Re: Muscle wastage and tone

[Guest guest]

Therese,

It all depends on if your muscles have atrophied or not. If not, muscle tone can

be developed to a certain extent. Do you have a physical therapist or psyiatrist

to work with for toning at a level you can do? I suggest something like lifting

soup cans, slowly, for short periods.

Do you have a pool or have one nearby? Simply walking in the water will build up

leg muscles - like I said, if atropy isn't present. Once atropy is present,

there is nothing that can be done. But you can still work on your upper body.

As for the protein in diet, don't believe so, but the diet/diet change may have

put your body into stress/shock, especially if you lost the weight quickly. We

know that body stress aggravates CMT, in additional to emotional stress.

I did the same sort of diet, but it wasn't low protein. It was balanced protein

earlier in the day with vegetables and fruit, later a bit more protein, brown

rice (great stabilizer) vegetables and fruit. I ate about 1300 calories a day -

6 days a week I was in the pool, gradually the pounds dropped. But no muscle

loss, as I was exercising while dieting. I am still in the pool, but not as

much, and now almost completely vegan.

If you can do some exercise, try it, start slow, go slow and work with someone

who knows you and your CMT challenges. Yes, it is possible and good for people

with CMT to exercise! You may want to try Yoga (there are many forms), Tai Chi,

chair exercises, etc.

Go look in our Files in the " Exercise and CMT " folder. Info from Dr. Shy,

Chetlin, etc. on exercise and CMT.

Gretchen

[Guest guest]

Somewhere there's a good article on exercise and the bottom line is

that if you are exercising CMT affected muscles they likely won't get

stronger. To know if the muscles you are exercising are CMT affected,

take it easy, and watch if the ones you are working get stronger. If

they do not, and don't push it, they are likely served by CMT affected

nerves and the nerves will stop firing the muscles if you push them

and the muscles will atrophy instead of getting stronger.

Keep a day to day record of whether your muscles get stronger when you exercise

them. Can you do ten repetitions, then 12the next day, then 14 a few days later

etc. or can you do ten once and that's it and never any

more or even less? If they don't get stronger over a couple of weeks,

or even get weaker, you might start thinking they are CMT affected and

likely won't get stronger. If so, don't push them.

For instance: I use my hands, I lose my hands over time. I used my

feet and legs and lost my feet and leg over time. I use my shoulders

and exercise my shoulders and they get stronger over time. I can

strengthen my stomach muscles and back muscles (core muscles) as they

aren't affected by CMT but my hands, feet and legs are as well as

other parts of me I know not to push. Unfortunately, just daily use

does in your feet and legs and hands over time. We don't need to

exercise them to lose them.

We vary so much but you can tell if certain muscle groups are CMT

affected by monitoring their ability to strength or not.

Just my two cents.

[Guest guest]

Hi ,

I have asked my neurophysiotherapist and her team at the UK Institute of

Neurology if in fact exercise can exacerbate CMT and their answer was a

definitive no.

In fact, the " healthy nerves " that are not as impacted by CMT can reinnervate or

serve muscles that would otherwise be served by CMT impacted nerves.

And in addition muscles that are functioning will hypertrophy or with exercise

grow and take load from the muscles that are not being served / stimulated due

to CMT.

There is a large body of research forming which is counterindicating the

orthodoxy of the last 30 years which held that CMT patients should do only

minimal exercise. This heartens me greatly, as it seems so intuitive to me that

if we can exercise smartly and without undue fatigue, we place ourselves in a

better position should we deteriorate. Deteriorate from a place of strength

rather than weakness, so to speak.

I have been working closely with my medical team with regard to my own exercise,

activity levels and rehab. I suggest that anyone interested do the same, as it

is important to be monitored and to have adequate rest and recovery when

building muscle tone.

From our experience (with me as guinea pig) it sometimes can take months to see

improvement. As you describe, monitoring is important. But equally it is

important not to increase activity quickly, as this can stress and fatigue

muscles. A gradual build seems to be best, and an athlete rule of thumb is no

more than 10% increase per week (although sometimes I will spend up to 3 weeks

at an activity level before feeling comfortable enough to increase). I would

estimate it takes me up to 4 times as long as a non-CMT athlete to build

strength, but I am able to build strength. It also takes me 4 times as much

patience, and equally I need to lose my competitive streak when it comes to

judging my own progress - it is a me v me game.

We are all different, so I agree the key has to be self monitoring and finding

good support with whom we can communicate and discuss our issues.

Best wishes,

Donna from London

www.beatinglimitations.com

>

> Somewhere there's a good article on exercise and the bottom line is

> that if you are exercising CMT affected muscles they likely won't get

stronger. To know if the muscles you are exercising are CMT affected, take it

easy, and watch if the ones you are working get stronger. If they do not, and

don't push it, they are likely served by CMT affected nerves and the nerves

will stop firing the muscles if you push them and the muscles will atrophy

instead of getting stronger.

[Guest guest]

Donna,

I agree with everything you've said, I think I said just about the

same thing.

On 18-Jan-11, at 7:57 AM, Donna wrote:

> Hi ,

>

> I have asked my neurophysiotherapist and her team at the UK

> Institute of Neurology if in fact exercise can exacerbate CMT and

> their answer was a definitive no.

>

> In fact, the " healthy nerves " that are not as impacted by CMT can

> reinnervate or serve muscles that would otherwise be served by CMT

> impacted nerves.

>

> And in addition muscles that are functioning will hypertrophy or

> with exercise grow and take load from the muscles that are not being

> served / stimulated due to CMT.

>

> There is a large body of research forming which is counterindicating

> the orthodoxy of the last 30 years which held that CMT patients

> should do only minimal exercise. This heartens me greatly, as it

> seems so intuitive to me that if we can exercise smartly and without

> undue fatigue, we place ourselves in a better position should we

> deteriorate. Deteriorate from a place of strength rather than

> weakness, so to speak.

>

> I have been working closely with my medical team with regard to my

> own exercise, activity levels and rehab. I suggest that anyone

> interested do the same, as it is important to be monitored and to

> have adequate rest and recovery when building muscle tone.

>

> From our experience (with me as guinea pig) it sometimes can take

> months to see improvement. As you describe, monitoring is important.

> But equally it is important not to increase activity quickly, as

> this can stress and fatigue muscles. A gradual build seems to be

> best, and an athlete rule of thumb is no more than 10% increase per

> week (although sometimes I will spend up to 3 weeks at an activity

> level before feeling comfortable enough to increase). I would

> estimate it takes me up to 4 times as long as a non-CMT athlete to

> build strength, but I am able to build strength. It also takes me 4

> times as much patience, and equally I need to lose my competitive

> streak when it comes to judging my own progress - it is a me v me

> game.

>

> We are all different, so I agree the key has to be self monitoring

> and finding good support with whom we can communicate and discuss

> our issues.

>

> Best wishes,

> Donna from London

> www.beatinglimitations.com

>

>

> >

> > Somewhere there's a good article on exercise and the bottom line is

> > that if you are exercising CMT affected muscles they likely won't

> get stronger. To know if the muscles you are exercising are CMT

> affected, take it easy, and watch if the ones you are working get

> stronger. If they do not, and don't push it, they are likely served

> by CMT affected nerves and the nerves will stop firing the muscles

> if you push them and the muscles will atrophy instead of getting

> stronger.

>

>

>

[Guest guest]

I have long thought there was nothing I could do to impede the progression of

CMT. I thought it would progress whether I exercised or not, and since, like

most Americans, I don't relish disciplined exercise, I chose the " not " route.

About a year ago, however, I acquired a Nustep recumbent, seated cross-trainer,

and I've been unstoppable ever since! (I am 49, and saw a pretty sharp and

marked increase in my CMT-related symptoms/ weakness during my late 30s and

then, especially, into my 40s. During that decade, I went from a fairly active

" normal " woman to a wheelchair user.

I was growing steadily weaker and more incapacitated. I had little strength in

any of the muscles in my legs (in fact, everything below my knees is

paralyzed,)my core muscles were weak (from nonuse), and I had little upper body

strength. In short, I was a physical train wreck, also carrying a great deal of

extra weight.)

Over the course of the last year, I have lost 50 pounds and have regained

significant functioning. I look and feel at least 20 years younger. My

cardiovascular system is healthy, my skin glows, and I am finding the sexy woman

within that I thought was gone forever. (I see myself potentially becoming a

disabled, middle-aged jock!)

I ride my Nustep for an hour (at least) each night, and follow that with a

workout using resistance bands for my upper body, and exercises I do from my bed

to work on my legs and core. I continue to be amazed by the changes in my body.

I am growing strong and fit. While I might not regain the ability to walk well

(I can still walk with crutches, just prefer to use the wheelchair for efficacy

and safety reasons), I know that I am building muscle and regaining lost

abilities in ways that are absolutely astonishing.

I'm approaching all of this without set expectations and just from a place of

curiosity and hopeful expectancy. The changes I have experienced over the past

year seem to me to be no less than miraculous.

Makes me wish I had stayed active during the past decade, but then I wouldn't be

having so much fun seeing this transformation now!

I'm glad to read that the research is shifting and that exercise is becoming

more recommended. That resonates with what I've experienced over the past

year.(I would add, also, that whether one exercises to try to keep or regain

tone, that it is essential to find a way to get aerobic exercise in order to be

healthy.)

Peace,

Lynna

[Guest guest]

Hi Gretchen!  Is it true...Once atropy is present, there is nothing that can be

done?  Most of my body is atrophied.  I'm off to the hot tub to try to build. 

Have a relaxing evening!  ;-)

Kay

Living On The Beautiful Oregon Coast, USA

59, Wow! I'm getting up there!!! 5 Family members With CMT1A

Living alone, using wheel chair, splints, Bipap because of severe breathing

problems at night.

One family member who passed away because of CMT

I believe it is, what it is... so living in a state of " LOVE " is what brings me

joy, peace, healing, and more love! ;-)

[Guest guest]

Hi Kay,

Yes, sad to say atrophied muscles cannot return to normal. But muscles that

haven't atrophied CAN pick up the slack. From my paddling/rowing in the pool I

have seen muscles I never knew I had, lol. Me and Arnie, ROTFL

Gretchen

Founder, maverick, 58, traveler, no footdrop, tremors controlled.

So. California

[Guest guest]

Gretchen,

This is also what I was told, but my more recent experience tells me

differently.

If you can establish neuro-communiucation, you can reestablish muscle tone, with

connective tissue having a great deal to do with it.

Careful not to equate tissues which are mutated into something else which is no

longer muscle, with weakened, insufficiently enervated muscle tissue. The latter

can absolutely be returned to functional status.

I would not be able now to do ankle circles if the muscles had been dead.

Just my two-cents,

On Feb 3, 2011, at 6:02 PM, gfijig wrote:

> Hi Kay,

>

> Yes, sad to say atrophied muscles cannot return to normal. But muscles that

haven't atrophied CAN pick up the slack. From my paddling/rowing in the pool I

have seen muscles I never knew I had, lol. Me and Arnie, ROTFL

>

> Gretchen

> Founder, maverick, 58, traveler, no footdrop, tremors controlled.

> So. California

[Guest guest]

In response to Gretchen / Kay's conversation:

My medical team has told me that with 15% of mass remaining that a muscle can be

returned to function.

I tend to agree with .

I chalk this up to constant research happening in the area of neurophysiology

which is proving past medical theories and models to be different than true

function and ability of the body.

Donna from London

CMT1A, very active

www.beatinglimitations.com

>

> > Hi Kay,

> >

> > Sad to say atrophied muscles cannot return to normal.

> >

> > Gretchen

[Guest guest]

I would love to get the us of my right hand back. Any idea how?

, 68, CMT2a

[Guest guest]

,

If you have enough muscle mass remaining I would connect with a

neurophysiotherapist - online or in person - to learn more about possible

rehabilitative courses.

Best wishes,

Donna from London

[Guest guest]

I lost the use of my hand driving. Using it in a quad grip to control

the steering wheel. How would using it even more bring it back? I'm

serious. I can't figure that one out. Finding a neurophysiotherapist

around here is like finding an armadillo. It's Canada! But, I'll

look. You never know.

St. Catharines, ON, Canada

On 5-Feb-11, at 1:42 PM, Donna D wrote:

> ,

>

> If you have enough muscle mass remaining I would connect with a

> neurophysiotherapist - online or in person - to learn more about

> possible rehabilitative courses.

>

> Best wishes,

> Donna from London

>

>

>

[Guest guest]

Hi ,

In the UK when I go onto the online physio database a search under

interest/specialisation of neurology pulled up 521 private practitioners.

There is an Association of Chartered Physiotherapists in Neurology here:

http://www.acpin.net/index.html

I would suggest reaching out to the Canadian equivalent organisation (or even

send an email to ACPIN) and see if they would have any recommendations of

physiotherapists with a deep interest in / research specialisation in CMT in

your part of Canada.

I am not able to say anything about how we come to each progress differently or

what will or won't work for one person versus another. But I do know from

interacting with my neurophysio that a lot of research is ongoing and the ways

in which neurological conditions are understood / being managed are ever

changing. That's why I suggest reaching out to a current practitioner who may

have an interest in CMT.

Best wishes from London,

Donna

CMT1A

>

I lost the use of my hand driving. Using it in a quad grip to control the

steering wheel. How would using it even more bring it back?

> Finding a neurophysiotherapist around here is like finding an armadillo. It's

Canada!