Re: Can Balance Be Regained....How?

March 19, 2010

Regarding balance, my sensory nerves are shot and I find balance to be a major

problem, especially when I am nervous.

I am constantly looking for a wall to lean against, or some other prop. I find

it very interesting that recently I notice my entire staff leaning on walls when

we speak as well. People tend to mimic each other subconsciously when speaking.

I find it endearing.

It is amazing how much we use our vision to gain balance. I have problems

especially at night or on uneven surfaces, which I avoid at all costs. When I

shower and close my eyes I have to be holding the wall or a handle.

I saw a TV special where regular people were asked to stand one-legged, which

they all could do with no problem. Then they were asked to close their eyes and

everyone toppled over. Everyone uses vision for balance but it is particularly

important for people with sensory deprevation.

I work with my chiropractor weekly on exercises to be able to best use the

senses and muscles that I still have. I believe it helps and it certainly does

no harm.

---- " cdwheels3@... " <cdwheels3@...> wrote:

>

> Hello All -

>

> I have been told by my Neurologist that my sub-type does not mesh with any of

the already identified sub-types. CMT goes back four generations in my

ancestry. Grandparents, aunts, uncles, and cousins have the similar symptoms.

The Neurology team will be bringing a portable test kit, take blood, and do

swabs at my family reunion in a couple of months.

>

> I just have no balance! I've fallen several times and have even fractured my

wrist badly last year. Absent light...things begin spinning and I fall. Uneven

ground ... a real challenge. Without my cane to counter-balance...I fall.

Every waking moment I'm thinking... " balance " or you will fall. Find a wall to

lean on or lay down. These are the only times I can relax and close my eyes.

>

> I'm taking physical therapy for balance but I'm not certain that " dead "

sensory nerves (neuronopathy)in my 6'6 " frame can come to life again. All of my

relatives are very tall like me. Could my family's problem be the length of

these peripheral nerves?

>

> Can balance be regained? I'm 59 years old.

>

> -wheels

>

March 19, 2010

A kindred spirit!

I'm a bit shorter at 6'2 " and a little younger (55), but our stories are very

similar! I tried PT for balance when I first began having balance issues a few

years ago. It was slow going, but I really believe it helped a lot. I had a

creative PT who picked up a cranial nerve issue (have them check your eyes). She

found out that some of my trouble was due to distractions - I was fairly okay if

nothing was going on, but I completely lost touch if things were going on around

me. So her therapy - she hooked me up to a harness on a ceiling track and had me

walk back and forth. Once I was settled, she would take a swing at me with a

styrofoam bat. At first, I simply fell, but gradually, I got better.

As time went on, she recruited other PT's who would also take swings at me -

high and low, from the left and the right over and over. The office (actually,

the outpatient clinic at a rehab hospital) seemed to look forward to my visits,

a chance to take out frustrations from dealing with uncooperative patients on

one that couldn't fight back!

I joked with the therapist that I felt very prepared should I ever be attacked

by a ferocious gang armed with styrofoam bats. Also, that I would buy my wife a

bat and she could take a swing at me any time I started to stumble because it

might help me regain my balance!

In the end, I showed much improvement on the test where they stand you on a

platform and wiggle it to see how well you react. And my confidence improved.

I wish it ended there, but it doesn't. I had a major fall and injured both

ankles in stepping from the wood floor in our hall to the carpet in my office. I

got AFO's. My neurologist said it was time to discuss disability, and I no

longer work.

In August, I developed left knee pain so I went to an orthopedic surgeon who had

fixed the knee long ago. I thought the AFO needed adjusting. It was a meniscus

tear. I put off surgery until November. Turned out it was two tears. Following

PT, my knee was okay, but my balance was shot. I now have elbow crutches and

AFO's, and now I'm doing great! I walk faster than before the surgery and I

haven't fallen a single time.

So stay with the balance therapy. Get your eyes checked to make sure you are

following movement well. And if you're still having trouble, the AFO/elbow

crutch combo is working very well for me.

Let us know how things go!

Jim

Sent from my Verizon Wireless BlackBerry

Can Balance Be Regained....How?

Hello All -

I have been told by my Neurologist that my sub-type does not mesh with any of

the already identified sub-types. CMT goes back four generations in my

ancestry. Grandparents, aunts, uncles, and cousins have the similar symptoms.

The Neurology team will be bringing a portable test kit, take blood, and do

swabs at my family reunion in a couple of months.

I just have no balance! I've fallen several times and have even fractured my

wrist badly last year. Absent light...things begin spinning and I fall. Uneven

ground ... a real challenge. Without my cane to counter-balance...I fall.

Every waking moment I'm thinking... " balance " or you will fall. Find a wall to

lean on or lay down. These are the only times I can relax and close my eyes.

I'm taking physical therapy for balance but I'm not certain that " dead " sensory

nerves (neuronopathy)in my 6'6 " frame can come to life again. All of my

relatives are very tall like me. Could my family's problem be the length of

these peripheral nerves?

Can balance be regained? I'm 59 years old.

-wheels

March 19, 2010

Thanks Jim - Your story sounds quite similar in that in addition to CMT my

neurologist found that I have nystagmus (shaky eyes) vertigo also. My

retinas have detached in both eyes (but were repaired). I'm sure that this

has something to do with my visual distractions that I have as well.

I'll continue with the PT and get bat dodging practice.

Thanks.

-wheels

March 19, 2010

For Clyde (-wheels)......I am a 76 year old female in NE Pennsylvania. I have

CMT1B and I also have Nystagmus. You are the first person I have read that has

both CMT and Nystagmus.

I was diagnosed with Nystagmus when I was 4 years old. Runs in father's side of

family. But...I never heard the word Nystagmus till I was in high

school.....everyone just said I had " Aunt Minnie's dancing eyes " . And I still

have them. I am sure a lot of my balance problems is because of " N " and the

rest from the CMT1B, a balance is one of my biggest problems.

I had numerous symptoms of CMT from birth on but me and my family just assumed I

was un-cordinated. Then when I was in my middle 60's I started falling (balance

problems) and testing found I had CMTB1.

Since my now symptoms are same as my Dad when he was my age I assume he had this

but his Dr. was only treating him for Pernicious Anemia and B12 definiency. But

my grand-father and great-grandfathers lost the use of their legs as they

approached their 80s.

Have a daughter (52 ) and a son (42),neither of whom have nystagmus (nor do any

of my 4 grand-daughters. However, my daughter has been diagnosed with CMT1B and

one of her daughters (24) but they do not have major symptoms, YET. My son

refused to be tested but I see some classic signs - high arches, hammer toes,

weak ankles, tingling in extremities. My walking gets worse each year...now

use a cane or a rollerator and a stair lift in my home is now a necessity.

Anyway, was interesting to find out there is someone else out there with both

CMT and N. But, I keep telling myself, it could be something worse.

June

March 19, 2010

Clyde,

I forgot about this in our Files. There some other info there too. There is more

info about Balance/Proprioception in our Links too. You may want to share this

with your PT.

Gretchen

Balance Training for HMSN (CMT)

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.

Matjaciæ 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.

March 19, 2010

I have been researching balance for for the last three months in order to write

a long(groan from all readers!) message on what I have discovered.

In a nutshell, balance involves melding three different responses from different

parts on the nervous system: the sensory nerves of the lower leg and foot, the

motor nerves of the lower leg and foot, and signals from the semicircular canals

of the inner ear. The motor functions of balance receive signals from both motor

systems -- voluntary and involuntary. To " regain " balance, one or more systems

must be enhanced.

Of the three systems, the one most likely to respond to therapy is the motor

system. In my opinion, the critical part of the entire balance equation is the

ankle. My ankles require physical therapy twice a year. I can tell when they are

weak by watching my feet as I walk. A strong ankle keeps my foot pointing

forward when I lift my foot to take a step. When my foot starts to wiggle

sideways I need more therapy. I wear orthotics in my shoes with sides that

extend up on both side of my foot. These orthotics keep my ankles from twisting

sideways and dumping me yet again.

A secondary benefit of ankle-strengthening exercises is that the same exercises

strengthen the toes and increase range of motion. This helps negate some of the

problems of footdrop.

With all the above, I would still fall as I have Meniere's Disease that affects

the semicircular canals. I solve that problem by forearm crutches.

The first FIRST F I R S T response to falls should a stick or sticks. I like the

steadiness offered by forearm crutches. A cane helps, but I find it difficult to

keep the same geometry using my wrist as the fulcrum of balance. The forearm

crutch uses the entire forearm as the fulcrum.

Unfortunately, almost nothing helps with wet cobblestones found here in Rome.

Regards.

--Larry

March 19, 2010

Are there any medications, vitamins or other things that might help restore

balance. I too have a difficult time in the shower when closing my eyes, and

would kill to get my balance back.

>

> Clyde,

>

> I forgot about this in our Files. There some other info there too. There is

more info about Balance/Proprioception in our Links too. You may want to share

this with your PT.

>

> Gretchen

>

> Balance Training for HMSN (CMT)

>

> 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.

>

> Matjaciæ 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.

>

March 20, 2010

Clyde,

I have no balance at all now. I haven't been able to stand in the shower for

years, so I bought myself a little shower chair. I does the trick for me. I

also have a fold-up shower chair in case I need it some time for travel.

Lyn

March 20, 2010

None. No medications. Only PT. Also, I’ve installed a grab bar in the

shower after I tore down my curtain rod trying to use it as a make-shift grab