Exercise

[Guest guest]

I like how people read information wrong.well a lady told me that I posted on

here that working out is a cure for CMT and I never said that.I said it helps

out period.I looked at all my post I e-mailed on this web site.I have CMT since

birth and I know working out is not a cure for it.I been working out for over 20

years now and I know it helps ME .Im talking about ME and I know im not a Doctor

..Most Doctors dont no anything about CMT.

It offends me and makes me mad when im accused of saying stuff I did not say.I

wanted to make my self clear here ok.

Every one is different and they no what works best for themselves.I know that

getting in the pool is very good and if you can get on a stationary bike thats

good. Massage therapy is good and accupunture is good.I have done all these

things and I can see a improvement in my self. So I wanted to make my self

clear. I said it helps ME out. That is my experience.

Thanks,

[Guest guest]

,

I am the mother of an 8 year old boy who may have CMT. And I would like to thank

you for your posts. They have given me hope, not only that he will be able to

physically exercise and benefit, but that he will maintain a sense of self worth

and forward thinking. I have not gotten the idea that you were attempting to

anything other than share your experience. And please don't stop.

In His Most Merciful Name,

Ziegler

[Guest guest]

,

If you need something to tell the complaining ladies tell them that

my older CMT son (he is 20) works out at the gym. He is much stronger than when

he first started. He can squeeze a grip handle bar thing now. He can pull his

body up off the ground with his arms and be upside down for several minutes. He

drives me nuts doing it.

[Guest guest]

,

Exercise is a wonderful tool for me as well. Thanks for sharing your

experiences with us.

J. Warren

[Guest guest]

Your so welcome.People with CMT must never give up the fight.I worked out for

over 20 years and it really helps me out.With your son I would use the machines

because they are safer.I use weights because im more experienced.There are some

ladys that are upset with me because I posted about working out.

[Guest guest]

,

 

Since I'm one of the 'ladies' you are maligning to the group, I'd like to

clarify that I'm certainly not upset about you posting your personal experiences

about working out.  This is a wonderful forum for posting our personal

experiences and sharing what helps us individually.  The concern I (and

others) have is that you are advising others about what they should do and for

those who don't follow your recommendations about fighting CMT with exercise,

you said they were 'lazy'.

 

I'm happy to see you have clarified that you don't think exercise is a treatment

for CMT, but simply that it has helped you individually.  There is much research

going on now to evaluate exactly what the benefits of physical therapy might be

in our disease, but there is no clear direction yet and even if there were

research to support exercising, it would still be different for each one of us,

based on our own individual degree of joint/muscle deterioration and weakness. 

We each need to do what we feel is best with our own bodies with the help of

trusted medical professionals and not judge what others do.

 

As for recommending that an 8 year old child work out with weights, I would

highly caution that mom to consult with her son's doctor before beginning any

activity like this.  Many pediatricians don't recommend that healthy children

start with weights this young, even more so with a child who may have CMT.

 

For all of us, it's advisable to consult with a physician before beginning any

program.  It's also advisable to work with a knowledgable physical therapist to

learn appropriate exercises and how they should safely be done based on our

unique individual conditions/issues.  Gretchen has also posted much information

in the past about many things to watch for in exercising, in order to make sure

we're not overdoing it and causing further damage.  I would recommend this

reading for anyone who's planning to begin a new exercise regime.

 

In summary, , it's great that you share what works for you.  You are 39, on

disability, and you use a wheelchair, but even still, you are able to workout

and feel that exercising is helping you.  That's wonderful for you and sharing

your information can be valuable to others.  But you still need to guard against

giving medical advise to others.  Even a medical doctor would refrain from

giving medical advice over the Internet, especially to a person whom he/she

didn't know and had never seen.  It's just not wise and could cause others harm.

 

 

[Guest guest]

Im not worried what people think. I live my life on working hard so CMT does not

defeat me. Another lady gave me encouragement to yesterday. Thanking me for

posting it.

[Guest guest]

Brilliantly written !

This forum is perfect for sharing what works for folks as individuals! I would

never ever try anything anyone suggests on any website before researching it and

discussing it fully with my sons doctor(s).

has been injured twice from physical therapists who pushed him too hard

and refused to understand and learn about the limitations of his individual

affliction with CMT. There are adults who believe that since they were able to

do things as a kid, all CMTers should be able to do them as kids....and it

simply isn't so.

While I am thrilled that many CMTers are blessed by being able to benefit from

working out, in my opinion (and the opinion of many others on this site), I

agree with you: it is totally inappropriate to be stating that people should be

lifting weights and riding bikes and using machines and be so explicit about

work out routines. My child benefits from a very low impact swim session a few

times a week. We designed it after consulting with physical therapists and the

neurologist.

Parents, it's been my experience that you follow the advice of your physicians

first. Don't start any new vitamin, mineral, work out routine, anything without

speaking to the docs. From our experience try to be very careful when selecting

physical and occupational therapists. Very few actually know how to help kids

with CMT. Let your kids tell you when they have had enough and learn to listen

to them, as they learn to listen to their bodies. Each person is affected so

differently...everything needs to by customized to the idividual.

Friends on this site...we have many new members and I think it's really

important that we are not providing information as if it were written in stone.

We should always preface things with " It's been my experience...or I've had

success with...or This didn't work for me... " but not to be blanketly saying

" you should " . People can get hurt that way and be terribly misinformed.

Just my 2 cents worth.

>

> ,

>  

> Since I'm one of the 'ladies' you are maligning to the group, I'd like to

clarify that I'm certainly not upset about you posting your personal experiences

about working out.  This is a wonderful forum for posting our personal

experiences and sharing what helps us individually.  The concern I (and

others) have is that you are advising others about what they should do and for

those who don't follow your recommendations about fighting CMT with exercise,

you said they were 'lazy'.

>  

> I'm happy to see you have clarified that you don't think exercise is a

treatment for CMT, but simply that it has helped you individually.  There is

much research going on now to evaluate exactly what the benefits of physical

therapy might be in our disease, but there is no clear direction yet and even if

there were research to support exercising, it would still be different for each

one of us, based on our own individual degree of joint/muscle deterioration and

weakness.  We each need to do what we feel is best with our own bodies with the

help of trusted medical professionals and not judge what others do.

>  

> As for recommending that an 8 year old child work out with weights, I would

highly caution that mom to consult with her son's doctor before beginning any

activity like this.  Many pediatricians don't recommend that healthy children

start with weights this young, even more so with a child who may have CMT.

>  

> For all of us, it's advisable to consult with a physician before beginning any

program.  It's also advisable to work with a knowledgable physical therapist to

learn appropriate exercises and how they should safely be done based on our

unique individual conditions/issues.  Gretchen has also posted much information

in the past about many things to watch for in exercising, in order to make sure

we're not overdoing it and causing further damage.  I would recommend this

reading for anyone who's planning to begin a new exercise regime.

>  

> In summary, , it's great that you share what works for you.  You are 39,

on disability, and you use a wheelchair, but even still, you are able to workout

and feel that exercising is helping you.  That's wonderful for you and sharing

your information can be valuable to others.  But you still need to guard against

giving medical advise to others.  Even a medical doctor would refrain from

giving medical advice over the Internet, especially to a person whom he/she

didn't know and had never seen.  It's just not wise and could cause others harm.

>  

>  

>

>

>

>

>

[Guest guest]

and ,

Amen!

Gretchen

[Guest guest]

I so agree with you on this

Geri

Brilliantly written !

This forum is perfect for sharing what works for folks as individuals! I would

never ever try anything anyone suggests on any website before researching it and

discussing it fully with my sons doctor(s).

has been injured twice from physical therapists who pushed him too hard

and refused to understand and learn about the limitations of his individual

affliction with CMT. There are adults who believe that since they were able to

do things as a kid, all CMTers should be able to do them as kids....and it

simply isn't so.

While I am thrilled that many CMTers are blessed by being able to benefit from

working out, in my opinion (and the opinion of many others on this site), I

agree with you: it is totally inappropriate to be stating that people should be

lifting weights and riding bikes and using machines and be so explicit about

work out routines. My child benefits from a very low impact swim session a few

times a week. We designed it after consulting with physical therapists and the

neurologist.

Parents, it's been my experience that you follow the advice of your physicians

first. Don't start any new vitamin, mineral, work out routine, anything without

speaking to the docs. From our experience try to be very careful when selecting

physical and occupational therapists. Very few actually know how to help kids

with CMT. Let your kids tell you when they have had enough and learn to listen

to them, as they learn to listen to their bodies. Each person is affected so

differently...everything needs to by customized to the idividual.

Friends on this site...we have many new members and I think it's really

important that we are not providing information as if it were written in stone.

We should always preface things with " It's been my experience...or I've had

success with...or This didn't work for me... " but not to be blanketly saying

" you should " . People can get hurt that way and be terribly misinformed.

Just my 2 cents worth.

>

> ,

>

> Since I'm one of the 'ladies' you are maligning to the group, I'd like to

clarify that I'm certainly not upset about you posting your personal experiences

about working out. This is a wonderful forum for posting our personal

experiences and sharing what helps us individually. The concern I (and others)

have is that you are advising others about what they should do and for those who

don't follow your recommendations about fighting CMT with exercise, you said

they were 'lazy'.

>

> I'm happy to see you have clarified that you don't think exercise is a

treatment for CMT, but simply that it has helped you individually. There is

much research going on now to evaluate exactly what the benefits of physical

therapy might be in our disease, but there is no clear direction yet and even if

there were research to support exercising, it would still be different for each

one of us, based on our own individual degree of joint/muscle deterioration and

weakness. We each need to do what we feel is best with our own bodies with the

help of trusted medical professionals and not judge what others do.

>

> As for recommending that an 8 year old child work out with weights, I would

highly caution that mom to consult with her son's doctor before beginning any

activity like this. Many pediatricians don't recommend that healthy children

start with weights this young, even more so with a child who may have CMT.

>

> For all of us, it's advisable to consult with a physician before beginning

any program. It's also advisable to work with a knowledgable physical therapist

to learn appropriate exercises and how they should safely be done based on our

unique individual conditions/issues. Gretchen has also posted much information

in the past about many things to watch for in exercising, in order to make sure

we're not overdoing it and causing further damage. I would recommend this

reading for anyone who's planning to begin a new exercise regime.

>

> In summary, , it's great that you share what works for you. You are

39, on disability, and you use a wheelchair, but even still, you are able to

workout and feel that exercising is helping you. That's wonderful for you and

sharing your information can be valuable to others. But you still need to guard

against giving medical advise to others. Even a medical doctor would refrain

from giving medical advice over the Internet, especially to a person whom he/she

didn't know and had never seen. It's just not wise and could cause others harm.

>

>

>

>

>

>

>

[Guest guest]

Hello,

I am giving my experiences. .Working out is the best way for me to manage CMT.

Yoga,pilates working out with weights,pool,stretching riding the staionary bike

helps out alot. Its a choice. But with me im not hoping for a cure. Im thankful

I have CMT.

>

[Guest guest]

lifting weights has made me stronger.I been doing since I was 14 years old.

Machines work out is good for me too.My Neuroligist told me to keep working out

..She is in Orlando and knows alot about CMT. She told me to keep doing what I

been doing.

[Guest guest]

I went through MDA and was referred to a superb neurologist and physical

therapists. They worked together as a team. We were very blessed to find

physical therapists who knew how to work with CMT and what type of exercising

was safe. My daughter needed braces and they worked with her during all her

growing years and really did a great job at keeping her feet positioned

correctly and having her walk with a proper gait.

As I found out when I was young, some muscles just did not respond to strength

exercising no matter how much I tried. Just wish I knew back then what was

wrong. It would have made life much easier to deal with.

[Guest guest]

I have to think about this with Adam too. He gets hurt when he pushes

himself to hard. He has weights and enjoys them but he takes it very easy. My

older CMT son works out at the gym mostly upper body. He loves it.

[Guest guest]

hello guys.. i just would like ta ask/confirm.. does excercise help us delay the

atrophy of our muscles or it makes it faster? thank you so much..

Frederick

[Guest guest]

Frederick,

Well being on my feet all the time I have kept the muscle but I have alot of

pain with legs and feet. Also I have severe numbness.

Tamara

[Guest guest]

This is a late reply to Brain, fitness35...

I totally agree that keeping strength and being as strong as possible is the

best way to manage CMT - if you can exercise, do it!

You can read more about what I am doing, and my progress and goals, on

www.myfitnessyear.com and in particular click onto my blog. I hope you will

enjoy it!

Donna from London

[Guest guest]

To (agraham2k):

Thanks for your post.

Often I read about " no amount of exercise will bring back a muscle that has

atrophied " .

I have discussed this at length with the research team at the UK's Institute

of Neurology, and they have told me that for some people, with

re-innervation, that as long as a muscle mass is at about 15%, that muscle

mass can return. It is long, slow and not easy for folks with CMT to do

this - although we must not say this is impossible.

You are right - we are all different. But we should support any attempt

folks make to keep active and healthy.

Donna from London

www.myfitnessyear.com

[Guest guest]

To Gomez:

I am catching up on old posts, and saw that you ride a road bike with

pannies!

I just wanted to share that I just cycled in the Tetons on a road bike (my

first time on a road bike - I own a hybrid) and I LOVED IT!

Also, did you know one of the bronze medallists at the Beijing Olympics for

the cycling TT ( Zahn) has CMT?! Inspiring!

All the best from London,

Donna

www.myfitnessyear.com

[Guest guest]

Hi ,

You may be interested that I am participating as a guinea pig in a series of

exercise related studies here in the UK. The first study (done before I

joined) showed that people with CMT (1A I believe) use their hip flexors to

walk in a much greater proportion than non-CMT people. The study I am doing

is measuring the impact of dedicated exercise on hip flexors and gait,

endurance and speed. I cannot report the ins and outs of the study, as it

is blind for the researchers, but it is interesting.

More and more the physiotherapists here believe that exercise / muscle

strengthening is critical for people with CMT. This is a change from what

used to be " prescribed " by the medical community. I receive nothing but

encouragement for pushing myself and my limits, as long as I am not causing

myself pain or fatigue.

A doctor cannot assess an individual's tolerance to exercise, but only

monitor the impacts. With the use of the VAS pain scale, and RPE effort

scale, I am tracking how I feel while exercising in the research. And with

my coach, I am following my sleep patterns, my fatigue levels, and overall

wellness / exertion daily as relates to my training.

I am happy to share more about my programme if you would find it of

interest. I am able to do a high degree of activity (but I must hasten to

add - I am by no means the best at triathlon, I just do it because I can and

I love it). You can also read more on my blog. I have been blogging since

May... And will do throughout the next year.

Donna from London

www.myfitnessyear.com

[Guest guest]

Hi Donna,

 

Encourage your doctors to publish whatever they have discovered about rebuilding

muscle, so the medical community can be informed and appropriate treatment

developed.

 

Thanks,

[Guest guest]

I agree with Donna, this damn disease is the epitome of " if you don't use it you

lose it. " Unfortunately it also seems that if you over use it you lose it as

well. One really has to learn to tune into their body and discover what must be

done to remain as able as possible, as long as possible, that includes not only

exercise but diet, lifestyle and emotional/spiritual well being as well. 

Ed

 

This is a late reply to Brain, fitness35...

I totally agree that keeping strength and being as strong as possible is the

best way to manage CMT - if you can exercise, do it!

You can read more about what I am doing, and my progress and goals, on

www.myfitnessyear. com and in particular click onto my blog. I hope you will

enjoy it!

Donna from London

[Guest guest]

Hi Donna,

 

Thank you.  I did see that research on the hip flexors that was posted here last

month.  That's one of the things that got me thinking about the topic.

 

I started to think back over the years and remembered that there were decades

where I did have strength to do things.  Many years ago, when I worked out with

a personal trainer who was highly educated in rehab medicine, I made some

definite progress, and then when I pushed myself to dance, I made even more

progress.  I didn't know I had CMT at the time and I wonder if I had known,

would it have changed things.  Would the fear of overusing my muscles have

stopped me from pushing so hard?  And would that have been detrimental? 

Possibly yes and yes, which concerns me for other's sake.

 

While it's important to exercise caution and not overdo, there's a risk of

scaring new people and young people into not exercising.

 

What you are doing is awesome.  You are in great shape and increasing your

chances for a more mobile future by building your muscles up as much as you can

now and keeping a healthy weight, both important things.  I applaud you. 

You're a role model, taking away the fear for young people and newly diagnosed

people.  It's wonderful.

 

Also, it's great that your doctors are doing research on this topic and

publishing it.  If guidelines can be established for the medical community, then

perhaps we can get the insurance companies to pay for it to educate CMT

patients.

 

Keep up the excellent work!

 

[Guest guest]

Hi ,

I was reading your reply and noticed that you said your knees dislocate - so

do mine, and I have also dislocated an elbow. Holli has shoulders that

easily dislocate, and we were both given a diagnosis of benign hypermobility

(Ehler's Danlos Syndrome).

I am in the process of becoming very active and strong again through

triathlon. I must admit that if I had the same attention and care when I

was young as I have assembled around myself now, I don't think I would have

had the surgery given to me at age 13, and in fact I think I would be in a

better place physically. I am getting there, though, with good physio

therapy, braces, stretching, and exercise.

You are so right that we all need to find what works for us individually -

and we also need to be open to try new things. Through this group I have

found info on IMS and have introduced it into my routine. A painful (but

great) addition.

Good luck,

Donna from London

[Guest guest]

Hi ,

Going through the posts I noticed that Reilly and team presented a

poster session in Antwerp earlier this year which was summarised and on our

list. In short, it indicates that they had studied hip flexor strength and

were doing follow up studies, which I am involved with.

I wonder if it is a difference of approach with the UK versus the US? I was

just back in the US for holidays and noticed a lot of differences and

misperceptions on our systems.

If you have any questions about what I am doing I will try to help to answer

(as much as I can). Have a great day!

Best wishes,

Donna from London