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I've done both, especially horseback riding. I didn't know it was helping

with balance I just did it because I enjoyed it.

----Original Message-----

From: Gretchen Glick

Sent: Thursday, December 30, 1999 11:34 AM

To: CMTUS

Subject: balance question

Has anyone done either horsebackriding or trampoline to help with

balance? If so, how did that go?

Gretchen

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  • 4 months later...
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I would imagine our brain has one hell of job trying adjust it gyroscope to

compensate the bodies balance system to compensate for the abnormalties of

the feet. One of the test Neuro surgeons would give me is put my two feet

together, close my eyes and stretch both arms out sideways, then bend my arm

from the elbow in and touch the end of my nose. I would always hit it on the

button. So I see my balance problem coming from my feet. Although somewhere

along the line I heard of standing & rocking on a rocker board (type of

platform) to augment the skills of balance. Probable a type of repatterning.

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I would imagine our brain has one hell of job trying adjust it gyroscope to

compensate the bodies balance system to compensate for the abnormalties of

the feet. One of the test Neuro surgeons would give me is put my two feet

together, close my eyes and stretch both arms out sideways, then bend my arm

from the elbow in and touch the end of my nose. I would always hit it on the

button. So I see my balance problem coming from my feet. Although somewhere

along the line I heard of standing & rocking on a rocker board (type of

platform) to augment the skills of balance. Probable a type of repatterning.

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I would imagine our brain has one hell of job trying adjust it gyroscope to

compensate the bodies balance system to compensate for the abnormalties of

the feet. One of the test Neuro surgeons would give me is put my two feet

together, close my eyes and stretch both arms out sideways, then bend my arm

from the elbow in and touch the end of my nose. I would always hit it on the

button. So I see my balance problem coming from my feet. Although somewhere

along the line I heard of standing & rocking on a rocker board (type of

platform) to augment the skills of balance. Probable a type of repatterning.

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In a message dated 5/2/2000 6:12:15 PM Pacific Daylight Time,

liliwigg@... writes:

<< Becky, Kat, anyone else - do you know if the CMT 'balance problem' has

anything to do with the 'inner ear' like other balance problems. Or, is

ours directly related to proprioception or tripping? Has anyone come up

with anything that helps balance - I know about physical therapy and

some exercises, but just wondering if anything is new in this regard.

Does anyone have anything positive they do that seems to help balance? I

am well aware of watching where I am going, going slow and pacing

myself, just wondering if there's more. Thanks for the help.

Gretchen >>

The chriopractor helps me with balance.

jenny

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In a message dated 5/2/2000 6:12:15 PM Pacific Daylight Time,

liliwigg@... writes:

<< Becky, Kat, anyone else - do you know if the CMT 'balance problem' has

anything to do with the 'inner ear' like other balance problems. Or, is

ours directly related to proprioception or tripping? Has anyone come up

with anything that helps balance - I know about physical therapy and

some exercises, but just wondering if anything is new in this regard.

Does anyone have anything positive they do that seems to help balance? I

am well aware of watching where I am going, going slow and pacing

myself, just wondering if there's more. Thanks for the help.

Gretchen >>

The chriopractor helps me with balance.

jenny

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In a message dated 5/2/00 8:12:14 PM Central Daylight Time, liliwigg@...

writes:

<< Does anyone have anything positive they do that seems to help balance? I >>

Hi Gretchen & CMT Listers:

Yes, I have a serious balance problem. partly because I have abn inner ear

problem. It seems better now, but about 10 yrs ago, I had vertigo so bad that

I could not get out of bed for stretches of 3/4 days.In fact I would not even

turn over without the worst nausea & vomiting. It would GRADUALLY get better

until the next spell.

I think this was not caused by CMT, but it made the CMT problem more

pronounced because I can not coordinate my movements to help my balance. The

vertigo is not so bad now, but the balance problem is still there.

CMTer Bud in TX

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Hi Gretchen, Peggie here..... when I lost all of my muscles from the knees

down and over 50% of muscle above the knee, I had no balance as I had no

muscle to balance with! So, I had to learn to walk again, build up dormat

muscles in my thighs (that weren't affected), and learn to balance

myself..... without any lower leg or feet muscle. Needless to say, I don't

have much balance. My loss of balance had nothing to do with inner ear

problems. Just no muscle to help balance the body....

balance question

> Becky, Kat, anyone else - do you know if the CMT 'balance problem' has

> anything to do with the 'inner ear' like other balance problems. Or, is

> ours directly related to proprioception or tripping? Has anyone come up

> with anything that helps balance - I know about physical therapy and

> some exercises, but just wondering if anything is new in this regard.

> Does anyone have anything positive they do that seems to help balance? I

> am well aware of watching where I am going, going slow and pacing

> myself, just wondering if there's more. Thanks for the help.

>

> Gretchen

>

> ------------------------------------------------------------------------

> Life's too short to send boring email. Let SuperSig come to the rescue.

> http://click.egroups.com/1/3805/7/_/616793/_/957316230/

> ------------------------------------------------------------------------

>

>

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Hi Gretchen, Peggie here..... when I lost all of my muscles from the knees

down and over 50% of muscle above the knee, I had no balance as I had no

muscle to balance with! So, I had to learn to walk again, build up dormat

muscles in my thighs (that weren't affected), and learn to balance

myself..... without any lower leg or feet muscle. Needless to say, I don't

have much balance. My loss of balance had nothing to do with inner ear

problems. Just no muscle to help balance the body....

balance question

> Becky, Kat, anyone else - do you know if the CMT 'balance problem' has

> anything to do with the 'inner ear' like other balance problems. Or, is

> ours directly related to proprioception or tripping? Has anyone come up

> with anything that helps balance - I know about physical therapy and

> some exercises, but just wondering if anything is new in this regard.

> Does anyone have anything positive they do that seems to help balance? I

> am well aware of watching where I am going, going slow and pacing

> myself, just wondering if there's more. Thanks for the help.

>

> Gretchen

>

> ------------------------------------------------------------------------

> Life's too short to send boring email. Let SuperSig come to the rescue.

> http://click.egroups.com/1/3805/7/_/616793/_/957316230/

> ------------------------------------------------------------------------

>

>

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In a message dated 5/2/2000 9:36:50 PM US Eastern Standard Time,

bhmont@... writes:

<< Does anyone have anything positive they do that seems to help balance? I

>>

Hi Gretchen & CMT Listers: >>

A bid dread>>>> to STAND around and talk.....lol If my sweetie isn't around

to hold onto, I look for a wall or piece of furniture. I have to keep my feet

moving because of balance. I often wanted to just walk in a circle around the

person that I'm talking to, but I don't think that would make a good

impression.......lol I use my sense of humor with my CMT to help with

embarrassment. Like if I trip, I say " first day with my new feet " This helps

to make others more comfortable too in an awkward situation. My daughter also

has CMT and if one of us falls and the other is around. The one still

standing stretches out arms and says " TA DA " ...as if it wear a planned

performance ....lol For Me laughter always relieves the frustration and

helps me to be IN CONTROL and not the CMT.......

........ :)

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In a message dated 5/3/00 6:53:04 AM Central Daylight Time, flyingk@...

writes:

<< to STAND around and talk. >>

:

Bud in TX here--- I can identify with you. I always try to get away from the

crowd when church is over because I cannot STAND around & visit. A bit

antisocial I guess, but I can't function in a sea of moving humanity. It

isn't always easy to find a wall to steady myself.

Thanks for your time this time,

CMTer Bud in TX

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<< It isn't always easy to find a wall to steady myself. >>

I'm with you there. A wall, table, chair back, --- Something!!!! Anything!!!

My balance is deteriorating regardless of what I do. Until about a year ago I

used to rescue worms after a rain, but I no longer risk doing that. I have

the feeling I will tip all the way over if I lean over, so I don't. I have

simple balance exercises, but they are getting harder to do and they are NOT

improving my balance anyway. I bought my nice German walking stick to use at

the zoo to cut down my risk of falling there. I haven't fallen yet, anywhere,

and I dread the thought of doing it! I know falling is a frequent event for

some CMTers, sad to say. I'm glad some of you can do it with grace and humor.

I guess I need to train my hubby to do the Ta dah!!! routine, just in case.

He would enjoy receiving the attention instead of me.

There may be some CMTers who are helped by various exercises or whatever, but

I'm not one of them. What age a person is may make some difference, but most

CMTers, even 20-30 year-olds, are way ahead of me with symptoms so I wonder.

My mom didn't fall until she was in her 70s.

Kat in Seattle

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Hi from Jill in California,

I have a lot of trouble with my balance - roller skating and bike

riding are activities that I can only dream about. There is something I

have discovered recently that helps me a great deal with balance - it is an

amino acid called tryptophan. I originally took it to help me relax at

night and it worked so well that I began to take it when I was nervous or

stressed out (usually over driving when I lived in LA). Then I noticed that

it improves my balance! My doctor told me that there is no harm in taking

as much as I want because it is a completely natural substance (found in

turkey and other foods). The only trouble is that it gets expensive and is

often hard to find so when I do find it - I buy in bulk!

Jill

> ----------

> From: Gretchen Glick

> Reply To: CMTUS (AT) e

> Sent: Tuesday, May 2, 2000 6:04 PM

> To: CMTUS

> Subject: balance question

>

> Becky, Kat, anyone else - do you know if the CMT 'balance problem' has

> anything to do with the 'inner ear' like other balance problems. Or, is

> ours directly related to proprioception or tripping? Has anyone come up

> with anything that helps balance - I know about physical therapy and

> some exercises, but just wondering if anything is new in this regard.

> Does anyone have anything positive they do that seems to help balance? I

> am well aware of watching where I am going, going slow and pacing

> myself, just wondering if there's more. Thanks for the help.

>

> Gretchen

>

> ------------------------------------------------------------------------

> Life's too short to send boring email. Let SuperSig come to the rescue.

> http://click.egroups.com/1/3805/7/_/616793/_/957316230/

> ------------------------------------------------------------------------

>

>

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In a message dated 03/05/00 04:53:17 a.m. Pacific Daylight Time,

flyingk@... writes:

<< A bid dread>>>> to STAND around and talk.....lol If my sweetie isn't

around

to hold onto, I look for a wall or piece of furniture. I have to keep my

feet

moving because of balance. I often wanted to just walk in a circle around

the

person that I'm talking to, but I don't think that would make a good

impression.......lol I use my sense of humor with my CMT to help with

embarrassment. Like if I trip, I say " first day with my new feet " This

helps

to make others more comfortable too in an awkward situation. My daughter

also

has CMT and if one of us falls and the other is around. The one still

standing stretches out arms and says " TA DA " ...as if it wear a planned

performance ....lol For Me laughter always relieves the frustration and

helps me to be IN CONTROL and not the CMT.......

........ :)

>>

Funny that I do the samething. We all must do the same stuff to keep are

balance. I wonder what else we do a like?

jenny

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In a message dated 03/05/00 08:46:32 a.m. Pacific Daylight Time,

jilld@... writes:

<< Hi from Jill in California,

I have a lot of trouble with my balance - roller skating and bike

riding are activities that I can only dream about. There is something I

have discovered recently that helps me a great deal with balance - it is an

amino acid called tryptophan. I originally took it to help me relax at

night and it worked so well that I began to take it when I was nervous or

stressed out (usually over driving when I lived in LA). Then I noticed that

it improves my balance! My doctor told me that there is no harm in taking

as much as I want because it is a completely natural substance (found in

turkey and other foods). The only trouble is that it gets expensive and is

often hard to find so when I do find it - I buy in bulk!

Jill >>

Jill where in Ca are you?

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In a message dated 03/05/00 10:37:25 a.m. Pacific Daylight Time,

wolfhybrid2000@... writes:

<< My balance is deteriorating regardless of what I do.

> Until about a year ago I

> used to rescue worms after a rain, but I no longer

> risk doing that. I have

> the feeling I will tip all the way over if I lean

> over, so I don't. >>

Lean on a broom or something tall to bend over or just sweep the worms back

into the grass.

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In a message dated 03/05/00 10:37:25 a.m. Pacific Daylight Time,

wolfhybrid2000@... writes:

<< My balance is deteriorating regardless of what I do.

> Until about a year ago I

> used to rescue worms after a rain, but I no longer

> risk doing that. I have

> the feeling I will tip all the way over if I lean

> over, so I don't. >>

Lean on a broom or something tall to bend over or just sweep the worms back

into the grass.

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In a message dated 03/05/00 10:37:25 a.m. Pacific Daylight Time,

wolfhybrid2000@... writes:

<< My balance is deteriorating regardless of what I do.

> Until about a year ago I

> used to rescue worms after a rain, but I no longer

> risk doing that. I have

> the feeling I will tip all the way over if I lean

> over, so I don't. >>

Lean on a broom or something tall to bend over or just sweep the worms back

into the grass.

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<< kat- since you got that new nifty walking stick- use that to knock those

poor

worms back into the dirt >>

There is something about squishing some creature I'm trying to rescue that

sort of makes me hesitate. LOL

I may try it with some larger worms, if we have more rain. I may have to wait

till fall to get enough to make the wiggly things come out. We are about into

our dry season.

We'll see!

Kat

>^,^<

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<< kat- since you got that new nifty walking stick- use that to knock those

poor

worms back into the dirt >>

There is something about squishing some creature I'm trying to rescue that

sort of makes me hesitate. LOL

I may try it with some larger worms, if we have more rain. I may have to wait

till fall to get enough to make the wiggly things come out. We are about into

our dry season.

We'll see!

Kat

>^,^<

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<< kat- since you got that new nifty walking stick- use that to knock those

poor

worms back into the dirt >>

There is something about squishing some creature I'm trying to rescue that

sort of makes me hesitate. LOL

I may try it with some larger worms, if we have more rain. I may have to wait

till fall to get enough to make the wiggly things come out. We are about into

our dry season.

We'll see!

Kat

>^,^<

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Pertaining to balance:

I have to see where my feet are landing in order to balance myself.... The

feeling in my feet is not the best and I need to know ahead of time if it is

level or bumpy in order to balance myself.... If it's bumpy I have to

prepare my knees for the possibility.

I hope this makes since.

Jeanie

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