Re: Resistance exercise or weight training

[Guest guest]

All of the doctors (including CMT docs) and PTs I have known and worked with

over the years have always encouraged exercise. My doctor of diagnosis got me

swimming and walking in sand immediately after foot surgery. I still do both to

this day (some 40 years later) I also do an aquatic cardio program, bike and

horseback ride when I get the chance. Not to mention doing my garden stuff.

The point is to pace yourself. 10 minutes on one thing, another 10 on something

else. Work all muscle groups a bit and slowly, then build up a little every few

weeks.

Atrophied muscles cannot be built up or returned to 'normal' by exercise;

however, surrounding muscles that are not yet atrophied CAN. There is so much

obesity and overweight issues with CMT. The best for us is moving, not only that

but you (or guess I should say " I " ) don't want additional issues like a heart

attack or high cholesterol or anything else.

In addition to counting calories, exercise will help you loose weight, have more

energy and feel good about yourself. Set a timer if you have to, if 10 minutes

is too much, back down to 5. The point it to " just do it " .

Gretchen

[Guest guest]

If there is one thing I can fault my medical team en masse until I was 41 was

that there was no encouragement to exercise.

They took care of me well, but did not encourage me to exercise.

On Oct 5, 2010, at 11:33 AM, gfijig wrote:

> All of the doctors (including CMT docs) and PTs I have known and worked with

over the years have always encouraged exercise. My doctor of diagnosis got me

swimming and walking in sand immediately after foot surgery. I still do both to

this day (some 40 years later) I also do an aquatic cardio program, bike and

horseback ride when I get the chance. Not to mention doing my garden stuff.

>

> The point is to pace yourself. 10 minutes on one thing, another 10 on

something else. Work all muscle groups a bit and slowly, then build up a little

every few weeks.

>

> Atrophied muscles cannot be built up or returned to 'normal' by exercise;

however, surrounding muscles that are not yet atrophied CAN. There is so much

obesity and overweight issues with CMT. The best for us is moving, not only that

but you (or guess I should say " I " ) don't want additional issues like a heart

attack or high cholesterol or anything else.

>

> In addition to counting calories, exercise will help you loose weight, have

more energy and feel good about yourself. Set a timer if you have to, if 10

minutes is too much, back down to 5. The point it to " just do it " .

>

> Gretchen

[Guest guest]

I speak from experience -- look at my last few posts.

The endorphin rush after exercising is not worth damaging the still working

muscles one has, or more to the point, damaging what muscle tissue is still

working in the compromised muscles you may not even recognize yet.

I have massive thighs(hamstrings), the results of many years of bicycle racing,

referring professional soccer, and fox hunting on horseback. My similar massive

calf (gastrocnemius) muscles once measured at 18 1/2 inches in now shrunken to

just over 12 inches.

I am lucky as I can still ambulate by using my thigh muscles to swing what is

essentially a stick. What really saves me is that through physical therapy with

a therapist that understood CMT, I have regained enough ankle strength to allows

me to walk without AFOs. She used some techniques not recommended for CMT

therapy with me agreeing with " -- what can it hurt? "

I won't endanger those gains that took over 2 years to achieve by purposely

over-exercising.

Unfortunately, family emergencies required that I exercise way past what I knew

was safe. I still have my ankles, but what was left in my right gastroc appears

to be lost.

With the physiognomy I have, the only safe exercises I do are in deep water(feet

not touching the bottom of the pool) exercises. My major leg exercise is

swimming laps on my back using just flutter-kicks. No stress is exerted on any

part of my body, and the only muscles used are the hamstrings.

The best analogy I can use is think of retired American football players. After

the adrenalin of years and years of abuse subsides, these players pay their past

due body dues with arthritis and multiple joint replacement surgeries. We who

have neuromuscular diseases can't afford to gamble with what we have.

Best advice -- get to a physiatrist/rehabilitation doctor whose only interest is

maintaining the best quality of life for their patients.

Regards.

--Larry

[Guest guest]

Hi Lanman,

You know I am really active and a huge proponent of exercise with CMT.

The point about CMT - nothing is wrong with our muscles. Only our nerves have

problems, leading to muscle atrophy.

So in my opinion (and that of the doctors I am seeing) we should exercise to

protect the functioning of the muscles we do have.

There is evidence that muscles, once atrophy sets in, cannot be rebuilt. But

the critical mass is about 20% - if you have more than 20% of a muscle remaining

it can be built (this by the way is a layman's interpretation of the stuff that

has been explained to me in deeper more technical jargon by my docs). So as

long as you have something, it is worth using it and trying to strengthen it.

There is not a guarantee that this process will be successful or easy. I have

found it takes me a very long time to build muscle - I would say about 4x the

amount of time I think my friends have to get similar results. I also do things

slowly, with little time or effort added during each session. This is to

prevent too much strain.

Now, with the level of exercise I do, which is a lot, no one seems to think that

I am in danger of " overuse " which is commonly cited as a possible issue for

people with CMT. This too has varying views in the medical community - but here

to I think we can take a lesson regardless of different viewpoints. Doing too

much of anything quickly and for only a short period of time is not healthy. To

get the most out of exercise, strength and resistance training - especially with

nerves that do not work optimally - requires commitment, dedication, and for me

a slow build.

A good rule of thumb is to just start doing resistance work with your own body

weight. If you can get a theraband it is a great resistance tool that requires

no weight but your own. Then add about 10% extra (repetitions) a week. Then

with time you can add weights. I must admit after a year of consistent work I

have not increased my weights in about 6 months - I am just focused on listening

to my body and doing what feels right to get a workout and to maintain the

stability and strength that I have.

Good luck and feel free to email me at any time off list to discuss - happy to

share with you my own experiences and tips.

Donna from London

www.myfitnessyear.com

>

>

> Why do so many MD's make a point of saying we should not over exercise? I know

we need to save our energy, but as long as you don't exercise such that you

can't function the rest of the day why is it a problem?

>

> Also why do so many say we can't regain atrophied muscles? CMT only effects a

few muscles and most likely they can't be strengthened, but there's no reason

other can't even with moderately heavy exercise.

>

> I have discussed this with a few PT's and they say that as long as we don't

hurt the Peroneals that a CMT'er can build the surrounding and core muscles to

compensate for loss of strength from CMT. One said think of it a bit like a

stroke victim where other parts of the brain can learn to compensate for areas

lost. In my case with an ankle fused, the peroneals on that leg cannot be over

exerted.

>

[Guest guest]

I have peripheral neuopathy with drop foot on both sides - motor nerve

dysfunction. the VA thinks it came from longterm low level diabetes.

My drop foot isn't a problem unless I don't exercise my shin muscles. So I sit

in a chair upright and pull my toes up as far as I can and then do the opposite

- like sitting on tip toe. I do 100 of those a day and my very weak shin

muscles get stronger for a day or two and my ankles are rigid, rather than

floppy. A few years ago I fell and broke my ankle because of that floppiness

which I never have now.

For balance I do the stationary jog and also get great benefit with hand and eye

coordination and leg strength, from jumping on a 40 " trampoline.

My balance isn't good enough to do it without a brace - so I have a small board

running acrpss an opening between our living room and dining room - through two

drawer handles to hold on to as I do the exercise.

At first I can only go a couple of minutes at a time but that improves rapadly

to where I can do 20 minutes at a time.

Best wishes.

Hansen

Re: Resistance exercise or weight training

Hi Lanman,

You know I am really active and a huge proponent of exercise with CMT.

The point about CMT - nothing is wrong with our muscles. Only our nerves have

problems, leading to muscle atrophy.

So in my opinion (and that of the doctors I am seeing) we should exercise to

protect the functioning of the muscles we do have.

There is evidence that muscles, once atrophy sets in, cannot be rebuilt. But

the critical mass is about 20% - if you have more than 20% of a muscle remaining

it can be built (this by the way is a layman's interpretation of the stuff that

has been explained to me in deeper more technical jargon by my docs). So as long

as you have something, it is worth using it and trying to strengthen it.

There is not a guarantee that this process will be successful or easy. I have

found it takes me a very long time to build muscle - I would say about 4x the

amount of time I think my friends have to get similar results. I also do things

slowly, with little time or effort added during each session. This is to prevent

too much strain.

Now, with the level of exercise I do, which is a lot, no one seems to think

that I am in danger of " overuse " which is commonly cited as a possible issue for

people with CMT. This too has varying views in the medical community - but here

to I think we can take a lesson regardless of different viewpoints. Doing too

much of anything quickly and for only a short period of time is not healthy. To

get the most out of exercise, strength and resistance training - especially with

nerves that do not work optimally - requires commitment, dedication, and for me

a slow build.

A good rule of thumb is to just start doing resistance work with your own body

weight. If you can get a theraband it is a great resistance tool that requires

no weight but your own. Then add about 10% extra (repetitions) a week. Then with

time you can add weights. I must admit after a year of consistent work I have

not increased my weights in about 6 months - I am just focused on listening to

my body and doing what feels right to get a workout and to maintain the

stability and strength that I have.

Good luck and feel free to email me at any time off list to discuss - happy to

share with you my own experiences and tips.

Donna from London

www.myfitnessyear.com

>

>

> Why do so many MD's make a point of saying we should not over exercise? I

know we need to save our energy, but as long as you don't exercise such that you

can't function the rest of the day why is it a problem?

>

> Also why do so many say we can't regain atrophied muscles? CMT only effects

a few muscles and most likely they can't be strengthened, but there's no reason

other can't even with moderately heavy exercise.

>

> I have discussed this with a few PT's and they say that as long as we don't

hurt the Peroneals that a CMT'er can build the surrounding and core muscles to

compensate for loss of strength from CMT. One said think of it a bit like a

stroke victim where other parts of the brain can learn to compensate for areas

lost. In my case with an ankle fused, the peroneals on that leg cannot be over

exerted.

>

[Guest guest]

Donna:

I agree -- muscles aren't diseased, only the nerves.

What the above statement doesn't take in account that as the enervation to a

muscle begins to pack it in, the number of muscle fiber enervated by the faulty

nerves receive no motor stimulus. Over time, the entire muscle may be affected

and essentially non-reactive.

This is a chicken-and-egg result. Without enervation, muscle fibers atrophy.

This atrophy is not a direct result of CMT, but the sequelae of the nerve

damage.

What I think CMTers need to be careful is not to overuse muscle fibers that have

compromised enervation as the level of enervation may not be robust enough to

return those fibers to their original compromised state. The issue complicated

as the sensory enervation may be compromised such that the over exertion may be

masked.

As a triathlete you are blessed with a muscularity that currently is not overly

compromised. When i was first diagnosed I thought I could just " work around and

through " any deficits that occur. What problem advised that I needed to re-think

my plans wasn't a motor issue, but a sensory.

I was a fox hunter and needed to to jump over 2.5'-4.0' obstacles. One day on a

hunt I realized I couldn't feel where my feet were in the stirrups. Without the

feedback I couldn't adjust my position prior to and after a jump. I realized

that that some things can't be " worked around " and " worked through " .

I take care in the exercise I take, and advise others to do the same.

Regards.

--Larry

[Guest guest]

It seems there is some controversy but most doctors recommend some or even

moderate to heavy exercise as long as we don't overdo the peroneal muscles since

they won't get proper nerve input to build.

Donna: I've read some of your Blogs, but wondering how much and what kind of

exercise you do on a regular basis. You say it takes 4X as long it seems 10X as

long for me, but maybe because I'm older

Four months ago I started with for 1/2 hour pool, 15 minutes stationary bike

and half hour floor/resistance exercise twice a week. That left me really beat.

Now I'm working up to 1.5 hours floor/resistance, 15 min floor/resistance, 15

min stationary bike 3 times a week and 1/2 hour bicycling daily as weather

permits. Part of My floor work is with a PT to improve my gait. My ankle was

fused 2/02 and didn't completely heal but the pain is managable.

> >

> >

> > Why do so many MD's make a point of saying we should not over exercise? I

know we need to save our energy, but as long as you don't exercise such that you

can't function the rest of the day why is it a problem?

> >

> > Also why do so many say we can't regain atrophied muscles? CMT only effects

a few muscles and most likely they can't be strengthened, but there's no reason

other can't even with moderately heavy exercise.

> >

> > I have discussed this with a few PT's and they say that as long as we don't

hurt the Peroneals that a CMT'er can build the surrounding and core muscles to

compensate for loss of strength from CMT. One said think of it a bit like a

stroke victim where other parts of the brain can learn to compensate for areas

lost. In my case with an ankle fused, the peroneals on that leg cannot be over

exerted.

> >

>

[Guest guest]

Hi Larry,

It is an interesting point you raise - that of sensory damage. Next time I see

the neurophysiotherapist I am working with I will ask her about that, and the

nerve / muscle / ennervation / sensory link.

One issue I often discuss with my physiotherapy team is the role of

re-innervation in the neuromuscular system. It is not as efficient, but it does

happen, thus enabling communication between nerves and muscles. In my layman

speak, this is why I think it takes me a very long time to build function and

strength relative to other athletes I know with " normal " physiology. Again,

it's just speculation and it is also just my experience, but I think with time,

patience and supervision we can try to keep muscles stimulated thus avoiding too

much atrophy - before it is too late to rebuild atrophied muscles.

I have seemingly more motor loss on my left side, and sensory loss on my right.

For further background, I do not use treadmills for running. I just can't seem

to get a good enough feel for the surface I am on. I suspect this is related to

sensory issues brought on by CMT. Your story about the impact of sensory loss

on your participation in fox hunting strikes home - how long will I be able to

run with notable sensory loss in my feet? I guess the uncertainty and

unpredictability of CMT are the things we all have to accept...

Hope you have a great day,

Donna from London

[Guest guest]

Hi Lanman,

Here is my week's training schedule, to give you an idea. I won't be doing all

of this, due to some stuff getting in the way. But I will tell you what I do /

don't do in the list.

Last year I did about 3-4 sessions max a week. Without as much structure. It

took me a long time to build to this level. I work with a coach so am able to

periodise - basically this means I get 3 weeks work, then 1 week recovery, and I

have builds before races, and after races. Right now I am in " recovery " mode,

so not as intense training, before I start the " base " mode again, working on

strength and endurance. These modes last months. Coaching and exercise - so

much science and study behind it! I am very lucky to work with good people on

my team, helping me out...

As for my daily training, I do log on the site Dailymile, where my profile can

be found at:

http://www.dailymile.com/people/donna_de

My current website is being redone. My new website, when launched, will show

more of my day to day training with the feed from Dailymile.

I think that even if it takes 10 times the amount of time to see progrress,

spending time and having patience is worth it. My fatigue levels have seemed to

decrease the more that I do. But that said - I feel zero compunction in

cancelling planned exercise if I feel tired. It is not worth the bad fatigue

cycle that can result.

Anyways, here is this week's schedule:

Monday - off (I do cooking for the week Monday nights!)

Tuesday - morning spin class (this week = anaerobic threshold) 55 minutes worth

of activity; evening swimming with my triathlon club 1 hour set, about 2400

yards or so (this week I was swimming 100 yards in 1min35sec)

Wednesday - morning bike set - I did not do this as I had insomnia/sore tummy on

Tuesday evening due to ingesting chlorine (peril of the swimming in a crowded

pool); evening yoga class - I did not do this due to a planned dinner /

discussion on charity fundraising ideas for 2011

Thursday - morning run set - I just got new orthotics so did not follow my

training plan of a 60 minute elliptical set but instead did 10 min outdoor run

to start the new orthotic breaking in process; evening plan is for strength and

conditioning so 15 types of exercises done in 3 sets with 5 min on the

elliptical before and after the sets - I may not do this but instead go to spin

class, it depends on what time I can leave work, and I hate the strength and

conditioning training so may find myself doing the elliptical if I miss spin as

it is more fun than strength work...

Friday - day off, but in the morning I have a sports therapy session planned

which includes a lot of active stretching, muscle release, and foot stretching

to try to keep them limber (I love my sports therapist he keeps me mobile)

Saturday - British Triathlon paratriathlon day, which includes 30 min track

warmup (I assume lunges, typical core work) and then 1 hour on the track (but I

am not sure what I will do on the track due to new orthotics - my plan would be

6 x 6 minute intervals at my goal pace for 2011 or 3 min 24 sec for 400 metres

so about 700 meters in 6 minutes); the day also includes about an hour and a

half in the pool but I am only able to do about 45 minutes due to the discussion

I have with the paratriathlon classifier, so I will be doing the drill specific

work (high elbows, good rotation, timing, etc) which is great as it is less

intense and something I enjoy spending time on.

Sunday - I am suppposed to do a long bike ride on Sunday - this plan will be

wholly dependent on how I feel post Saturday, and will depend a lot on the

weather and the fact that riding in central London is tough - I may be riding to

the gym and then a spin class and then home, or else going around the park about

a billion times... Or maybe not at all if I am too darn tired.

It looks like a lot at the moment, but it is actually quite mellow and easy. It

has taken me a year to build up to be comfortable with this schedule. And like

I said, I feel no worry if I cancel sessions. That is just the way things are,

life gets in the way and if I feel too tired I'd rather miss a set than get

burnt out.

Anyway, do not do this type of work without guidance from professionals and

doctors. My doctors make sure I am doing ok, I see physiotherapists, have email

contact with them, etc.

Good luck and feel free to email me off list if you want to talk more.

Donna

donna@...

[Guest guest]

That's still a pretty hefty schedule! I can't imagine I'll ever work up to that

ever, much less in a year. I can see an improvement after 4 months so will keep

at it!

I agree in not letting exercise get in the way of life. I sometimes skip when

there's something else going on, like right now I'm in Florida for a few weeks

so will ride my bike some but probably will do little or no workout sessions.

When I get home I'll have to step up the workouts because it will be too cold

for biking.

Thanks for filling me in and the offer to email you off list.

>

> Hi Lanman,

>

> Here is my week's training schedule, to give you an idea. I won't be doing

all of this, due to some stuff getting in the way. But I will tell you what I do

/ don't do in the list.

>

> Last year I did about 3-4 sessions max a week. Without as much structure. It

took me a long time to build to this level. I work with a coach so am able to

periodise - basically this means I get 3 weeks work, then 1 week recovery, and I

have builds before races, and after races. Right now I am in " recovery " mode,

so not as intense training, before I start the " base " mode again, working on

strength and endurance. These modes last months. Coaching and exercise - so

much science and study behind it! I am very lucky to work with good people on

my team, helping me out...

>

> As for my daily training, I do log on the site Dailymile, where my profile can

be found at:

>

> http://www.dailymile.com/people/donna_de

>

> My current website is being redone. My new website, when launched, will show

more of my day to day training with the feed from Dailymile.

>

> I think that even if it takes 10 times the amount of time to see progrress,

spending time and having patience is worth it. My fatigue levels have seemed to

decrease the more that I do. But that said - I feel zero compunction in

cancelling planned exercise if I feel tired. It is not worth the bad fatigue

cycle that can result.

>

> Anyways, here is this week's schedule:

>

> Monday - off (I do cooking for the week Monday nights!)

>

> Tuesday - morning spin class (this week = anaerobic threshold) 55 minutes

worth of activity; evening swimming with my triathlon club 1 hour set, about

2400 yards or so (this week I was swimming 100 yards in 1min35sec)

>

> Wednesday - morning bike set - I did not do this as I had insomnia/sore tummy

on Tuesday evening due to ingesting chlorine (peril of the swimming in a crowded

pool); evening yoga class - I did not do this due to a planned dinner /

discussion on charity fundraising ideas for 2011

>

> Thursday - morning run set - I just got new orthotics so did not follow my

training plan of a 60 minute elliptical set but instead did 10 min outdoor run

to start the new orthotic breaking in process; evening plan is for strength and

conditioning so 15 types of exercises done in 3 sets with 5 min on the

elliptical before and after the sets - I may not do this but instead go to spin

class, it depends on what time I can leave work, and I hate the strength and

conditioning training so may find myself doing the elliptical if I miss spin as

it is more fun than strength work...

>

> Friday - day off, but in the morning I have a sports therapy session planned

which includes a lot of active stretching, muscle release, and foot stretching

to try to keep them limber (I love my sports therapist he keeps me mobile)

>

> Saturday - British Triathlon paratriathlon day, which includes 30 min track

warmup (I assume lunges, typical core work) and then 1 hour on the track (but I

am not sure what I will do on the track due to new orthotics - my plan would be

6 x 6 minute intervals at my goal pace for 2011 or 3 min 24 sec for 400 metres

so about 700 meters in 6 minutes); the day also includes about an hour and a

half in the pool but I am only able to do about 45 minutes due to the discussion

I have with the paratriathlon classifier, so I will be doing the drill specific

work (high elbows, good rotation, timing, etc) which is great as it is less

intense and something I enjoy spending time on.

>

> Sunday - I am suppposed to do a long bike ride on Sunday - this plan will be

wholly dependent on how I feel post Saturday, and will depend a lot on the

weather and the fact that riding in central London is tough - I may be riding to

the gym and then a spin class and then home, or else going around the park about

a billion times... Or maybe not at all if I am too darn tired.

>

> It looks like a lot at the moment, but it is actually quite mellow and easy.

It has taken me a year to build up to be comfortable with this schedule. And

like I said, I feel no worry if I cancel sessions. That is just the way things

are, life gets in the way and if I feel too tired I'd rather miss a set than get

burnt out.

>

> Anyway, do not do this type of work without guidance from professionals and

doctors. My doctors make sure I am doing ok, I see physiotherapists, have email

contact with them, etc.

>

> Good luck and feel free to email me off list if you want to talk more.

>

> Donna

> donna@...

>

[Guest guest]

Hi Lanman,

I agree it's a hard schedule. But I enjoy it. My CMT is also relatively mild so

I have been able to build to this.

I think we all can start from where we are and then little by little do more and

things that are appropriate and work well for us. Gretchen does aqua, does

yoga. I like triathlon. I thinks it's great that we all can share regardless of

interests, impacts and abilities.

Enjoy Florida. I love it there - flat and perfect for riding!

Donna

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

I TRI because I CAN!

www.myfitnessyear.com

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

[Guest guest]

Although I agree generally with this statement, and I have come as long way, it

is sooo very easy to over do stuff, that we need to be extremely careful when

increasing any exercise. It is not always possible to move beyond a certain

point.

I know that sounds cynical, but I have overdone stuff, even internet

discussions, to the point of real physical difficulty.

Just something to keep in mind.

On Oct 17, 2010, at 6:54 AM, Donna D wrote:

>

> I think we all can start from where we are and then little by little do more

and things that are appropriate and work well for us. Gretchen does aqua,

does yoga. I like triathlon. I thinks it's great that we all can share

regardless of interests, impacts and abilities.

[Guest guest]

Hi ,

Pardon me for agreeing with you - I *do* think your response sounds cynical!

Sensible advice, no matter what level you start from, is to never add more than

10% to your activity week by week. Only the individual can then assess, with

their doctors or physiotherapists, what impact added activity is having.

So - as an extreme example - if you start from a ten second base 3 times a week

then it will take about a half a year to get to 1 minute 3 times a week!

Although this is extreme, my point is that it can take a long time to build up

activity levels.

With patience, good doctor's supervision, and consistency, I think it is

possible to add activity appropriate to our level of impairment - and to

redefine our limitations accordingly

Good luck with your yoga - I have recently adding this back to my week and find

it very beneficial - and difficult as it works on core strength and stability!

Donna from London

>

I know that sounds cynical...