Re: Exercises and CMT

[Guest guest]

Hi Joana,

You may be overdoing it. Your legs should not feel like jelly, nor should you be

so fatigued after. Perhaps water exercise (walking in a pool/aquatic exercises

might be a better idea. Or Yoga. Or Tai Chi. Or Mat Pilates. Maybe short

bicycling. (can be done on a recumbent bike at your gym) As for your personal

trainer, not many sincerely understand exactly how our muscles work, and will

push you beyond your boundaries.

Here is a direct link to about 3,000 posts on exercises from our Archives.

/msearch?query=exercise & charset=window\

s-1252

Also see the Excercise File Folder, open it and read many articles there,

especially one from Dr. Shy and also Dr. Chetlin.

It may be that just doing exercises at home that your physio taught you is

enough for your body. Or, at the gym, ask your trainer to show you exercises to

build your inner core and keep your upper body strong. Remember, over-exercise

creates a type of stress on the body and any kind of stress can exacerbate CMT.

Gretchen

[Guest guest]

Hello All,

IMHO - You're doing too much and should back off some. Again, IMHO -

exercise is okay and necessary but only to what one can tolerate, also I feel

that it is possible to do permanent damage by exercising too much.

Ed More

[Guest guest]

Joana,

I would not be doing what you are doing. Firstly, walking like a duck? Do you

mean foot slap as a result of foot drop? Find a new exercise where foot

slapping does occur. Swim? Bike? Next MDA had a article on strength training

with a neuro muscular issue- take a look for that as a guide.

Kim

[Guest guest]

Dear Kim

Yes foot slap, making noise when I walk ... i didn't know how to explain about

the foot but yes

it is a funny way walking ... I have a foot drop too and also

now the calves muscles are very weak (atrophyed) ;(

I will have a look at the article you sugested me...

Thank you very much Kim

Have a nice saturday

Jo

>

> Joana,

>

> I would not be doing what you are doing. Firstly, walking like a duck? Do you

mean foot slap as a result of foot drop? Find a new exercise where foot

slapping does occur. Swim? Bike? Next MDA had a article on strength training

with a neuro muscular issue- take a look for that as a guide.

>

> Kim

>

>

>

>

>

[Guest guest]

Here's how I handled the gym issue. I do go to the gym about 3 times a week..

more if I feel like less if I don't. I've been going for a year now.

I started with 1 day a week and I biked for 3-5 minutes. As I could do that

comfortably, I s..l...o...w..l...y increased my time to 5-10 minutes and 2 days

a week. Then I proceeded to 10-15 minutes and 3 days a week. I s..l..o..w..l..y

added free weights - start small.

[Guest guest]

From what I understand from my doc and PT, it is not good to exercise yourself

to this point of fatigue. Does your gym have a pool? I wonder if changing your

excercise to aqua-jogging might help. I also hear that some have success with

pilates or yoga. Maybe something that does not require you to bear weight on

your legs the entire time like the treadmill does.

[Guest guest]

Me too,, I like going to the gym. Have been doing it now almost a year and just

joined for two more.  I go two to three times a week.  Change my routine each

time.  I can DEFINETLY feel a difference in muscle tone, upper and lower

body.  Of course nothing will cure the drop foot I have on the left so I have

to be very careful wandering around the gym especially when there are alot of

women there.  But I like it and know when I get home I sit in the recliner for

about 15 -30 minutes and drink my tea to regroup and get up and cook dinner. 

It works for me.

Elaine in Florida

Elaine 

From: ET <erinrachael76@...>

Subject: Re: Exercises and CMT

Date: Saturday, June 19, 2010, 1:28 PM

 

Here's how I handled the gym issue. I do go to the gym about 3 times a week..

more if I feel like less if I don't. I've been going for a year now.

I started with 1 day a week and I biked for 3-5 minutes. As I could do that

comfortably, I s..l...o...w..l...y increased my time to 5-10 minutes and 2 days

a week. Then I proceeded to 10-15 minutes and 3 days a week. I s..l..o..w..l..y

added free weights - start small.

[Guest guest]

Joana has a good question here. I'll check out the file you suggest, Gretchen. I

have similar issues. I am often shaking and jelly legged and armed after

physical exersion. I also have the loose jointed issue that makes it easier to

pinch nerves. The trouble I have is that, as everyone has pointed out here, I am

probably overdoing it and should not push it so hard -- but I never know where

that line is until after I stop and relax.

I can do almost anything as long as I just keep moving. Once I stop I actually

have trouble getting out of a chair and a very hard time walking. I can hardly

hold a glass without spilling. It's always a surprise because I felt fine the

whole time I was out and doing. I have also injured myself worse in PT than

expected because neither I or the therapist realize that I'm going too far until

it's too late.

Unfortunately I've put on weight because I get worried about injuring myself

through excercise. I did just buy a bicycle, though. I have a nice flat bike

path near the house. I'm looking forward to some leisurely rides that will get

me moving safely.

Holli

[Guest guest]

Hi Elaine,

I'm wondering about something you wrote. You said that because of your foot drop

you have to be careful wandering around the gym when there are alot of women

there. Is it more difficult to walk because it is congested?

To all: I use a Nustep (a seated recumbent stepper) and it is a godsend. I use a

wheelchair, but I can ride my NuStep for hours and not get the " jelly legs " . I

usually do it at night before bed, and then have the rest of the night for my

muscles to be refreshed before morning. It's pricey, but alot of gyms have them,

too. I'm also doing strength training with resistance bands on my upper body and

can REALLY tell a big difference... I'm acquiring lovely definition in my arms

and shoulders. Resistance bands are readily available at Walmart. I also

exercise in bed... it's fun to put on great music and then just move my body...

rolling over, situps, leg lifts... I really love doing this because: 1) it's

safe- no worries about falling, 2) it's relaxing and strenuous, 3) I sleep like

a log after 30-40 minutes of exercise.

Despite my pretty advanced case of CMT, I find myself exercising more than any

other time in my life. My goal is to be a very, very fit woman who uses a

wheelchair.

Regards to all,

Lynna

[Guest guest]

Hello Holli and All,

IMHO - If you are shaking after working out, I believe you are well over a

tolerable limit of exertion. Using a mechanical analogy, an electro mechanical

device that dithers after imposition of a large load has been strained beyond

its component processes limits and has not returned to normal operation.

I fly electric powered radio control airplanes with receivers and electro

mechanical devices called servos that actually move

the control surfaces. When a servo dithers, it has been stalled or over torqued

with reverse loads or been subjected to crash loads. This

definitely makes them unserviceable and we throw them away.

The most plain effects that prove this analogy to be true is the consistent way

post stressful days produce muscle jerks during sleep at night which wake me up.

I take a small dose of Neurontin and Flexeril before going to bed each night to

prevent the muscle jerks. This was prescribed by a sleep study and a sleep

specialist doctor some years ago. Every couple of years I might run out of the

pills or just stop taking them for a couple of days.

The muscle jerks come right back each time. This is a relative

light over stress condition. If muscles dither right after exercise, I

would say that this is an order of magnitude worse condition. How is your

sleeping the night of the exercise day? When I say " sleep study " , this was a

visual observation as well as 65 electrodes glued to my head recording brain

waves produced by the jerks.

I remember one night years ago when I thought me knee had come up and hit my

jaw, but being half awake at the time I couldn't swear that it did. I'm pretty

long legged so I think it is possible. All I really know is that I have slept

much better since taking up this regimen.

EdM from NH

____________________________________________________________

[Guest guest]

Joana,

I will get the artical --- I may need to fax it to you - but

It will take me a week or so.

Thanks

Kim

>

>

>

>

[Guest guest]

I guess I should clarify. I jumped onto Joana's question about working out. I

really don't work out anymore -- because I always feel this way after. I get the

jelly legs and jelly arms, difficulty getting out of a chair and walking and

shakey hands to the point of spilling drinks after routine housework and

yardwork. Typical scenario: I go out and set up the sprinkler, then notice that

a flower bed needs weeding, I might plant some flowers, then move the sprinkler

and while I'm out there do a little trimming of the ivy. I'm also likely to

decide to lug a bag of potting soil to the other side of the patio because it's

easier to do that than to call my husband or son to do it for me. Then I come

in, sit down and have some ice tea, realize I can barely hold the glass and then

find I can't get back out of the chair. Then I do what my family affectionately

terms, " the monster walk " where I have to swing my legs at the hip to get

forward motion. The thing that always gets me is that the whole time I'm doing

that stuff, I feel great. It's only later when I sit down that I pay.

I also get the fasciculations for the next day or so after I push myself to that

point. Mostly in the calves but arms, too. I will say that one of the best $20 I

ever spent was on a " kneeler " that flips from a little bench to a padded place

to kneel with handles to help stand. This has improved things a lot. Before, I

couldn't get on the ground without an ordeal getting back up. I have to go

through the whole undignified tri-pod thing to get off the ground. With my

kneeler, I grab the handles and just stand right up.

Yesterday, I spent a few hours in the kitchen making my husband a nice father's

day dinner. I didn't have shakey arms, but I did have the trouble getting back

up after I sat and the monster walk. For these reasons I haven't even tried

going to the gym (and the fact I usually injure myself while under the

supervision of a PT). I hope that doesn't make me unservicable and thrown

away...

BTW, I take nothing but Tylenol, Advil and Naproxen as needed.

Holli

>

> Hello Holli and All,

>

> IMHO - If you are shaking after working out, I believe you are well over a

tolerable limit of exertion. Using a mechanical analogy, an electro mechanical

device that dithers after imposition of a large load has been strained beyond

its component processes limits and has not returned to normal operation.

>

> I fly electric powered radio control airplanes with receivers and electro

mechanical devices called servos that actually move

> the control surfaces. When a servo dithers, it has been stalled or over

torqued with reverse loads or been subjected to crash loads. This

> definitely makes them unserviceable and we throw them away.

>

> The most plain effects that prove this analogy to be true is the consistent

way post stressful days produce muscle jerks during sleep at night which wake me

up. I take a small dose of Neurontin and Flexeril before going to bed each night

to prevent the muscle jerks. This was prescribed by a sleep study and a sleep

specialist doctor some years ago. Every couple of years I might run out of the

pills or just stop taking them for a couple of days.

>

> The muscle jerks come right back each time. This is a relative

> light over stress condition. If muscles dither right after exercise, I

> would say that this is an order of magnitude worse condition. How is your

sleeping the night of the exercise day? When I say " sleep study " , this was a

visual observation as well as 65 electrodes glued to my head recording brain

waves produced by the jerks.

>

> I remember one night years ago when I thought me knee had come up and hit my

jaw, but being half awake at the time I couldn't swear that it did. I'm pretty

long legged so I think it is possible. All I really know is that I have slept

much better since taking up this regimen.

>

> EdM from NH

> ____________________________________________________________

>

[Guest guest]

Dear Jo,

I am at business meeting and need to be home to get my referrences for you. 

after rereading what you have wriitten if any professional has worked you so

hard or you have felt the way discribed you need to stop and read some very

basic conditioning books.  anything you do that causes addiitional weakness or

pain increase or nueropathy symtoms should be stopped! and if a professional is

involved they should be fired.  I am including some links I found with my

searches tonight, inaddition I am including a general review from a study in

uk. 

the first step to movement is submaximal weight or movement ------ submaximal

will be different for everyone - but if lifting a tooth pick 5x causes pain stop

and once pain goes away do 1x with tooth pick --- the next day do 2x etc....

submaximal!!!!

Please read my past post which I believe include some pdf files of what balance

enhancement can do.  I currently have returned to physicall therapy and am

working on my core strenght which means I am doing the wii fit 60 mins a day (I

am trying).  but my core is improving and I do not move my limbs.  some day I

will get to that old limb movement exercise.  I can not even swim without

throwing my SI joint out but I believe starting slow and keep trying will get me

where i need to be.

anyway change your searches and look at the below links untill I find my

exercise piece for you- do be a hero or show off - finding sub maximal takes

patience and self awareness- good luck .

http://sportsmedicine.about.com/cs/rehab/a/aa051203a.htm

http://www.lindacrabtree.com/cmtnews/Exercise/Dr.%20%20interview.html

Kim

>

>

[Guest guest]

Dear Kim

I hope all is well

Thank you so much but I do not have a fax machine here

I do have only email address and msn, skipe ...but no fax (

what to do now?

I really would love to say ...thank you a LoT!

Have a wonderful day!!!!!!!!!!!

Hugs

Joana

>

> Joana,

>

> I will get the artical --- I may need to fax it to you - but

> It will take me a week or so.

>

> Thanks

> Kim

>

> >

> >

> >

> >

[Guest guest]

Hi Lyn

Yes ... wearing a wet suit could be a good idea indeed

People would think I am going a bit mad at the pool hehe

but i will have a look at to see some designs after all

That maybe could save my life lol

The pool here is very cold too

All the best wishes & thanks

joana

>

> Joana,

>

> I can no longer do anything at the gym, not even a stationary bike.  So I

decided to get a free 1 week tryout of the water aerobics class at our Y. Well,

after one tryout I did not think I could do the class as I was freezing in the

water (I'm freezing on dry land too).  The pool was 84 degrees, but to me it

felt 32 degrees.

>

> My husband suggested trying the class while wearing a wet suit.  That solved

the problem. I am cozy in the pool now, so I signed up.  I have been going 3

times a week and I really feel it has strengthened my core muscles.

>

> Lyn

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I've never been sure what they meant by not exercising to fatigue. I know

trainers will tell people to use a machine until then try, but can't do that one

last repetition (the muscle is exhausted). I'm sure that's bad for CMT, but most

people recover with a few minutes rest.

I'm doing PT starting with 30 min pool exercises which seem pretty easy. That's

followed by 15 minutes on a bike, about 10 minutes of walking and balance

exercises and another 10 mins with dumbbells.

I'm pretty tired afterward but not shaking or feeling like jelly legs but I go

right home and rest. I don't think this is too much but how do you tell.

[Guest guest]

I would say if normal rest makes you feel OK, then you are not doing too much.

Reading what you do would definately be too much for me, so, you see it is

different for everyone and the key is to listen to how your body responds AFTER

you are done exercising and adjust the exercises accordingly.

Jackie

[Guest guest]

Holli,

Sounds like my routine too. I also have the kneeler with the handles that

doubles as a seat. I got it from Gardener's Supply (online)

http://www.gardeners.com/Garden-Kneelers/PropertyMaintenance_YardCleanUp,35-

662RS,default,cp.html. I use the seat part of it when out with the

grandkids, but I would not be able to function in the yard without flipping it

over to the kneeler w/handles. I read an article in Neurology Now about us

folks with gait disorders and am starting to go back to the treadmill for short

walks stating tomorrow. I will avoid jellylegs.

Clyde

[Guest guest]

I just wanted to write a little about my experiences with exercise and CMT. As

many people know I am VERY ACTIVE with CMT. I have CMT - it is relatively mild

but still noticeable. My CMT is especially noticeable as I am a triathlete and

someone seeking to push the boundaries - I do triathlon and train with some

really fast people, and can swim better than the fastest runners, but I am about

as slow as mud when it comes to the run.

My typical exercise regime is not advisable for anyone without consultation of

professionals (I have sought advice from my doctors, physiotherapists and I have

a dedicated triathlon coach who works with me / my condition to develop my

programme). But I do think I have learned some things that can translate to any

level of exercise - beginning to advanced, especially for people with

challenges.

For me I regularly have " twitches " or " fasciculations " following activity. I

have asked my medical team if these are at all a sign of possible CMT related

deterioration due to my exercise, and although there is debate on this, there is

not currently a known definitive answer. I monitor the severity of the

twitching (seems weird but it is true - I report to my coach on this with daily

activity monitors) and I also monitor my levels of fatigue - and if either gets

too much I scale back exercise.

What is fatigue? Well in training, fatigue is literally when I am doing an

activity and my legs shake WHILE DOING IT. When I run, I know I am fatigued

when my leg alignment is wrong, when I find myself losing balance or feeling

wobbly, when I feel like I need to use my arms for balance. When I bike this is

when my legs feel weak like jelly when pedalling (not after). It is ok to push

yourself to fatigue for learning and to build strength and conditioning - for

normal athletes this is all a part of the process of improvement - but for a

person doing sports with CMT, this comes with risks. You can't just fatigue and

then expect to bounce right back. You have to accept you may need a huge nap

later or that you can't walk well for a day or you may decide you can't cope and

that this degree of exhaustion is not for you. I train with fatigue - to do a

triathlon the athlete needs to learn to " race on tired legs " - but I do this

SUPER CAREFULLY and with a coach and medical supervision.

I think each individual by paying attention to levels of fatigue, weird

reactions to exercise, how they feel (keep a journal - I do and find this a

great tool) can develop a programme that works for them.

Then gradually you can increase the level of activity you do.

For example, when I started triathlon about 3 years ago in 2007, I did about 3

sessions of training a week. In 2009 I changed my approach and I have moved

from 3 a week to 10 a week (each session lasting from 30 minutes to 3 hours). I

built up to this through consistent training and constant feedback and dialogue

with myself. I give myself rest days and recovery weeks.

With a consistent (and yes trust me it is also a frustrating) approach to

exercise I have seen my strength and condition improve tremendously - but it is

taking me about 4 times longer to see improvement than a " normal " athlete. A

year ago I did not think I would ever be able to do anything resembling running.

I found 30 seconds next to impossible. I have extremely loose joints and

dislocating knees and atrophy to my quadriceps. One year later of constant

training, strength building, medical support and working with my doctors, and I

am able to run a constant 5k and this morning I did a constant 27 minutes of

running (I need to say at a VERY SLOW PACE - like 13 minute miles) without any

problems.

I firmly believe that with the right approach we can become strong. But we have

to be REALLY CAREFUL.

This is my approach. I am happy to share with anyone who wants to know more.

You can also read more on my website and blog, www.myfitnessyear.com - I am soon

changing my website name (!) as the year is almost over... :-)

Donna from London

[Guest guest]

Dear Kim,

I hope all is well. Thank you so much for your kindness and time here

Thank you for all the help and advice. I will have a loo at those links bellow,

there are quite a lot to see and do without any doubt

I have a poor internet line at the moment but I will let you know after ok?

So far I am not going to the gym much, being feeling a bit low

but I hope to do more ... By the way I forgot to say that I do have also at home

a Wobble Board ...and a bike in my bedroom too.

Today I haven't done anything but I will tomorrow I hope!

Are you in USA ?

Have a wonderful day and stay well Kim.

God Bless You!!!!!!!

Hugs

Joana

>

>

>

[Guest guest]

That's great you're able to be so active!

As for my story - if this may help any in a similar situation - my CMT is

severe, i.e., no movement at all below the elbows, and none below the knees,

with severely weak thigh/back muscles, as well as upper arm. So, just getting

from the bedroom to the front door requires a substantial expenditure of energy.

Traditional exercises are, of course, out of the question. What I have done,

however, is break open the piggy bank, and purchase a Juvent Dynamic Motion

Therapy devise, from Juvent Medical. They modified it for me so it will come on

regardless of the amount of weight I have on it, e.g., only my hands, or feet. I

certainly don't expect this devise to 'cure' my CMT, make me stronger or allow

me to run a marathon, but it does keep the juices flowing, so to speak. It is

similar to a Whole Body Vibration devise, but it is definitely NOT a WBV - the

physics are different.

http://www.juvent. com/

>

> I just wanted to write a little about my experiences with exercise and CMT.

As many people know I am VERY ACTIVE with CMT. I have CMT - it is relatively

mild but still noticeable. My CMT is especially noticeable as I am a triathlete

and someone seeking to push the boundaries - I do triathlon and train with some

really fast people, and can swim better than the fastest runners, but I am about

as slow as mud when it comes to the run.

>

> My typical exercise regime is not advisable for anyone without consultation of

professionals (I have sought advice from my doctors, physiotherapists and I have

a dedicated triathlon coach who works with me / my condition to develop my

programme). But I do think I have learned some things that can translate to any

level of exercise - beginning to advanced, especially for people with

challenges.

>

> For me I regularly have " twitches " or " fasciculations " following activity. I

have asked my medical team if these are at all a sign of possible CMT related

deterioration due to my exercise, and although there is debate on this, there is

not currently a known definitive answer. I monitor the severity of the

twitching (seems weird but it is true - I report to my coach on this with daily

activity monitors) and I also monitor my levels of fatigue - and if either gets

too much I scale back exercise.

>

> What is fatigue? Well in training, fatigue is literally when I am doing an

activity and my legs shake WHILE DOING IT. When I run, I know I am fatigued

when my leg alignment is wrong, when I find myself losing balance or feeling

wobbly, when I feel like I need to use my arms for balance. When I bike this is

when my legs feel weak like jelly when pedalling (not after). It is ok to push

yourself to fatigue for learning and to build strength and conditioning - for

normal athletes this is all a part of the process of improvement - but for a

person doing sports with CMT, this comes with risks. You can't just fatigue and

then expect to bounce right back. You have to accept you may need a huge nap

later or that you can't walk well for a day or you may decide you can't cope and

that this degree of exhaustion is not for you. I train with fatigue - to do a

triathlon the athlete needs to learn to " race on tired legs " - but I do this

SUPER CAREFULLY and with a coach and medical supervision.

>

> I think each individual by paying attention to levels of fatigue, weird

reactions to exercise, how they feel (keep a journal - I do and find this a

great tool) can develop a programme that works for them.

>

> Then gradually you can increase the level of activity you do.

>

> For example, when I started triathlon about 3 years ago in 2007, I did about 3

sessions of training a week. In 2009 I changed my approach and I have moved

from 3 a week to 10 a week (each session lasting from 30 minutes to 3 hours). I

built up to this through consistent training and constant feedback and dialogue

with myself. I give myself rest days and recovery weeks.

>

> With a consistent (and yes trust me it is also a frustrating) approach to

exercise I have seen my strength and condition improve tremendously - but it is

taking me about 4 times longer to see improvement than a " normal " athlete. A

year ago I did not think I would ever be able to do anything resembling running.

I found 30 seconds next to impossible. I have extremely loose joints and

dislocating knees and atrophy to my quadriceps. One year later of constant

training, strength building, medical support and working with my doctors, and I

am able to run a constant 5k and this morning I did a constant 27 minutes of

running (I need to say at a VERY SLOW PACE - like 13 minute miles) without any

problems.

>

> I firmly believe that with the right approach we can become strong. But we

have to be REALLY CAREFUL.

>

> This is my approach. I am happy to share with anyone who wants to know more.

You can also read more on my website and blog, www.myfitnessyear.com - I am soon

changing my website name (!) as the year is almost over... :-)

>

> Donna from London

>

[Guest guest]

Hi there ...

Good Morning everyone!

Talking about this one that we have at the gym ...

http://vidaroyal.files.wordpress.com/2010/02/powerplate11.jpg

thank you for sharing and good luck !!!!

have a nice day

Joana

> >

> > I just wanted to write a little about my experiences with exercise and CMT.

As many people know I am VERY ACTIVE with CMT. I have CMT - it is relatively

mild but still noticeable. My CMT is especially noticeable as I am a triathlete

and someone seeking to push the boundaries - I do triathlon and train with some

really fast people, and can swim better than the fastest runners, but I am about

as slow as mud when it comes to the run.

> >

> > My typical exercise regime is not advisable for anyone without consultation

of professionals (I have sought advice from my doctors, physiotherapists and I

have a dedicated triathlon coach who works with me / my condition to develop my

programme). But I do think I have learned some things that can translate to any

level of exercise - beginning to advanced, especially for people with

challenges.

> >

> > For me I regularly have " twitches " or " fasciculations " following activity.

I have asked my medical team if these are at all a sign of possible CMT related

deterioration due to my exercise, and although there is debate on this, there is

not currently a known definitive answer. I monitor the severity of the

twitching (seems weird but it is true - I report to my coach on this with daily

activity monitors) and I also monitor my levels of fatigue - and if either gets

too much I scale back exercise.

> >

> > What is fatigue? Well in training, fatigue is literally when I am doing an

activity and my legs shake WHILE DOING IT. When I run, I know I am fatigued

when my leg alignment is wrong, when I find myself losing balance or feeling

wobbly, when I feel like I need to use my arms for balance. When I bike this is

when my legs feel weak like jelly when pedalling (not after). It is ok to push

yourself to fatigue for learning and to build strength and conditioning - for

normal athletes this is all a part of the process of improvement - but for a

person doing sports with CMT, this comes with risks. You can't just fatigue and

then expect to bounce right back. You have to accept you may need a huge nap

later or that you can't walk well for a day or you may decide you can't cope and

that this degree of exhaustion is not for you. I train with fatigue - to do a

triathlon the athlete needs to learn to " race on tired legs " - but I do this

SUPER CAREFULLY and with a coach and medical supervision.

> >

> > I think each individual by paying attention to levels of fatigue, weird

reactions to exercise, how they feel (keep a journal - I do and find this a

great tool) can develop a programme that works for them.

> >

> > Then gradually you can increase the level of activity you do.

> >

> > For example, when I started triathlon about 3 years ago in 2007, I did about

3 sessions of training a week. In 2009 I changed my approach and I have moved

from 3 a week to 10 a week (each session lasting from 30 minutes to 3 hours). I

built up to this through consistent training and constant feedback and dialogue

with myself. I give myself rest days and recovery weeks.

> >

> > With a consistent (and yes trust me it is also a frustrating) approach to

exercise I have seen my strength and condition improve tremendously - but it is

taking me about 4 times longer to see improvement than a " normal " athlete. A

year ago I did not think I would ever be able to do anything resembling running.

I found 30 seconds next to impossible. I have extremely loose joints and

dislocating knees and atrophy to my quadriceps. One year later of constant

training, strength building, medical support and working with my doctors, and I

am able to run a constant 5k and this morning I did a constant 27 minutes of

running (I need to say at a VERY SLOW PACE - like 13 minute miles) without any

problems.

> >

> > I firmly believe that with the right approach we can become strong. But we

have to be REALLY CAREFUL.

> >

> > This is my approach. I am happy to share with anyone who wants to know

more. You can also read more on my website and blog, www.myfitnessyear.com - I

am soon changing my website name (!) as the year is almost over... :-)

> >

> > Donna from London

> >

>

[Guest guest]

The only thing I can say is that...

We are so different from each other...amazing this

I always felt very tired after exercises and my legs also feels like jelly

too...

So sorry to say, but now decided to stop a bit the gym and started do the wobble

board at home and bike too

Let's see the outcome

Take care

Hugs

Joana

>

>

> I've never been sure what they meant by not exercising to fatigue. I know

trainers will tell people to use a machine until then try, but can't do that one

last repetition (the muscle is exhausted). I'm sure that's bad for CMT, but most

people recover with a few minutes rest.

>

> I'm doing PT starting with 30 min pool exercises which seem pretty easy.

That's followed by 15 minutes on a bike, about 10 minutes of walking and

balance exercises and another 10 mins with dumbbells.

>

> I'm pretty tired afterward but not shaking or feeling like jelly legs but I go

right home and rest. I don't think this is too much but how do you tell.

>

[Guest guest]

Joana, Yes, I am in USA - Florida and Texas.Â

Stay up - don't get low. I try to keep moving forward no matter how little those

steps are. I work 60+ hrs a week and have a active life.  My phyical

limitations are mainly my back-aka Sacrum and Illeuim.  I have mild bilateral

foot drop and wear walk on afo's in my sneakers.  I only wear my AFOs when

walking or activity.  I no longer wear to work.  My fatigue decreased 100%

once I started wearing AFOs 2 yrs ago.   BIG step forward!

In addition, prolotherapy and osteopath maniplation has improved my SI by 100%

over the last 4 yrs.  BIG step forward.

I am almost 48yrs old.  Currently my focus is building core strenght.  I am

doing the wii video balance games and a few other  yogi and strength activities

for as long as I can each day(i am up to 1hr). I tryed a balance /wobble

board  and I threw out my back!  so I am not ready for that exercise.   

I am so healthy otherwise it is hard to understand how and why movement is so

difficult.  This is where the small steps come in.

Good luck too.

Kim

>

>

>

[Guest guest]

Kim, which type of CMT do you have?

>

>

>