Re: Treadmill, Stretching + Proprioceptive Exercise Rehabilitation Program for CMT 1

[Guest guest]

Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercising. I personally have tried the treadmill and my feet

and knees cannot tolerate it.

Diane Gracely

[Guest guest]

I have CMT 1A; my legs don't work below the knee. Without AFOs, I had

trouble walking even a few blocks. Within two weeks of getting AFOs, I was

able to walk 3 miles on a treadmill at a pace of 2-3 MPH. I got blisters at

first, but over time my skin adjusted.

Everyone's circumstances are different, but it does seem that we're all

capable of doing more than we think we can.

I've always been skeptical of the oft-repeated idea that people with CMT

shouldn't exercise. When I was a teenager I got into weightlifting, and

found that I gained strength in my unaffected muscles just fine. At age 20,

a prominent figure in the CMT community warned me that I'd be sorry if I

kept it up; " You'll come crying to me when you're 30. " I turn 36 in a

couple of weeks, and I'm still doing well. I accept that I may be incurring

some risk by working out, but for me the benefits I've experienced outweigh

that risk.

On Feb 22, 2011 12:23 PM, " Diane Gracely " <diane@...> wrote:

> Now this kind of testing amazes me, HOW do they think people with CMT1A

are going to be able to even stand walking on a treadmill? My doctors have

told me NO weight bearing exercising . I personally have tried the treadmill

and my feet and knees cannot tolerate it.

>

> Diane Gracely

>

>

[Guest guest]

I have achieved great increases in proprioceptive ability, balance, strength,

and coordination by the use of stretching, which pretty much sums up yoga, and

almost entirely without leaving the floor.

Recently we have begun gait-corrective exercises, and I am now walking with an

unbraced right shoe after 16 years of needing support.

I am now able to control feet and ankles in eversion and inversion, and full

ranged dorsiflexion with strength and control unknown to me until the past 18

months.

My ankle and foot musculature will now support and correct for stumbles or

non-surefootedness, which would have brought me to the ground, usually with

injury, until very recently.

Diaphragm strengthening and stretching have given me back and abdominal muscles

which are exceptionally strong, and I have leaned to sit, stand, bend, and squat

appropriately...

Until we attacked the problem, when sitting, I could start thew action, but,

about mid-way down to the seat, whatever seat that was, I found I had NO

control... which made it appear as if I was jumping onto the couch when sitting

down.

Now, after appropriately being shown and told at the same time how to perform

the maneuver, I can now sit down appropriately, like someone without CMT, and

stand up again without the use of inertia or the assistance of a push or pull

off from some object.

I can now bend and squat appropriately as well.

The benefits of stretching and proprioceptive work will be enormous. My doctor,

after seeing this month the new gait without orthotic assistance, suggested that

my yoga trainer and I present this transformation.

This was very, very validating.

On Feb 22, 2011, at 11:47 AM, Diane Gracely wrote:

> Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercisingˇ. I personally have tried the treadmill and my

feet and knees cannot tolerate it.

>

> Diane Gracely

>

>

[Guest guest]

Hi Diane,

OK, while I don't have CMT 1A, nonetheless all of my physicians (and yes they

know I have CMT) encourage treadmill, stretching and proprioceptive exercise

with resistance. All of this I do in water, as well as some land based work.

Biking and horsebacking seasonally too (outside on clear days but that's more

fun than 'exercise') and I am still walking in sand like my doc said to do after

foot surgery in '66.

My docs concur that whatever keeps me up and moving and on my feet is what's

right for me. And all that's weight bearing. Only time I was no weight bearing

was after the foot surgery for 2 weeks, and even after back surgery in 2002, I

was up and walking (weight bearing) the next day.

We are all different, whether it's all those with CMT 1A or CMT 2 or CMT X or

all the subtypes too.

If I remember you were going to look into a pool? Whatever happened with that?

Pool exercising is very kind to knees and other joints. As for feet in the pool,

I wear shoes (old, clean pair of New Balances)

Talk soon,

Gretchen

>

> Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercising. I personally have tried the treadmill and my feet

and knees cannot tolerate it.

>

> Diane Gracely

>

>

[Guest guest]

Hi Gretchen,

My pool idea is not coming through because of financial reasons.

No money for a pool. What we want costs $13,000.

We joined the local gym. We started going 3 times a week. I weigh almost 300 lbs

so maybe that is why my doctors have said no weight bearing exercise???? Not

sure. I am really working at weight loss. 8 years ago I was a size 8.

Diane Gracely

> >

> > Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercising. I personally have tried the treadmill and my feet

and knees cannot tolerate it.

> >

> > Diane Gracely

> >

> >

[Guest guest]

sounds great, ! congratulations. Where do you live, may I ask ....was it a

clinic in a major city that you worked with?

Sam

>

> > Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercisingˇ. I personally have tried the treadmill and my

feet and knees cannot tolerate it.

> >

> > Diane Gracely

> >

> >

[Guest guest]

,

This is amazing results. Thanks for sharing

Jackie

Re: Treadmill, Stretching + Proprioceptive Exercise

Rehabilitation Program for CMT 1

 

I have achieved great increases in proprioceptive ability, balance, strength,

and coordination by the use of stretching, which pretty much sums up yoga, and

almost entirely without leaving the floor.

Recently we have begun gait-corrective exercises, and I am now walking with an

unbraced right shoe after 16 years of needing support.

I am now able to control feet and ankles in eversion and inversion, and full

ranged dorsiflexion with strength and control unknown to me until the past 18

months.

My ankle and foot musculature will now support and correct for stumbles or

non-surefootedness, which would have brought me to the ground, usually with

injury, until very recently.

Diaphragm strengthening and stretching have given me back and abdominal muscles

which are exceptionally strong, and I have leaned to sit, stand, bend, and squat

appropriately...

Until we attacked the problem, when sitting, I could start thew action, but,

about mid-way down to the seat, whatever seat that was, I found I had NO

control... which made it appear as if I was jumping onto the couch when sitting

down.

Now, after appropriately being shown and told at the same time how to perform

the maneuver, I can now sit down appropriately, like someone without CMT, and

stand up again without the use of inertia or the assistance of a push or pull

off from some object.

I can now bend and squat appropriately as well.

The benefits of stretching and proprioceptive work will be enormous. My doctor,

after seeing this month the new gait without orthotic assistance, suggested that

my yoga trainer and I present this transformation.

This was very, very validating.

On Feb 22, 2011, at 11:47 AM, Diane Gracely wrote:

> Now this kind of testing amazes me, HOW do they think people with CMT1A are

going to be able to even stand walking on a treadmill? My doctors have told me

NO weight bearing exercisingˇ. I personally have tried the treadmill and my

feet and knees cannot tolerate it.

>

> Diane Gracely

>

>