Re: Balance In Darkness Puts Me In Panic Mode

[Guest guest]

Some of the exercises you do would be impossible for me..

Geri

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]

Me too.....not for any reason....... or in the day light!

Gets one in trouble in more ways then one!

Geri (Minnesota)

[Guest guest]

You know, I wash my hair too. lol ;-) I just don't wash it holding a

metaphorical grenade. I even use 'adult' stinging shampoo, and heaven forbid (!)

I should open my eyes for any reason. So, I'm clean, and neat, and cute, and

blah, blah, blah ....

It just literally gives me chills reading some of these posts! Why in the world,

if you already have a known nerve/muscle/balance problem would you ever stand in

a shower, much less close your eyes?! Those goldie-locks are not worth falling

and breaking bones or killing yourself. Just SIT DOWN.

And on that, I'm going to go drink a glass of beet juice.

;-)

>

> 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 Holl

i 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)

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[Guest guest]

I lean on my L elbow when closing eyes to wash hair.

Dawn-originally from Buaffalo, NY

[Guest guest]

Jackie -

Thanks for letting me know about the Liberty (Coakley) Cane. I chased it down

on Google and ordered it. Got it this past week and it is truly a blessing.

While it doesn't have a light on it it does have a " spoon-like pocket to

accommodate a light, alarms, etc. I found a cheap (keychain-size) garage door

opener that has a flashlight button and was able to program my garage door to

open/shut from my cane for when I check for mail, get the paper, put out the

trash/recyclables, or go on my errand with others..I rarely use my front door.

The cane has so many very unique features. I also called the number in the

documentation and spoke with Coakley and learned a lot more of the unique

features of his cane.

If there are others looking at unique canes, Liberty Canes describes the cane

at: www.libertycane.com

Thanks again.

Clyde