Re: Balance In Darkness Puts Me In Panic Mode

[Guest guest]

Perhaps proprioception training (balance) by a physical therapist? May help with

knowing where your body is in space and time. Part of my aquatic exercise

program includes this.

Gretchen

[Guest guest]

Hi,

I have that issue too, but to a much lesser degree.  I have to be careful

closing my eyes in the shower, because I can lose my position and panic a little

as you describe. 

It sounds like a proprioception issue, as Gretchen mentioned, where you body

knows where it's at based on feedback from your muscles and other senses.  When

muscles don't send proper signals back, we rely move on vision.  When it's dark

(or eyes are closed), we lose the ability to establish our place in space with

our eyes.

http://en.wikipedia.org/wiki/Proprioception

Gretchen mentioned the proprioception training.  Perhaps some occupational

therapy might help too (getting assistance with figuring out alternative/safer

ways to do daily activities).

[Guest guest]

Thanks Gretchen -

I will plan on starting some aquatics exercises. Is the type you had " deep

water running? "

On Feb 1, 2011, at 12:36 PM, " gfijig " <gfijig@...> wrote:

> Perhaps proprioception training (balance) by a physical therapist? May help

with knowing where your body is in space and time. Part of my aquatic exercise

program includes this.

>

> Gretchen

>

>

[Guest guest]

Thanks . I will enroll in aquatic exercises.

On Feb 1, 2011, at 1:39 PM, <agraham2k@...> wrote:

> Hi,

>

> I have that issue too, but to a much lesser degree. I have to be careful

closing my eyes in the shower, because I can lose my position and panic a little

as you describe.

>

> It sounds like a proprioception issue, as Gretchen mentioned, where you body

knows where it's at based on feedback from your muscles and other senses. When

muscles don't send proper signals back, we rely move on vision. When it's dark

(or eyes are closed), we lose the ability to establish our place in space with

our eyes.

>

> http://en.wikipedia.org/wiki/Proprioception

>

> Gretchen mentioned the proprioception training. Perhaps some occupational

therapy might help too (getting assistance with figuring out alternative/safer

ways to do daily activities).

>

>

>

>

[Guest guest]

In keeping with your note on additional info ...I'm 60 yrs old, no AFOs, no drop

foot.

On Feb 1, 2011, at 12:36 PM, " gfijig " <gfijig@...> wrote:

> Perhaps proprioception training (balance) by a physical therapist? May help

with knowing where your body is in space and time. Part of my aquatic exercise

program includes this.

>

> Gretchen

>

>

[Guest guest]

Don't take you clothes off in the dark!

But seriously, I know I have that problem and it has to do with

proprioception or my ability to tell where my body is in space. I am

on a scooter so I don't have to worry about falling, but when I

wasn't, being in the absolute dark was awful (panic mode is right on).

I had to have a light source to orient myself, my sense of where my

body is in my mind. I had to sit to undress. Also moving water and a

moving car's wheels can almost make me toss my cookies. And I have o

look to see if my feet are in the car. I can no longer tell. Sometimes

when I stand to transfer to the toilet, I can't really tell if I'm

standing. It's really a strange, almost terrifying feeling because you

know that you're losing it but you aren't sure what and to what degree

it will affect the rest of your ability to function.

You are definitely not alone.

L.

[Guest guest]

Clyde,

Part is deep water running and biking, other parts are martial arts movement and

floation device hand/eye coordination called " eye tracking " .

Gretchen

>

> > Perhaps proprioception training (balance) by a physical therapist? May help

with knowing where your body is in space and time. Part of my aquatic exercise

program includes this.

> >

> > Gretchen

> >

> >

>

>

>

[Guest guest]

I have the same problem. I carry a flashlight in my car and on my key

chain. I can't take a single step in the dark. I mean that literally. If my eyes

are not open my brain can't make a connection to my legs. It's all fun

stuff.

In a message dated 2/1/2011 9:33:14 A.M. Pacific Standard Time,

cdwheels3@... writes:

Please tell me if you have a similar problem and what you do about it.

Whenever I am standing and the lights get turned off (complete

darkness)..whenever I pull my T-shirt or any shirt over my head..whenever we

have

power failures..whenever I close my eyes while standing I have a " very serious "

balance problem. I just lose it completely! I get in a panic mode. I have

fallen and have broken bones. I start wavering and will fall if I can't

have sufficient light. Now I've started carrying a little flashlight with me

because of the most recent power outages due to the weather.

[Guest guest]

Hello Clyde,

At the risk of being facetious, take very good care of your eyes!

EdM from NH

P.S. - I have similar problems and I take very good care of my eyes as I

have only one eye left to drive a car with. One thing that does help is

to touch something your mind knows is grounded and firm. Lean against a

wall or piece of furniture or sit on something for example. You'll get a

lot of response on this because I think we all have this problem and have fallen

into the habit as a matter of course.

[Guest guest]

Hi Clyde,

I am relatively new to the group, but am experiencing a similar problem but

not as severe as yours. I am 53 years old, newly diagnosed, have numb feet

and weak ankles- but no foot drop or AFOs. I also have a problem with

balance- but usually only with my eyes closed. I can not walk a straight

line with one foot in front of the other without tipping over. (like they

ask you to do in the neurologist's office). However, I usually have no

problems walking " normally " . I have been this way for years. It was only

recently that I found out this was related to my CMT.

I requested my doctor to send me to a physical therapist and it has been

most helpful. She is teaching me some " exercises " that I can do to

strengthen my ankles and improve my balance. I was not aware of the term

proprioception, but after reading about it on wikipedia it made alot of

sense.

My neurologist and physical therapist described it like this. Your

balance is controlled by 3 things- your eyesight, your hearing nerve (8th

cranial), and the sensation of your feet. That's why numb feet can cause

problems with balance in my case, because my sensation is significantly

diminished. Then when I close my eyes on top of that, it makes it more

difficult still. It is also more difficult when I stand on only one foot-

but I suspect that is also an issue of weak ankle muscles.

Anyway, I have these exercises to do which are supposed to help improve my

balance-- standing on one foot, standing with one foot in front of another,

doing these exercises standing on a pillow or spongy foam board, doing these

exercises with my eyes closed (can't do that one well at all at this

point), walking on my toes, walking on my heels, doing some gentle

stretching and working of my ankle muscles. I think it will take alot of

time and daily practice before I see any results, but I am committed to

giving it a try.

I think over the last few years I have been compensating

with my eyes alot when it comes to balance. So now I'm really noticing the

difference when I have to do things with my eyes closed. But I can still do

okay walking in the dark slowly- because I am still okay when I have both

feet on the ground. I think alot of dealing with CMT is learning to do

things differently, learning to compensate for losses in certain areas.

That's why I find this group so helpful in learning tips on how to cope in

these different areas.

Blessings,

Barb from South Africa (but in MN at the moment)

[Guest guest]

same here

For anyone that has the IPhone, there is a Flashlight (free) App. I use that at

night when the house is dark and i get up to the bathroom. Much eaiser and

lighter to carry than a real flashlight.

Jackie

(Axonal CMT-unknown type; Age 49)

Re: Balance In Darkness Puts Me In Panic Mode

 

I have the same problem. I carry a flashlight in my car and on my key

chain. I can't take a single step in the dark. I mean that literally. If my eyes

are not open my brain can't make a connection to my legs. It's all fun

stuff.

In a message dated 2/1/2011 9:33:14 A.M. Pacific Standard Time,

cdwheels3@... writes:

Please tell me if you have a similar problem and what you do about it.

Whenever I am standing and the lights get turned off (complete

darkness)..whenever I pull my T-shirt or any shirt over my head..whenever we

have

power failures..whenever I close my eyes while standing I have a " very serious "

balance problem. I just lose it completely! I get in a panic mode. I have

fallen and have broken bones. I start wavering and will fall if I can't

have sufficient light. Now I've started carrying a little flashlight with me

because of the most recent power outages due to the weather.

[Guest guest]

I agree! Let's all take our clothes off in broad daylight (or full-spectrum

light-bulbs!)!! lol

;-)

>

> Don't take you clothes off in the dark!

> But seriously, I know I have that problem and it has to do with

> proprioception or my ability to tell where my body is in space. I am

> on a scooter so I don't have to worry about falling, but when I

> wasn't, being in the absolute dark was awful (panic mode is right on).

> I had to have a light source to orient myself, my sense of where my

> body is in my mind. I had to sit to undress. Also moving water and a

> moving car's wheels can almost make me toss my cookies. And I have o

> look to see if my feet are in the car. I can no longer tell. Sometimes

> when I stand to transfer to the toilet, I can't really tell if I'm

> standing. It's really a strange, almost terrifying feeling because you

> know that you're losing it but you aren't sure what and to what degree

> it will affect the rest of your ability to function.

> You are definitely not alone.

> L.

>

[Guest guest]

i guess i didn't relate it to my CMT but a couple years ago i got tired of

running into things in the house and cracking a sheetrock wall just because it

was dark when i knew where everything was, so no brainer - i just bought a bunch

of night lights, now dark spots in the house are hard to find and i don't have

any more balance issues than normal that way. my CMT isn't the most advanced so

perhaps others may have different results but it has helped me.

david mishler

From: jackiesachs@...

Date: Wed, 2 Feb 2011 17:44:52 +0000

Subject: Re: Balance In Darkness Puts Me In Panic Mode

same here

For anyone that has the IPhone, there is a Flashlight (free) App. I use that at

night when the house is dark and i get up to the bathroom. Much eaiser and

lighter to carry than a real flashlight.

Jackie

(Axonal CMT-unknown type; Age 49)

Re: Balance In Darkness Puts Me In Panic Mode

I have the same problem. I carry a flashlight in my car and on my key

chain. I can't take a single step in the dark. I mean that literally. If my eyes

are not open my brain can't make a connection to my legs. It's all fun

stuff.

In a message dated 2/1/2011 9:33:14 A.M. Pacific Standard Time,

cdwheels3@... writes:

Please tell me if you have a similar problem and what you do about it.

Whenever I am standing and the lights get turned off (complete

darkness)..whenever I pull my T-shirt or any shirt over my head..whenever we

have

power failures..whenever I close my eyes while standing I have a " very serious "

balance problem. I just lose it completely! I get in a panic mode. I have

fallen and have broken bones. I start wavering and will fall if I can't

have sufficient light. Now I've started carrying a little flashlight with me

because of the most recent power outages due to the weather.

[Guest guest]

Why in the world anyone with CMT would close their eyes in the shower while

standing is way beyond me!

And don't remove pull-off clothing while standing. It gets dark in there.

If the lights go out, immediately recall your surroundings and drop your hiney

to the floor, hands first. Please, no more broken bones!

>

> Hello All -

>

> Please tell me if you have a similar problem and what you do about it.

>

> Whenever I am standing and the lights get turned off (complete

darkness)..whenever I pull my T-shirt or any shirt over my head..whenever we

have power failures..whenever I close my eyes while standing I have a " very

serious " balance problem. I just lose it completely! I get in a panic mode. I

have fallen and have broken bones. I start wavering and will fall if I can't

have sufficient light. Now I've started carrying a little flashlight with me

because of the most recent power outages due to the weather.

>

> Any advice?

>

> Thanks.

>

[Guest guest]

Thanks Jackie -

I saw where the IPod Touch has a free flashlight app and downloaded it. I keep

my Touch with me all the time.

Thanks.

Clyde

>

[Guest guest]

Thanks EdM -

Good advice that I take very seriously. Unfortunately I also have a

degenerative eye disease of the retina (both eyes). I see my ophthalmologist

every six months. I also have nystagmus vertigo. Anything scrolling drives me

nuts.

Thanks again. I've gotta take care of my eyes.

Clyde from land

[Guest guest]

Thanks -

I also have a couple of canes for nighttime use away from home. One is the

" pathlighter " and the other has a small flashlight in the handle. I'm going to

bring one of those out from the car into the house.

Clyde from land

[Guest guest]

Hello,

I understand the panic mode.  I have a hard time even sitting up in bed, when

the lights are low, let alone during a power shortage.  I had to get a generator

that comes on immediately when the power goes off. It's works great!

Kay~ On the beautiful Oregon Coast USA

[Guest guest]

I like 's suggestion: don't take your clothes off in the dark!

I had a PT once, before diagnosis with CMT who felt that all my injuries stemmed

from a balance issue. He did tests on me like what you describe (basically, can

I stand without falling over with my eyes closed?) and began a program to teach

me how to better " sense " my body position using other senses. His goal was to

have me stand on a cylindrical foam log with my eyes closed. Yeah, right!! That

never happened even with them open, but I did get pretty good at the half log

(flat side down). To his credit my only injuries since have been non-fall

related.

Another thing I do on my own, when I have to close my eyes, like in the shower:

I always put the flat of my hand on the wall, just to verify that I'm standing

upright, and pointed in the right direction. I usually use furniture and walls,

just a touch, to orient myself in the dark. Getting panicky actually makes it

worse in my experience. Stop, deep breaths, a touch of something solid for

orientation and I'm good again.

Holli, 47, Tarzana, CA, USA

CMT1a, orthotics, no AFOs

>

> Hello All -

>

> Please tell me if you have a similar problem and what you do about it.

>

> Whenever I am standing and the lights get turned off (complete

darkness)..whenever I pull my T-shirt or any shirt over my head..whenever we

have power failures..whenever I close my eyes while standing I have a " very

serious " balance problem. I just lose it completely! I get in a panic mode. I

have fallen and have broken bones. I start wavering and will fall if I can't

have sufficient light. Now I've started carrying a little flashlight with me

because of the most recent power outages due to the weather.

>

> Any advice?

>

> Thanks.

>

[Guest guest]

My biggest problem is when there is not a wall or a piece of furniture to lean

on. I psych myself up and try to keep the panic from happening. It is natural to

panic when you don't feel in control of you body

I use a chair in the shower but if I an standing and have to close my eyes to

keep soap from getting in I always anchor my hip or my hand on the wall.

Jackie in Florida

[Guest guest]

Clyde,

Do you use the Coakley or Liberty cane Just curious since you said you have

flashlight In handle and you are from land which is where

Coakley the inventor is from.

Jackie- previously from md!

[Guest guest]

Auggie - it's difficult for girl to wash her hair without closing her eyes, you

know.

For me, I could suddenly lose my sense of position in space, whether I'm sitting

or standing.  I do what Holli mentioned, I touch the wall.  There are also

handles that can be attached to the wall for balance.  Some work well on tile

and aren't that expensive.

Clyde - my husband (who doesn't have CMT) has balance issues from his Retinitis

Pigmentosa.  He needs lots of light to keep balance.  We have bright night

lights on every wall and they are all on timers to go on at dusk and off at

dawn.  We also have portable (pillar candle-looking) lights that are battery

operated (he picked up at Costco), to use in the event of a power outage, as

well as several flashlights.

in So Calif

(40's, CMT 1A)

>

[Guest guest]

-

I have attached a suction cup grab bar in the shower to hold on to and recently

bought several battery-operated lanterns made by and Ray-O-VAC.

Clyde (60 yrs, no AFOs, no dropfoot, and a non-standard CMT type)

>

>

[Guest guest]

Jackie -

Not really sure who invented it. It is made by Carex and I ordered it from a

company called Active Forever.

Clyde (60yrs, no drop foot, no AFOs)

On Feb 2, 2011, at 3:03 PM, Jackie <jackiesachs@...> wrote:

> Clyde,

>

> Do you use the Coakley or Liberty cane Just curious since you said you have

flashlight In handle and you are from land which is where

> Coakley the inventor is from.

>

> Jackie- previously from md!

>

>

[Guest guest]

Thank you all for your valuable feedback to what I thought was only my wacky

problem! I've learned that it was not uncommon at all...and I thank you all.

Most of you have found ways to adapt. It reminds me why I sought out a

support group like this.

I feel truly blessed. Thank you!

Clyde (60yrs, diagnosed 2008 but recognized slow degeneration for 25 yrs,

land)

>

>