Exercise

[Guest guest]

Wow! Your story is so amazing! I want to be saying that about myself in 12

years!!! I had been doing really good, found a great in home walking program

that was awesome and I totally recommend it!

My family even felt that I was kind of in " remission " I was doing so well and

then I stopped exercising while I was pregnant with my son and for about 2 years

afterwards and now I feel like I am totally suffering for it but I am getting

back in my exercise routine but still have lazy days which I should know better

than to do. I am also starting water aerobics next week and can't wait.

My biggest motivation is to be strong for my son and to have as normal of a life

as possible.

Oh in case you haven't figured out I am my husband is . The system

seems to fill in his name if I don't put mine.

Thanks for sharing-I do also agree that this battle has a lot to do with

positive thinking and not giving up!

~

[Guest guest]

My ideal job is the one where I can get to work in 30 minutes or less.

I do not mind walking up to an hour for work. Otherwise I take the

bicycle.

Miami (FL) is a large city, but most places can be reached by car in

less than an hour. Problem with this city is that it's not all that

bike-friendly, so one must improvise when they take the bike to work.

- Arian I.

>

> Japanese researchers have found that simply walking to work can cut

> your risk of developing diabetes. In a study of almost 8,600 mgn

with

> similar sedentary jobs at the same firm it was found that those who

> took 21 minutes or more to walk to work were 25% less likely to

> develop diabetes than those who walked 10 minutes or less. The men

> had similar levels educational and socioeconomic backgrounds

> indicating it was the length of casual walking that made the

> difference; September 2007 Diabetes Care

>

>

[Guest guest]

Hi everyone,

I have been reading alot about exercise and all I know is that I joined a

women's only workout center here in the Tampa area called Shapes.

I have now been wearing one AFO on my left foot for 2 years and it has caused

atrophy and changed the way my foot lands on the floor when I am not wearing it

around the house so much so that now I am a very unsteady walker. So I have a

treadmill, bike and stability ball at home to work out with BUT I joined this

" gym " to learn more that I could do to help the strength in my leg/foot and also

to work the core and upper body.

I too feel really fatigued after excersising, BUT I sure do feel the benefits

after resting for a few minutes and then moving on. I know my limitations and

don't try nor do I expect myself to do stupid things that endanger me. I just

truely feel excersise helps and I am learning so many new ones to benefit me.

So my AFO helps, but also hinders. I walked without one for 57 years and now

here I am trying to find a way to regain or at least keep the strength I once

had. Thanks for reading this. I am going to Shapes this afternoon to try

something new for my legs and EASY does it. Have a great Friday and good

weekend.

Elaine

[Guest guest]

Working out is the best way to help CMT. I have worked out for over 20 years. I

do strength training to keep my self strong.I have CMT since birth. I don't no

why the CMT Association does not focus more on treatments like working out and

stuff like that. Yes they could have a cure but I don't focus on a cure. People

want a quick fix and don't want to work hard. That's my experience.

[Guest guest]

,

 

There is currently no cure for CMT.   " No cure " means there is nothing we can do

to slow the progression of the disease.  Stated another way, once the

nerves degenerate, the muscles will atrophy.  No amount of exercise will

prevent this atrophy or bring those muscles back. 

 

If you are still physically able to work-out and it improves your health

condition, then you are fortunate.  Many of us are not strong enough to work out

anymore and some have never been strong enough to do so.  Additionally, for many

of us, working out can actually cause more damage than good.

 

For example, my neurologist has strongly advised that I not lift any weights,

since applying additional weight to already weakened limbs can further damage my

fragile nerves.  In fact, he doesn't want me doing any physical exercise that's

not in a swimming pool.  Additionally, my pain doctor said that if I tried any

weight machines with my lower legs, my husband could just meet me in the ER,

because that's where I'd be.

 

Prior to the age of 40, I did work out regularly for many years with the help of

a personal trainer.  While working out was good for my general health, it did

not prevent my disease from progressing and my muscles from atrophying.  Now, at

the age of 45, almost any activity puts me in bed for days.  For example, I had

company yesterday and just sitting in a chair for a couple of hours visiting has

put me in bed/couch today, taking pain killers, and even crying in frustration

due to the lack of relief and the exhaustion from dealing with this chronic pain

for years.

 

One thing you need to keep in mind is that we are all different and this disease

affects everyone differently, even people within the same family.  In addition,

just because you can do something today does not mean that someone else can do

it or even that you'll be able to do it yourself in a few years.

 

I'm not hoping for a cure because I'm lazy or looking for a 'quick fix'. 

Nothing could be further from the truth and such accusations are offensive.  To

the contrary, I'm hoping for a cure so I can become active again.  Even a

partial return to a more active life would be wonderful and a relief from pain

would be incredible.

 

 

[Guest guest]

So right .

You have to take care of what you already have, not wait for something that may

or may not happen.

Marin

[Guest guest]

,

Thanks! Yes everyone needs to work out and not give up.It may never be a cure I

don't no. But working out is the best way to keep this disease under control.I

have CMT since birth so I no you can not quit on yourself.

[Guest guest]

:

No problem. I was diagnosed with spastic paraplegia in my late teens which is a

different neurological disorder but with some similarities. I am age 32 and

mostly in a wheelchair because I take care of my son. I walk with a walker two

times a week when my husband has off from work. My son is my weight I lift

every day.

[Guest guest]

I have an issue with working out. I for one have foot that faces inward at about

a 5 degree angle its not bad I know there are lots of folks worse. But I also

have fingers that I can't straighten out. I want to try to exercise but it's in

my bones that hurts. I dont want to give up but I really need someone to talk to

thanks for hearing me out.

[Guest guest]

Well said, !! My sentiments, exactly.

[Guest guest]

,

Exercise is good for people who have CMT I think.  Exercise is good because your

heart needs to stay healthy.  I'm about the same age as you were (25) when you

sprained your ankles.  I sprained my right ankle playing basketball one time

then, about a year later sprained my left ankle hiking and had to hike all the

way down the mountain on it.  I think camping is really dangerous or at least

hiking can be.  I have to be more careful with myself and I've decided to not

hike anywhere if I can avoid it.  I have lifted weights before just to

strengthen things but my ankles have never been the same since I sprained them.

Lifting things does put strain on your legs/ankles but I try to stay away from

lifts such as squat because it puts such an intense strain on a person's ankles

as I was told by my P.E. teacher in highschool.  Muscles can be strengthened but

ankles once they're sprained can't regenerate the same as they were because

tendons and

ligaments get torn or stretched.

Curtis

[Guest guest]

If your bones hurt, aquatic exercise such as walking in water is the best. The

water needs to be warm to hot. At the YMCA the water here is 82, but where I

workout one pool is 85, the other is 96. Check with your doctor, and maybe get a

referral to a PT who knows about water exercise and get you into a program.

Gretchen

[Guest guest]

I use to be a personal trainer and I hear u.Tell me what can you.Can u get in a

pool or a stationary bike.

>

> I have an issue with working out. I for one have foot that faces inward at

about a 5 degree angle its not bad I know there are lots of folks worse. But I

also have fingers that I can't straighten out. I want to try to exercise but

it's in my bones that hurts. I dont want to give up but I really need someone to

talk to thanks for hearing me out.

>

[Guest guest]

With the weights do lights weights with reps.staionary bike for at least 45 min,

3 times a week.Pool too.You need to do everything.Weights for high reps to

strengthen ur selves.

[Guest guest]

,

It's great you're so active and able to exercise so much. However, there are

many people with CMT that are unable to preform such a demanding regime. For

some Yoga, Tai Chi, PiYo, Aquatics, or time on a treadmill are just as effective

in terms of exercise.

Each one of us with CMT has a completely different body and each body has

specific needs. Each body can only tolerate so much. I realize you are in your

30's now, and you believe intense exercise is good for you. Please be careful

not to overdo it.

You may be interested in the File folder on Exercise and CMT in our Files

section (including Dr. Shy's recommendations and Dr. Chetlin's research).

Resistance exercise for CMT has been researched the most and has proven

valuable.

I hope you will remember to share just your experience, not what " we should be "

doing. We're all different despite the commonality of the CMT syndrome. I'm

pleased to know what works for you.

Gretchen

[Guest guest]

I was not trying to discorgae anyone here.everyone is different.Yoga etc is a

effective too. I need to try different things.I use to do squats but can them

now so I just do leg press ,leg extension ,and legg curls for legs.For upper

body.I do bench press. Dumbells press. triceps ,shoulders and bis. i work out 2

times and week and I make sure i get plenty of rest.Every one is different but

we must not quit on our selfs that we have CMT.Do what works best for you when

you work out.A personal trainer is excellent but you must tell him or her what u

have so they can help u.

[Guest guest]

Hi Mike,

 

If you want to start an exercise program, I'd recommend discussing it with your

doctor first.  Perhaps you can even get a referral to a physical therapist for a

few sessions, so someone with expertise can look at your body, learn about your

health issues, and then recommend exercises that are safe for you specifically.

 

If you are having arthritis-type pain in your fingers, perhaps an

anti-inflammatory medication might help, so you can gain more movement and

energy.

 

As I've already mentioned, my own ability to exercise is now very limited, but

it wasn't always that way.  I used to be able to do more.  As I've declined,

here are some important things I learned:

 

1.  Avoid isolated, repetitive exercises, which can injure inadequately

supported joints and possibly cause overwork injury to muscles/nerves.  It's

safer and more productive (emotionally and physically) to stick with

non-repetitive activities that I really enjoy doing.  (When I was younger,

dancing was most beneficial, now it's gentle movement in the pool.)

 

2.  Listen to my body.  If it hurts, stop immediately.  Never push it.  The idea

of 'no pain, no gain' is completely false when it comes to CMT patients.  If it

hurts, it's harmful.  I eventually learned that stopping even before things

start to hurt or I'm too exhausted was even better.  

 

3.  Don't risk injury.  Downtime in bed, recovering from an injury, can cause

atrophy for which I may not be able to recover.  Best not to engage in riskier

activities or to push myself too hard.

 

When I was younger, these things didn't seem as important.  However, as I've

grown weaker, these things have become critical.

 

As you begin to explore your own doctor-approved activities, take it slow and be

safe and feel free to share your experiences with us. 

 

 

[Guest guest]

I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

I still camp and canoe, play golf (with a cart)and sail and boat.

I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

[Guest guest]

Good for you. That sounds great.

Re: Exercise

I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

I still camp and canoe, play golf (with a cart)and sail and boat.

I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

[Guest guest]

----- CMT effects evryone different.

You sound like one of the lucky ones..

if there is such a thing

Geri

I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

I still camp and canoe, play golf (with a cart)and sail and boat.

I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

[Guest guest]

How blessed you are! I pray that you are in continued good health and are able

to continue being so active!

Just keep in mind that CMT affects each person differently. My CMTer is

exhausted after walking through a store and has to use a wheelchair to get

around school.

He can swim...and that's how we try to keep him fit. Low impact and fun.

Physical activity must be gauged by each individual with input from their

doctor. More harm can be done by someone trying to do too much if they are

physically not up to it.

Keep up the good work!

>

> I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

>

> I still camp and canoe, play golf (with a cart)and sail and boat.

>

> I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

>

[Guest guest]

Hi ,

 

What a great attitude you have!  You're focused on the positive and living life

following your passions.  Very admirable!

 

I have a family member with CMT who is your age and he's still very active too,

including riding his bike over 100 miles every week!  He doesn't wear AFO'\s and

has no pain.  He's still losing muscle mass, but he's in excellent shape

overall.  It's just amazing to me how different this disease affects people,

including members of the same family.

 

But...regardless of our situation...I like your approach and attitude about

life.  You're listening to your own body rather than listening to what someone

else thinks you can or can't do.  And you're focused on what you are can still

do, rather than things you can no longer do.  It certainly doesn't do us any

good to worry about things we can't change.  Better to direct that valuable

energy toward positive things.  But that's easier said than done, sometimes. 

 

So, you're an inspiration.  Thanks for sharing your story.

 

From: gomezkenneth <kgomez@...>

Subject: Re: Exercise

Date: Thursday, July 2, 2009, 2:14 PM

I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

I still camp and canoe, play golf (with a cart)and sail and boat.

I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

[Guest guest]

Hi to all and Happy 4th of July here in the USA.

Excersise.  Humm I went for physical therapy a few years ago and learned alot

from the PT people.  Since then, last July, I joined a gym, Shapes for women. 

Well I go three times a week and feel so much stronger in my legs and upper

body.  Oh I know nothing is going to cure my drop foot, but the excersises I do

there have improved my strength in the legs, arms shoulders and back.  And I

told the trainer that was teaching me things, all about CMT, brought her info to

read.  Now I do things on my own there, BUT never do to much to the legs

especially and try not to do the same things each time I go.  I wear one AFO and

use a cane sometimes too, and yes things have changed for sure over the years. 

I just want to stay as active as I can in a safe enviornment.  Have a wonderful

weekend. 

Elaine 

[Guest guest]

Hi ,

Thats great.I worked out today and did Leg press.Leg extensions and leg curls.I

did Back and Biceps. I am strong guy that can do 630 pounds on leg press and

everyone is different who have CMT.

> I am 60 years old, wear orthotics on both legs, and have been riding a road

bicycle for 20 years and have ridden around 60,000 miles. Many of those miles

are garnered in self-contained touring, which is bicycling with panniers

carrying all your gear, tent, sleeping bag, etc.

>

> I still camp and canoe, play golf (with a cart)and sail and boat.

>

> I just don't think about what I cannot do anymore,I just pursue that which I

can. Works for me.

[Guest guest]

I like to make a correction on my e-mail about exercise. It's not a cure but it

does help me out alot. I do Leg press and Leg extension and leg curls. I also do

calf raises which help out alot. For people with CMT doing core work abs,

hips,legs,calf raises and stretches will help out alot. I been working out for

over 20 years.

Thanks,