worse.

> I have been wearing AFOs for 12 years and working with a stick

(cane for you

> in the US) for 5 years. My balance has steadily gotton worse and I

now

> don't like to walk alone. My hands are not very affected, nor do I

suffer

> any pain.

>

> Now to the question -- it is about exercise. Because I wasn't

doing any

> exercise (for many many years) I became very unfit and overweight.

To

> address this I decided that I must do some exercise, so I enlisted

the

> services of a personal trainer. He is great and working out

regularly has

> made me feel so much better. My cardio fitness has improved and my

upper

> body strength is now above average. But, my legs....they just

don't seem to

> be improving (quads, gluts, hammies) and my balance is getting

worse,

> perhaps more rapidly than before. I don't want to stop the

exercise, but am

> I accelerating things by doing too much exercise. Should I avoid

any leg

> exercise?

>

> Up until now my view has been that I'd prefer to have a strong

heart and be

> fit and in a chair than still walking, but dieing early due to poor

fitness

> and a weak heart.

>

> Any advice?

>

> Ray

>

>

> > ----------

> > From: Sue Horder-Mason[sMTP:sue@h...]

> > Reply @y...

> > Sent: Wednesday, 8 August 2001 8:29 AM

> > @y...

> > Subject: [] Exercise

> >

> >

> > I used to use an exercise bike, a static bike and I found if I

watched the

> > television - mainly my favourite soap - I didn't feel as if I was

wasting

> > my time by watching the television. LOL

> > Love

> > Sue

> > The important thing is never to stop questioning.

> > Website www.horder-mason.freeserve.co.uk

> > Freelance Writer and CMTer

> >

> >

> >

[Guest guest]

Marti,

do you really mean no burn or strain in ANY muscle, or just those that might

be effected by the CMT?

Ray

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

From: mmc3737@...

Sent: 8/08/2001 10:18 AM

Subject: [] Re: Exercise

-

Hi Ray:

Welcome to the list!

I had the same problem!! Felt great exercising but my balance

worsened... My neurologist told me not to do any leg exercises that

cause my muscles to feel like they're " burning " or straining - eg. no

weight training. He suggested riding a stationary bike and I think

that has worked well for me. This is a tough balance because too

much exercise can overwhelm and burn out already weakened muscles and

nerves but not enough can lead to weight problems that also make CMT

much harder to live with.

Again, avoid exercises that put strain on muscles. I hate to

be the bearer of bad news, but from what I've been told, you can't

really build up muscles or nerves destroyed by CMT - all you can do

is keep the ones around them as healthy as possible to avoid further

atrophy.

Good luck. Marti

-- In @y..., Ray <@a...> wrote:

> Hi, I'm new to the list and I'd appreciate some advice.

>

> My name is Ray, live in Australia and I'm 42. I believe I have

Type 2 CMT

> that was diagnosed when I was 27. Since then it has steadily

gotton worse.

> I have been wearing AFOs for 12 years and working with a stick

(cane for you

> in the US) for 5 years. My balance has steadily gotton worse and I

now

> don't like to walk alone. My hands are not very affected, nor do I

suffer

> any pain.

>

> Now to the question -- it is about exercise. Because I wasn't

doing any

> exercise (for many many years) I became very unfit and overweight.

To

> address this I decided that I must do some exercise, so I enlisted

the

> services of a personal trainer. He is great and working out

regularly has

> made me feel so much better. My cardio fitness has improved and my

upper

> body strength is now above average. But, my legs....they just

don't seem to

> be improving (quads, gluts, hammies) and my balance is getting

worse,

> perhaps more rapidly than before. I don't want to stop the

exercise, but am

> I accelerating things by doing too much exercise. Should I avoid

any leg

> exercise?

>

> Up until now my view has been that I'd prefer to have a strong

heart and be

> fit and in a chair than still walking, but dieing early due to poor

fitness

> and a weak heart.

>

> Any advice?

>

> Ray

>

>

> > ----------

> > From: Sue Horder-Mason[sMTP:sue@h...]

> > Reply @y...

> > Sent: Wednesday, 8 August 2001 8:29 AM

> > @y...

> > Subject: [] Exercise

> >

> >

> > I used to use an exercise bike, a static bike and I found if I

watched the

> > television - mainly my favourite soap - I didn't feel as if I was

wasting

> > my time by watching the television. LOL

> > Love

> > Sue

> > The important thing is never to stop questioning.

> > Website www.horder-mason.freeserve.co.uk

> > Freelance Writer and CMTer

> >

> >

> >

[Guest guest]

Hi Ray and welcome you'll soon discover your amongst friends.

I read with interest your posting on exercise but I was a little concerned when

you said about your personal trainer. Do they know anything about CMT? If not I

would suggest that you talk to your doctor and tell him the program your doing

and just check that it is safe for you to continue - because the wrong sort of

exercise can do damage and I really wouldn't like you to injure or damage

yourself by doing these exercises if they are wrong.

If they're not - keep up the good work and enjoy.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

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

From: Ray

' '

Sent: Tuesday, August 07, 2001 11:54 PM

Subject: RE: [] Exercise

Hi, I'm new to the list and I'd appreciate some advice.

My name is Ray, live in Australia and I'm 42. I believe I have Type 2 CMT

that was diagnosed when I was 27. Since then it has steadily gotton worse.

I have been wearing AFOs for 12 years and working with a stick (cane for you

in the US) for 5 years. My balance has steadily gotton worse and I now

don't like to walk alone. My hands are not very affected, nor do I suffer

any pain.

Now to the question -- it is about exercise. Because I wasn't doing any

exercise (for many many years) I became very unfit and overweight. To

address this I decided that I must do some exercise, so I enlisted the

services of a personal trainer. He is great and working out regularly has

made me feel so much better. My cardio fitness has improved and my upper

body strength is now above average. But, my legs....they just don't seem to

be improving (quads, gluts, hammies) and my balance is getting worse,

perhaps more rapidly than before. I don't want to stop the exercise, but am

I accelerating things by doing too much exercise. Should I avoid any leg

exercise?

Up until now my view has been that I'd prefer to have a strong heart and be

fit and in a chair than still walking, but dieing early due to poor fitness

and a weak heart.

Any advice?

Ray

> ----------

> From: Sue Horder-Mason[sMTP:sue@...]

> Reply

> Sent: Wednesday, 8 August 2001 8:29 AM

>

> Subject: [] Exercise

>

>

> I used to use an exercise bike, a static bike and I found if I watched the

> television - mainly my favourite soap - I didn't feel as if I was wasting

> my time by watching the television. LOL

> Love

> Sue

> The important thing is never to stop questioning.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

>

>

[Guest guest]

>

> Now to the question -- it is about exercise. Because I wasn't doing any

> exercise (for many many years) I became very unfit and overweight. To

> address this I decided that I must do some exercise, so I enlisted the

> services of a personal trainer. He is great and working out regularly has

> made me feel so much better. My cardio fitness has improved and my upper

> body strength is now above average. But, my legs....they just don't seem

to

> be improving (quads, gluts, hammies) and my balance is getting worse,

> perhaps more rapidly than before. I don't want to stop the exercise, but

am

> I accelerating things by doing too much exercise. Should I avoid any leg

> exercise?

>

> Up until now my view has been that I'd prefer to have a strong heart and

be

> fit and in a chair than still walking, but dieing early due to poor

fitness

> and a weak heart.

>

> Any advice?

OVERWEIGHT IS FREQUENT IN CMT, WHEREAS IT IS HIGHLY RECOMMENDED TO REMAIN

SLIM. MY ADVICE IN SHORT: LOSE WEIGHT, STOP LEG EXERCISES, GO SWIMMING, WALK

REGULARLY AND DO NOT EXCEED IN ANYTHING.

PAOLO

[Guest guest]

G,day Ray!

Welcome aboard. I am glad your cardio fitness is improving and sorry your

leg muscles are not. CMT has many different faces, what works for me may not

work for you and vice versa. I am always curious to see what other people

with CMT due for excercise and such. Talk to your doctor. I have learned

that excercise can exacerbate CMT for many people but not for all. I have no

problem putting muscle mass on anywhere on my body except for my calves. I

also have no problem putting fat around my waist. A sluggish metabolism

seems to go hand and hand with CMT. I excercise like a madman to stay 20 lbs

above my ideal weight. As men in our 40's a healthy heart is far more

important than big muscles. I try and not consume carbohydrates after 5pm at

least 4 nights a week, this helps keep my weight under control.

Unfortunately I love carbs, I would rather eat pasta than steak. Keep on

excercising just go at your own pace.

Regards,

BC

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

From: Ray <@...>

< >

Sent: Tuesday, August 07, 2001 3:54 PM

Subject: RE: [] Exercise

> Hi, I'm new to the list and I'd appreciate some advice.

>

> My name is Ray, live in Australia and I'm 42. I believe I have Type 2 CMT

> that was diagnosed when I was 27. Since then it has steadily gotton

worse.

> I have been wearing AFOs for 12 years and working with a stick (cane for

you

> in the US) for 5 years. My balance has steadily gotton worse and I now

> don't like to walk alone. My hands are not very affected, nor do I suffer

> any pain.

>

> Now to the question -- it is about exercise. Because I wasn't doing any

> exercise (for many many years) I became very unfit and overweight. To

> address this I decided that I must do some exercise, so I enlisted the

> services of a personal trainer. He is great and working out regularly has

> made me feel so much better. My cardio fitness has improved and my upper

> body strength is now above average. But, my legs....they just don't seem

to

> be improving (quads, gluts, hammies) and my balance is getting worse,

> perhaps more rapidly than before. I don't want to stop the exercise, but

am

> I accelerating things by doing too much exercise. Should I avoid any leg

> exercise?

>

> Up until now my view has been that I'd prefer to have a strong heart and

be

> fit and in a chair than still walking, but dieing early due to poor

fitness

> and a weak heart.

>

> Any advice?

>

> Ray

>

>

> > ----------

> > From: Sue Horder-Mason[sMTP:sue@...]

> > Reply

> > Sent: Wednesday, 8 August 2001 8:29 AM

> >

> > Subject: [] Exercise

> >

> >

> > I used to use an exercise bike, a static bike and I found if I watched

the

> > television - mainly my favourite soap - I didn't feel as if I was

wasting

> > my time by watching the television. LOL

> > Love

> > Sue

> > The important thing is never to stop questioning.

> > Website www.horder-mason.freeserve.co.uk

> > Freelance Writer and CMTer

> >

> >

> >

[Guest guest]

Yo go girl! I like your routine, especially the part of going back to bed

after your morning workout and sleeping for another five hours. I could get

used to that.

Regards,

BC

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

From: <martalynn@...>

< >

Sent: Wednesday, August 08, 2001 7:50 PM

Subject: [] Exercise

> ~Hello Everyone~

>

> I haven't checked this site for a while, but now I'm glad I did

> again! I thought I would share some things with you.

>

> It's funny that all of you were mentioning exercising. I'm proud

> to say I've been very active lately. For the past three weeks I've

> been doing lots of working out. I'm one of the fortunate few; right

> next to my house there is a 90-acre park with a bike path completely

> around it (the bike path is a circular 1.5 miles long and flat might

> I add). Also, one of the things my parents thought was beneficial to

> get was a gym, so I have easy access to all sorts of workouts. For

> this I am eternally grateful, never would I have started working out

> if this were not the case.

>

> I take a bike ride every morning at about 5-6:00 am and go around

> the park twice, and no need to be all shocked, I go right back to

> sleep when I get home and don't wake up until at least another five

> hours. I go for another bike ride later in the day, but I only go

> around the park once this time. Come home then, run as long as I can

> on the treadmill (currently a whopping five minutes!). I can never

> run for very long because I concentrate as hard as I can to run

> correctly. Hence, just five minutes tires me plenty. After that I

> just do some weight training. Take out my anger on a punching bag.

> That's about it. I'm pretty lucky too cause I'm still a child and

> have no worries about work or having to do much else. I'm sure for

> adults all this time would be much more difficult to have.

>

> The thing is though, after being weak for as long as I can

> remember, I'm getting into shape. My pain is decreasing, my balance

> improving. Also, taking a little weight off joints is always good.

>

> At this rate, perhaps someday I'll be capable of operating somewhat

> normally ) Hey...I can still dream...

>

> ~Marta~

>

>

>

>

>

[Guest guest]

Thanks for the advice Paolo, I've just had a pool put in our back yard so I

guess there is no excuse for me not to swim. Walking for long distances is

not really an option since I worry about falling (and not being able to get

up!) and it gives me groin pain. I do really enjoy my trips to the gym, so

I don't want to give them up. This usually involves a bit of exercise bike

(little resistance) then some upper body weight training or boxing or leg

work (proximal muscles only). Sounds like given your comments I should give

up on the latter.

Thanks again

Ray

PS I couldn't find " STRENGTHENING OF THE PROXIMAL MUSCLE IN CMT DISEASE " ,

did you give the correct reference?

> ----------

> From: Paolo Vinci

> Reply

> Sent: 09 August 2001 02:40

>

> Subject: Re: [] Exercise

>

> >

> > Now to the question -- it is about exercise. Because I wasn't doing

> any

> > exercise (for many many years) I became very unfit and overweight. To

> > address this I decided that I must do some exercise, so I enlisted the

> > services of a personal trainer. He is great and working out regularly

> has

> > made me feel so much better. My cardio fitness has improved and my

> upper

> > body strength is now above average. But, my legs....they just don't

> seem

> to

> > be improving (quads, gluts, hammies) and my balance is getting worse,

> > perhaps more rapidly than before. I don't want to stop the exercise,

> but

> am

> > I accelerating things by doing too much exercise. Should I avoid any

> leg

> > exercise?

> >

> > Up until now my view has been that I'd prefer to have a strong heart and

> be

> > fit and in a chair than still walking, but dieing early due to poor

> fitness

> > and a weak heart.

> >

> > Any advice?

> OVERWEIGHT IS FREQUENT IN CMT, WHEREAS IT IS HIGHLY RECOMMENDED TO REMAIN

> SLIM. MY ADVICE IN SHORT: LOSE WEIGHT, STOP LEG EXERCISES, GO SWIMMING,

> WALK

> REGULARLY AND DO NOT EXCEED IN ANYTHING.

> PAOLO

>

>

>

>

>

>

>

[Guest guest]

In a message dated 8/7/01 8:08:08 PM Eastern Daylight Time,

lisarich.com@... writes:

> . Somehow I just " knew " the dreaded

> S-word, swimming would be mentioned!

Hi ,

I have to agree with everyone that swimming is an excellent all around

exercise and since you have the Lake there (and I hear you cannot swim), sit

and immerse your legs in the water, then work them laterally back and forth

(like a scissors action) . The resistance of the water will start you on the

road to building up the legs. I also understand you have poor balance for

walking so stand in the water so it is up to a point say between you

midsection and chest then start to walk and use your arms and hands against

the water to balance your self. Great for the legs. If you have a YMCA/YWCA

in your area both you and your husband could work out together.

E

[Guest guest]

That's hilarious . You ask your children to open the " Child

Proof " lids for you!!! Har, har, har. :-)

-- Ron

> ...

> re child proof lids and any others i can't open, i ask my kids,

> it makes them feel so good to do something i can't!

>

> have a good weekend everyone.

> susan in ohio

[Guest guest]

Hi,

This is a perfect example of conflicting medical advice. My Doctor

told me she absolutely didn't want me do any kind of exercising while

standing. I asked specifically about water aerobics (okay, yes seeing

pretty women in swim suits was part of the draw!) she told me no, I

cannot do any sort of exercising even standing in water. She told me I

could swim until my arms fell off if I wanted to, I elected to stop

short of that. I do some isometric exercising while in a chair, but

can't do any free weights even dumbbells because of my hands. So my

question is who's right? Or are they each right only for us as

individuals..

Dave

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> blackiebowman@a... wrote:

> >

> > According to my doctors physical exercise is quite helpful.

> > I exercise in a heated pool. Because your body is boyant

> > in water, your muscles are able to withstand exercise. You can get

your

> > doctor to write a prescription for water therapy and Medicare will

pay 80% of

> > the cost. If you have secondary insurance they'll pick up the

remaining 20%.

> > To asure that your insurance will pay you must get pool therapy

through some

> > Sports Medicine facilities, your local hospital providing they

haver a pool.

> > If no one can help pay the fees then, try to get a mem,bership at

your local

> > YMCA. They are very accomadating to people with disabiliuties.

[Guest guest]

Dave,

I have said this b4 but it is worth repeating. When I was diagnosed as a

teenager, my doctor knew very little about CMT although he was a

neurosurgeon. He told my folks and me that I should live a sedentary life

and that I would never be like other kids. He advised my parents to pull me

out of judo, baseball and all of my other activities. Well here I am almost

30 years later, I still lift weights 4-5 days per week, I mountain bike on

weekends and hold black belts in 3 different martial arts.

I totally ignored my doctor, my parents let me live my own life and I will

be forever greatful to them for that. For me, excercise has kept me strong

and I believe it has staved off my CMT as well as things like obesity and

diabetes that plague other members of my family. This has worked for me,

obviously it won't work for every body with CMT.

Doctors know so very little about CMT, hence the conflicting advice. You

have to try things, and you have to allow time for results, whatever works

for you.

Regards,

BC

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

From: numbthumb2 <numbthumb2@...>

< >

Sent: Thursday, January 17, 2002 2:00 PM

Subject: [] Re: exercise

>

> Hi,

> This is a perfect example of conflicting medical advice. My Doctor

> told me she absolutely didn't want me do any kind of exercising while

> standing. I asked specifically about water aerobics (okay, yes seeing

> pretty women in swim suits was part of the draw!) she told me no, I

> cannot do any sort of exercising even standing in water. She told me I

> could swim until my arms fell off if I wanted to, I elected to stop

> short of that. I do some isometric exercising while in a chair, but

> can't do any free weights even dumbbells because of my hands. So my

> question is who's right? Or are they each right only for us as

> individuals..

> Dave

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> > blackiebowman@a... wrote:

> > >

> > > According to my doctors physical exercise is quite helpful.

> > > I exercise in a heated pool. Because your body is boyant

> > > in water, your muscles are able to withstand exercise. You can get

> your

> > > doctor to write a prescription for water therapy and Medicare will

> pay 80% of

> > > the cost. If you have secondary insurance they'll pick up the

> remaining 20%.

> > > To asure that your insurance will pay you must get pool therapy

> through some

> > > Sports Medicine facilities, your local hospital providing they

> haver a pool.

> > > If no one can help pay the fees then, try to get a mem,bership at

> your local

> > > YMCA. They are very accomadating to people with disabiliuties.

>

>

>

>

[Guest guest]

BC,

What great words of wisdom! I agree totally.

Karon

[Guest guest]

Hey, ! Glad to see you post. I hope you will be successful in

eliminating the insulin shots from your routine. Sounds like you are

well on your way.

I like the idea of Tai Chi for a low-impact exercise. There was a math

teacher at the university I attended who would often do Tai Chi by

the lake in the very early morning. What a serene image it was! I

haven't tried it yet, but it does remain in the back of my mind as a

possibility for the future.

If I were you, I wouldn't give up on it yet. If you are really out of

shape, take it very slow and easy at first and gradually work your way

up to a more challenging level. Make sure to warm up and cool down.

Gentle stretching before and after can really help make the workout a

success.

A good article on Tai Chi from the Arthritis Foundation in Arthritis

Today:

http://www.arthritis.org/resources/arthritistoday/2000_archives/2000_07_08_taich\

i.asp

My exercise routine includes the use of a cross-country ski machine,

free weights, and brisk walking (maybe you physician can recommend more

comfortable footwear for you?). I also enjoy gardening for exercise. I

belong to a no-frills gym, but I haven't been exercising there lately

since my exercising buddy, my daughter, left for college in August. I

liked going there since they had a variety of machines I could choose to

use. It kept things interesting.

As others suggested, swimming is a wonderful choice. It's hard to think

of anything gentler on your joints that takes them through the full range of

motion.

[ ] Exercise

> Hi!

>

> Recently my rheumy said I should take up some sort of exercise to

> strengthen my muscles to help support the joints, especially if I am

having

> a flare. He said it should be something low impact and all I could

think

> of was Tai-Chi. I asked him if that was what he meant and he

basically

> said yes ,as one example, as long as I don't over stress the joints.

>

> I'm curious what others do for exercise and has anyone specifically

tried

> Tai-Chi? I looked into a class at the local community college but

they

> wanted to charge 75 bucks to basically try and mimic the instructors

> movements. My thinking was I could do that for a lot less money by

buying

> a video, which I did. It's titled something like " Tai-Chi For Older

People

> Over Fifty " . I'll say, most of those in the tape look like they're in

> their 70's/80's! But I figured if they can do it that I, at only 49,

can

> too! lol First two days went well but after the third day, my

right

> knee got tight and slightly swollen, and it was hard and a bit painful

> getting around the next couple of days. Now I am apprehensive to go

back

> to it. That's basically why I am asking about all this as I REALLY

need to

> strengthen these muscles. Walking is painful and tiring. As someone

> mentioned on this list awhile back, the balls of your feet feel like

you're

> " walking barefoot on Lego's " - Good analogy. Of course there is pain

> and/or discomfort in the knees, ankles and a couple toes, too.

> So what are the rest of you doing?

>

> Oh, if anyone wants to do like I did and buy a video to follow. I

would

> suggest you try and get it on DVD if that's an option for you. I

didn't

> think of this when I got mine and with the rewinding, fast-forwarding,

> replaying, etc., this is probably wearing out the tape big time.

>

> Later . . .

>

[Guest guest]

on 10/22/02 3:23 PM, /Celine Kossart at kozys@... wrote:

> I'm curious what others do for exercise and has anyone specifically tried

> Tai-Chi?

, I ride a stationary bike. It's pretty easy on the knees but gives me a

pretty good workout.

Tai-Chi looks interesting on that Celebrex commercial. Maybe I'll buy a

tape. I also would like to try some simple weight-lifting exercises that I

could do at home to improve my bone density.

Sue in NC

[Guest guest]

Thanks Marti, for your advice. I really appreciate it and am

motivated to hear that you have gotten stronger since you began

to exercise. I have always been so athletic and appear to be

in good shape. I am just so puzzled as to why my muscles burn

so quickly. Guess that is just the CMT making its ugly appearance.

Best wishes,

Karon

[Guest guest]

Go, Sal! I believe weight training is a great idea.

Do you have a rheumatologist? Maybe you should consider a stronger DMARD

than Plaquenil if you are having so much trouble.

[ ] Exercise

> IN december last year i bought a crossbow for myself. It was

> only 35.00/mo and i thought i could handle it for my health. It was

> winter and as i started, so did the pain. I couldnt grasp the

> handles and my shoulders hurt too. The machine sat for a few months.

> Then i tried it again. More pain.

> Then the weight started creeping up and my clothes fitting

> tighter....then i found the " family " here on RA SUPPORT.........and

> got motivated and determined to get in better shape. For you see, we

> should never compare ourselves to others......NEVER. We should look

> at ourselves and do what we are able to.

> I saw another commercial about the crossbow. And I began

> with 5 pounds, then 10 , now at 15....

>

> It doesnt matter how much weight i am able to pick up....the

> important thing is i started an exercise program TODAY.......one step

> at a time........to keep my joints flexible and lubricated.......to

> keep them in motion..........

>

> Any aerobic program would do the same. Though this machine

> helps put on muscle.........

>

> Its a beginning........doing it for MY own health....one day

> at a time.......you all have a nice day....

>

> SAL in wv

[Guest guest]

Holly,

As for exercise, I would suggest perhaps you start by contacting your

physical therapist and perhaps something can be designed for you and

your needs. The best thing happened to me after back surgery - I

discovered the benefits of aquatics - as a result of physical therapy -

and am still doing it 3X a week. I love the pool and it is so easy to

move in water. Small classes are great too. I also recently started

Pilates, and as time permits, walk the dogs and bike. Have also done

Yoga, which you might look into also.

As for loosing weight, the best I have ever done is to cut calories, cut

sugar, cut softdrinks, cut, cut, cut the calories first. Then the

exercise to tone up.

I don't know what " type " of CMT I have and I also do not know what you

mean by your severity, but starting with a medical evaluation and

physical therapy might be a good way to go. Good luck.

~ Gretchen

[Guest guest]

Thank you Gretchen! I've got some Winsor/Pilates DVD's that I ordered a while

back and I worked on them for a while and they really didn't make me be in lots

of pain, I just didn't notice any differences after 6 months of doing them but I

still do them every now and then just to get the benefits from them such as the

flexibility. Does MDA cover my doc bills if I go see my specialists??? I would

love doing aquatics.. except for wearing a bathing suit lol! I'm not big on

drinking sodas, I do drink a lot of sprite though. It would be no problem to

eliminate them. But calories.. how do you keep track of yours? I've never

actually taken the time to look at a nutrition guide. I am 18 yrs old.. and

I've been eating whatever my parents bring into the house. But my husband and I

are going to be getting stationed together in Washington and I figure then is

when I can have more control over what I eat and how I live. I'm actually very

excited about it bc I can live off of fruits and

veggies but my mother and father and siblings are addicted to junk food.

Anyways, thank you for the advice!!

Holly DeShaney

[Guest guest]

Hello ,

You are absolutely right. I am like you, I cannot exercise my legs in a gym

but I lay on the floor and try to raise one at a time. One of my physical

therapists gave me a latex band (think of it as big rubber band) that I use

to exercise my legs.

I can not flex my toes, I flex them with my hands for about five minutes. My

upper body is good, so I do push ups, half set ups. When I wake up I just

try to stretch for 1 minute. Do not over do it. Always stretch in order not

injure yourself.

Consult your doctor or physical therapist about a long term set of exercises

that you can do. If you feel that exercise is going to take up all of your

energy, cut the amount of time down and do it at night before you go to

bed. Then gradually increase it to the level you need. Exercise and diets

are life styles (mostly habits) that you can not acquire over night you just

need to allocate the time and pursue it but once you get in the habit it

becomes second nature to you.

Good luck:-)

Nidal

http://www.cmtworld.org

http://www.neurologychannel.com/charcot/

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[Guest guest]

my hubby is always pushing me to exercise and get out and walk with him

2miles a day. It gets so aggravating for me. I can't make it to the end of

the

block and back without severe foot drop. The exhaustion i feel is not good.

So I am looking into pilates. I do water aerobics in the summer and that is

fun. I am now lifting light weights and i feel better. my legs are numb and

have no feeling in them but lifting a little bit of weight is okasy for them it

keepd the circulation going. i started slow and i have worked my way up some.

good luck trying weights. Cathleen in Atkansas

[Guest guest]

I felt like my body had gotten totally out of shape, so I got my

doctor's permission to join a fitness club and start exercising. I

decided to take an aerobics class for seniors. I bent, twisted,

gyrated, jumped up and down, and perspired for an hour. But, by the

time I got my leotards on, the class was over.

[Guest guest]

Good one, Kathi, sounds like me when I tried going to pool classes.

Hugs

June

[ ] RE: Exercise

I felt like my body had gotten totally out of shape, so I got my

doctor's permission to join a fitness club and start exercising. I

decided to take an aerobics class for seniors. I bent, twisted,

gyrated, jumped up and down, and perspired for an hour. But, by the

time I got my leotards on, the class was over.

[Guest guest]

LOL!

> I felt like my body had gotten totally out of shape, so I got my

> doctor's permission to join a fitness club and start exercising. I

> decided to take an aerobics class for seniors. I bent, twisted,

> gyrated, jumped up and down, and perspired for an hour. But, by the

> time I got my leotards on, the class was over.

>

>