Balance

[Guest guest]

Ed:

I'm doubly blessed with balance issues -- CMT and Meniere's.

The easiest balance aid to try is to take every step by landing first on the

heel of your foot and rolling forward onto your toes. This movement stabilizes

your ankle and (usually) aligns the the knee over the foot in a balanced

position.

I recommend skipping using a cane and using a forearm crutch instead. With a

cane your balance is maintained between your wrist and floor through the cane.

This puts strain on your wrist as you make fine adjustments throughout gait.

Holding a cane ties up your hand which I found to be a real burden.

The forearm crutch is more stable as balance is maintained by the rigidity of

the forearm. Fine adjustments to balance is maintained by the apposition between

the wrist, forearm and the crutch tubing. You also have a hand free when you

need it, and by pivoting the crutch cuff upward, the crutch becomes a great prop

while waiting in line, for a bus, etc.

The world would be a wonderful place is everything existed in a straight line

and downhill. In both directions.

As it isn't I will pass on the advice of a neurosurgeon gave me very early in my

CMT experience(I was 55). I balked at getting an AFO and he asked, " Would you

like to trip over a blade of grass and break your hip? "

That question was easily answered.

Now come the boring part of most of my posts (Groans heard throughout the

group!): See a physiatrist/rehabilitation doctor and use him/her as your primary

physician for living with CMT. All they care about is finding ways to make your

life better, and not get hung up on the pathology of the disease.

Don't get overtired -- your legs and feet can't respond quickly when they are

fatigued. I'm good for about 4 hours of moderate exercise every day. If I go

longer that 4 hours, I take the next day off.

I found this the hardest part of CMT to accept. I have almost succeeded in

accepting it, but not quite yet!

Regards.

--Larry

[Guest guest]

i am so frustrated. i tell my partner about my balance issues and how i was made

fun of as a kid and all that went with it;   why does he not get my problem with

balance is not my fault. i try to read to him about all our issues and i still

feel it is my fault.

francine

 

[Guest guest]

francine,

i know what you mean, i have no balance at all. sometimes i dont think people

know what it is like to not have balance or other things that we have. like may

foot flaps down and i walk really really heavy, so my husband always say things

about my making noise when i walk. you just have to try to go about on your own.

do your own things.

tina

cmt1a

michigan

From: naturefrancine@...

Date: Thu, 30 Jul 2009 21:35:30 -0700

Subject: Re: Balance

i am so frustrated. i tell my partner about my balance issues and how i was made

fun of as a kid and all that went with it; why does he not get my problem with

balance is not my fault. i try to read to him about all our issues and i still

feel it is my fault.

francine

[Guest guest]

I found the MBT shoes to help do away with the heavy flap. They have rocker

bottoms.

Colin

[Guest guest]

Francine,

Be strong and don't put up with people that don't understand your

disability. Its not your fault don't let them put you down and make you feel

less the they are. You will look back on your life for being the one that ahs

been dumped on and be very sorry you let people do that to you.Where is their

compassion?

Geri

francine,

i know what you mean, i have no balance at all. sometimes i dont think

people know what it is like to not have balance or other things that we

have. like may foot flaps down and i walk really really heavy, so my husband

always say things about my making noise when i walk. you just have to try to

go about on your own. do your own things.

tina

cmt1a

michigan

From: naturefrancine@...

Date: Thu, 30 Jul 2009 21:35:30 -0700

Subject: Re: Balance

i am so frustrated. i tell my partner about my balance issues and how i was

made fun of as a kid and all that went with it; why does he not get my

problem with balance is not my fault. i try to read to him about all our

issues and i still feel it is my fault.

francine

[Guest guest]

Thank you everyone for answering my question about canes and Balance.  I am 61

and use a cane mainly for balance, so I can stand and talk to someone without a

wall nearby to hold onto.  I still work fulltime and wear only one AFO on the

left foot, but the balance sure isn't there.  Again thanks everyone. 

Elaine 

[Guest guest]

Hi Elaine –

Thanks for asking the question. I'm 59 and when my neurologist diagnosed me

with CMT a year ago at s Hopkins he strongly suggested I get a cane for

balance, especially when I am out of the house in public. I did and it has

helped immensely. He told me that people see me coming they would " part like

the Red Sea. " He was right.

At the stores I park close to the basket returns and use a cart as my cane (even

if all I get is a loaf of bread). I can get around without a cane but I have to

take my time and really focus on a spot in the direction that I am walking. I

am finding that walking without the cane can be very dangerous though. I have

had drivers in vehicles blow their horns and/or shout obscenities at me for

going slow or not turning to nod or acknowledge that they stopped for me in a

crosswalk. The least little distraction will send me and my balance

reeling…someone calling me, a horn blowing, etc.

Over this year my sense of balance has worsened…especially at home where I don't

use my cane. That is most likely going to change soon. I fell in my home two

months ago and broke my wrist pretty badly. I had used the TV remote in my

living room to turn off the my TV and home stereo system without thinking that

when I did so there would be no light in my living room when all of the units of

the home theater systems shut down. It became pitch dark where I was and I was

disoriented and fell.

Now I have night lights everywhere, grab bars in the bathrooms, and railings on

both sides of all staircases, and I've ordered another cane that I will use in

the house.

Have a Happy Holiday to All at !

-Wheels

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[Guest guest]

Hi wheels:)

Thank You for the response.  Can I ask what kind of a cane do you use?And can I

email you also with other questions?

Thanks

Elaine

>

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[Guest guest]

Hi Elaine,

I am 6Ft.,a male, and use a cane from a company called

http://www.fashionablecanes.com/. You should choose a cane based on the

severity of your condition.

Please feel free to email me with other questions. I' m no expert, but I will

tell you what works or doesn't work for me.

The real experts are on . Please continue to tune in.

-wheels (Clyde)

>

[Guest guest]

Elaine,

Perhaps you could give yoga a try. I have achieved massive increases in balance

and coordination and strength and proprioception, as well as losing 35 pounds.

Until the past year, or since I started yoga, I fell fairly often. I hardly fall

at all anymore, and I do not have to look at each of my footfalls so that even a

slightly uneven service does not throw me out of balance.

I hope that helps,

[Guest guest]

 

Balance is so very important for people on the spiritual path. Many people I have observed on the path focus so intently on spiritual growth that they ignore the needs of their bodies; experience out of control emotions; and operate from the ego mind. We are here to ground the energy of Spirit into our body, emotions and mind as well as to evolve the soul.

  Each of the four energetic bodies (physical, emotional, mental and spiritual)  is like the leg of a chair; it is great to grow one leg but if you don't grow all of them roughly at the same time, your seat gets awfully wobbly and eventually collapses. If you want to focus on one thing, focus on love for love heals the body, soothes the emotions, slows down the mind and advances the soul. The path I prefer is to heal the body, then work with emotions, then the mind and then the soul and then back to the body to repeat the cycle all over again. This way I feel I grow in an ever-expanding spiral like a nautilus.

 

 

" I AM grounded, balanced, calm and centered at all times. I feel great. I stay

centered and calm no matter what is going on around me. "

 

[Guest guest]

I've had a total of 4 implant surgeries on my ears. The first 3 did not

have any complications, but the last one did leave me with severe balance

problems afterward. The surgeon said it would gradually get better, and

so far, that's been true. My balance is mostly back to normal 10 months

later, but when I'm especially tired, I still get wobbly, which didn't

happen before that last surgery.

So I still don't know if it will completely go away.

Ken

--

Chaos will ensue if the variable i is altered...

- SysV Programmers Guide

On Sun, 14 Nov 2010, neilmcorby wrote:

> Hi

> I am still having problems with my balance, particularly in the morning

> and evening, I am 9 weeks post op now, has anyone else experienced this

> problem and if so how long did it take to rectify itself.

>

> Cheers

> Neil

>

>

[Guest guest]

Hi - I've also had multiple CI implant sugeries and I know you and I are not

alone with this problem. Balance has been a challenge for me since my first

surgery but if you weigh the option of ability to hear vs. no hearing - dealing

with the balance problem becomes less of an issue. I can recommend a couple of

things but first I would recommend that you make sure that your sugar readings

are not high because I find that balance can be worsened by readings that are

not in the normal range.

What might help:

Do not watch something passing you - for instance - a car going by you. Walking

faster (carefully) - rather than slower seems to help me and even if someone

wants to give me their arm to walk - if they go slow (which most people tend to

do) I find it harder to feel balanced. I personally also prefer to walk closer

to the wall rather than in the middle of the room. Don't find yourself in a

large area (say the middle of a field) without something to hold on to which

makes you feel more balanced. If you are a caffeine drinker - lower the intake

and see if that helps. Another culprit is high sodium (salt) intake. Ask your

doctor to help you find a good balance therapist and go. Follow the

instructions completely.

I was told that each time we undergo the surgery - there is drilling. This

drilling can leave you with a balance issue. It makes sense I guess and I know

it would be nicer without it. Hopefully, this will soon pass for you.

Here is a good link from the NIH -

http://nihseniorhealth.gov/balanceproblems/printerFriendly.html?allTopics=entire\

Topic & images=Include+images & print=Confirm+print+selection

MOST OF ALL - Before you do any of this - Talk to your doctor. The doctor is

your best resource. I have offered suggestions but I am not a doctor. Always -

the doctor's opinion comes first.

Good Luck!

Alice

http://www..net

[Guest guest]

I hope this is not too obvious, but why 4 surgeries? I know we all (usually)

have two ears, so it begs the question of why repeat surgeries? I have heard of

where the electrodes did not unfurl correctly and it required another surgery.

Neely in Dallas Texas

>

>

> I've had a total of 4 implant surgeries on my ears. The first 3 did not

> have any complications, but the last one did leave me with severe balance

> problems afterward. The surgeon said it would gradually get better, and

> so far, that's been true. My balance is mostly back to normal 10 months

> later, but when I'm especially tired, I still get wobbly, which didn't happen

before that last surgery.

>

> So I still don't know if it will completely go away.

>

> Ken

<<snipped>>

[Guest guest]

Heh.

1) 1988 - implanted Ineraid 100, an early experimental model that never got FDA

approval, in my right ear

2) 2000 - removed that implant, since I hadn't been using it for 6 years

3) 2009 - implanted AB Harmony in my left ear

4) 2010 - implanted AB Harmony in my right ear

So 1 surgery on my left, 3 on my right. The 4th surgery was the hardest, as

surgery #2 left behind a wire in my cochlea that triggered bone growth, so the

surgeon wasn't able to insert the implant array all the way and I only got 9-10

functioning electrodes on that side. That extra difficulty is what caused

my balance problems the last time, I assume.

Ken

--

Chaos will ensue if the variable i is altered...

- SysV Programmers Guide

On Mon, 15 Nov 2010, rsneely wrote:

> I hope this is not too obvious, but why 4 surgeries? I know we all (usually)

> have two ears, so it begs the question of why repeat surgeries? I have heard

> of where the electrodes did not unfurl correctly and it required another

> surgery.

>

> Neely in Dallas Texas

>

>

>>

>>

>> I've had a total of 4 implant surgeries on my ears. The first 3 did not

>> have any complications, but the last one did leave me with severe balance

>> problems afterward. The surgeon said it would gradually get better, and

>> so far, that's been true. My balance is mostly back to normal 10 months

>> later, but when I'm especially tired, I still get wobbly, which didn't

>> happen before that last surgery.

>>

>> So I still don't know if it will completely go away.

>>

>> Ken

> <<snipped>>

>

>

[Guest guest]

Many people have multiple CI surgeries for lots of different reasons. Sometimes

things just happen.

Alice

http://www..net

> >

> >

> > I've had a total of 4 implant surgeries on my ears. The first 3 did not

> > have any complications, but the last one did leave me with severe balance

> > problems afterward. The surgeon said it would gradually get better, and

> > so far, that's been true. My balance is mostly back to normal 10 months

> > later, but when I'm especially tired, I still get wobbly, which didn't

happen before that last surgery.

> >

> > So I still don't know if it will completely go away.

> >

> > Ken

> <<snipped>>

>

[Guest guest]

Hi Joana,

So I guess you are back in Brazil now?

There ARE some exercises and movements to help with balance, you're best bet

would be to talk with a physical therapist about this. Below is an abstract from

2006 FYI. What I don't know is how far this type of balance training has gone -

whether it stayed 'on the continent', came to the US or is being used in Asia.

Enrolling in a Tai Chi, Pilates or Yoga class may also be an idea.Just watch and

do what you can. There are chair exercises to help balance, also aquatic

exercise has balance components to it.

Take a look at this http://www.mayoclinic.com/health/balance-exercises/SM00049

These may be too advanced, but I'm sure your PT can help you with something

similiar.http://www.physioadvisor.com.au/7667850/balance-exercises-improve-balan\

ce-physioadviso.htm That wobble board is what I use in the pool.

Gretchen

Balance Training for HMSN

Disabil Rehabil. 2006 Dec 15;28(23):1455-9.

Effects of dynamic balance training during standing and stepping in patients

with hereditary sensory motor neuropathy.

Matjaci & #263; Z, Zupan A.

Institute for Rehabilitation, Republic of Slovenia.

PURPOSE: To quantitatively evaluate the effects of dynamic balance training in

patients with hereditary sensory motor neuropathy (HSMN).

METHODS: Sixteen patients with HSMN were randomly assigned to either an

experimental or control group. The intervention session consisted of passive

stretching, muscle strengthening and dynamic balance training during standing

and stepping, which differed in that the experimental group used commercially

available balance training mechanical apparatus while the patients from the

control group were physically managed by a physiotherapist. The intervention

period was 12 days. Balance and mobility functions were assessed by means of

Berg Balance Scale, Up & go test and 10-m walk test before and after the

intervention period.

RESULTS: The within-group comparison (1-way repeated measures ANOVA) for the

experimental group showed statistically significant improvement (p < 0.05) in

Berg Balance Scale, Up & go test and 10-m walk test, while within-group comparison

for the control group showed statistically significant improvement only in Berg

Balance Scale (p < 0.05). The between-group comparison (2-way ANOVA) showed

larger improvement in the experimental group, however, these differences were

not statistically significant.

CONCLUSION: Dynamic balance training is useful training modality for patients

with HSMN. When exercised in the balance training mechanical apparatus used in

this study enables efficient balance and mobility training without requiring

physical assistance from a physiotherapist or a caregiver, which opens new

possibilities for continuing and more frequent physical exercise and mobility

training of patients with HSMN also at their homes.