Re: just ignorant and stubborn?

January 21, 2002

>Any

> positive...or realistic feedback is welcome. Thanks so much.....

>

> Mamie

**********************************************************************

********** posted January 08, 2002 12:30 AM

----------------------------------------------------------------------

----------

AFO's are the old " rock and a hard place "

" catch 22 " ,in my opinion.

the more you wear them the more you need them

When you get to the point though that you need them (quality of life

assessment) than you need them (long term damage must be avoided)

Daily Pain + damage=need braces(AFO " s). Hard decision !!!!!!!!

Personal decision.

Hope that made at least a little sense.

*************************************************************Hello

Mamie

I believe in stubborn not in ignorant, get the afo , try them and you

will answer your self.

Then, if you want and they don't raise your quality of life you can

throw them in the closet !

Rocky

January 21, 2002

AFOs are tools to improve life, just as eyeglasses are.

I still remember a friend I first met 50 years ago. We were both Girl Scout

counselors, at a camp in Idaho. She continually walked into trees because she

was too vain to admit she needed glasses! We met again in Seattle, and have

been close friends ever since. When she finally started wearing glasses she

found that the world was a much more friendly place - no more lumps on her

head from walking into objects. She could also learn to drive and go to

college because she could see farther than the end of her nose when she had

her glasses on.

We wouldn't ask a carpenter to cut boards with his teeth or hammer nails with

his fist. He uses tools. We sometimes need tools too, including eyeglasses,

hearing aids, AFOs, walkers, power chairs, scooters, and so forth. Whatever

is available to keep our lives reasonably pleasant should be used to our

advantage.

Kat

Seattle USA

http://www.icewindow.com

January 21, 2002

Mamie,

Hi. My name is Ruth and I consider myself a CMT veteran. I am

43, was diagnosed at age 6 and have family members with CMT that were

diagnosed well over 50 years ago.

I have been through the AFO battle with myself. It took me a couple

years after I realized I probably needed them to go ahead and get a

pair fitted. The fear of falling and having my knees buckle

unexpectedly out from under me finally convinced me it was time.

After I had them, it was 9 months before I put them on to wear them!

I started wearing them when I turned 40. (By the way, I wore leg

braces for many years as a child - but just during the night, not in

the daytime.)

I was blessed to have an expert at Duke make my first pair of AFOs to

walk in - they fit like a charm. And they keep me on my feet. I

could not " walk the mall " with my kids if I did not have them. Do I

depend on them??? Heck yes, and if I did not have them I would be

doing less, not more. I will repeat, they keep me ON my feet and

active.

I had to change my fashion style as a result. I experimented with

different styles of clothing, and struggled with the feeling of being

unattractive in AFOs. During this past year, I have found that boot

cut blue jeans are my best friend! I have lost some weight, gotten

my pre-pregnancy figure back (I have 3 girls) and feel downright sexy

in a pair of boot cut blue jeans and a solid t-shirt. Most people do

not realize I am wearing AFOs.

It's a personal battle. I have been there and done that and

understand how you feel. The feeling of acceptance does not happen

overnight. Like I said, I had my first pair for 9 months before I

could bring myself to wear them. Now, unless I am dressing up, I

won't leave the house without them! Here's a simple coping tip I

use. Underneath my jeans, I simply pretend I have a pair of boots

on. They feel about the same as a pair of boots would! It's just a

little mental game I play with myself.

Keep posting your thoughts and questions. It's one way to work

through your feelings on this issue.

By the way, do we have the same middle name??? I never see the

name beth spelled with an " s " like mine is!

Ruth beth Warren

Raleigh, NC

> Hi, I am new to this site and group, though not new to CMT. I was\

> diagnosed when I was 13, but have pretty much been coping with this

> on my own for the last 12 years. I have recently moved to Denver,

> and thought it would be a good idea to see a specialist

(neurologist)

> here since I had never really remember speaking to a doctor that I

> felt was any help to me. This time the doctor WAS knowledgeable

and

> seemed to have a few creative suggestions that other individuals

with

> CMT use to cope with everyday frustrations. I have known going

into

> every doctor's appointment that basically my future holds two

options-

> - AFO's (leg braces) or surgury....as many of you have also most

> likely dealt with this reality........................

January 21, 2002

Hi...does anyone have any suggestions for summer wear with AFOs???

I was wondering because I absolutely wearing mine in the summer because they

are SO HOT! (Not to mention very unattractive!) You would think with

today's modern inventions, someone could invent an AFO which fits into any

shoe and works as well. Hey, maybe we could all get together and market such

a device! $$$$$, too!

Karon

January 21, 2002

Hi Mamie: I got AFO's when I was about 34; I'm now 46. I was very

relieved to have a plastic under-the-knee brace vs. the old klunky

metal over the knee kind (which I did at first - DIDN'T WORK - and I

was totally stressed out at the thought). I have always worn pants,

so the fact that the AFO could be covered and worn in a decent sport

shoe didn't bother me. I was in severe knee pain and I had an

infant, so I had to do something. Yes, I became dependent on them,

but 12 years later I'm still walking and usually have no pain

(although I have less endurance). It has 'structurally' kept my

disease from increasing bone deformity. Some people do not wear

theirs 100% of the time either.

If you get a good fit, I think your spirits will be lifted because of

how much easier walking and standing will be. I felt like I had been

set free once I learned to walk again. No fear of falling or tipping

over (I use forearm crutches, too). My poor Mom just couldn't

understand it all, the sight of them depressed her, and you may get

some reactions like that........but how shallow, really.

Have no fear, my dear...

Melody

> Hi, I am new to this site and group, though not new to CMT. I was\

> diagnosed when I was 13, but have pretty much been coping with this

> on my own for the last 12 years. I have recently moved to Denver,

> and thought it would be a good idea to see a specialist

(neurologist)

> here since I had never really remember speaking to a doctor that I

> felt was any help to me. This time the doctor WAS knowledgeable

and

> seemed to have a few creative suggestions that other individuals

with

> CMT use to cope with everyday frustrations. I have known going

into

> every doctor's appointment that basically my future holds two

options-

> - AFO's (leg braces) or surgury....as many of you have also most

> likely dealt with this reality. I have plenty to be grateful for,

> and feel I cope/ compensate as best I can...hey, it's a way of life

> for us:) This time however, I did not feel I had the option. The

> doctor wrote the prescription...saying " You will try

them " ...and " you

> will come back and tell me how it is going " . Perhaps he did not

give

> me the option because no one is going to be overjoyed in making

this

> transition in their life......but has he no empathy?! ANyway, the

> point of this posting is simply to hear from those of you who

> have " Made the choice " to wear AFO's. I need to hear from someone

> who has walked in my shoes...and know what it feels like...knowing

> that your life could be easier in some ways.....yet resistant

because

> of self- pride...or self- esteem....or pure will not wanting to

give

> in the an alternative lifestyle.....whatever the mental obstacle

is.

> I am sure there are things I have not considered. I may just be

> resistant right now because everyone that loves me in my life wants

> so much to help.....and the next logical step is leg braces. Has

> anyone else ever had a hard time with this? Is it just me? I want

> so much to do what is right for me......but I have never ever

wanted

> to give up or give in before I need to....and even then it is

hard.

> Perhaps I need to see the situation in a new light.....a more

> positive light...instead of feeling self- defeated. Any

> positive...or realistic feedback is welcome. Thanks so much.....

>

> Mamie

January 21, 2002

Hey, maybe we could all get together and market such

> a device! $$$$$, too!

>

> Karon

>

**********************************************************************

************hum.........625 X (a)=$$$$$$$$$$$$$$

January 21, 2002

OH Mamie, you will enjoy the braces so much. Walking will be so much easier.

My first appliance was inserts for my shoes. Worked for a while. In time I

had to go the AFO " s and it was like a whole new world opened up for me. I

could get around so much better and did not tire as easy. I wear slacks a

lot but long skirts are in now. They world help hide the braces. I like the

look of AFO's. knee socks and long shorts. Just being able to get around

better make the braces worth while. No one suggested surgery for me.

January 21, 2002

I love this responce to Mamie Butterflypower you say SO MUCH with so

few words-Thanks

Rocky

**********************************************************************

************

> Marnie,

> I am 16 and have had AFO's for 6 months or so.....And my

> response to them is I LOVE THEM AND I HATE THEM....

> my ankles don't collapse with them and the extra support

> is nice, but I STILL HATE THEM! The looks you get from

> people....are not fun....but most of all...I dislike the way I

> can only wear certain shoes with them. I also dislike the

> way they have at times created sore spots and rubbed the

> wrong ways. And lately my AFO's have BROKEN a lot.

> So they're tired of repairing them. So they decided to mold

> me a new style and we'll see what's up with that! So I love what

> they do for me but hate their appearance. I wish there

> were an easier way...I hate to be pressuring but like Sue

> said, they help in the long run...slow the damage at least.

> I hate them...and I can choose to hate them but I have to

> wear them. I have to say, if my mom hadn't forced me to

> get them, I probably would've refused them...but they do

> help! And you'd be surprised, the people you are closest

> to might not even care that you're wearing AFO's....they know

> what's wrong and are happy that AFO's can help you...

> But sometimes the battle that's hardest to win is the one

> you have with yourself. I know that's true for me...Anyways,

> Good Luck with your decision!

>

January 22, 2002

Hi, everyone. I have concerns regarding wearing AFO's. My doctor prescribed

them for me over a year ago. I haven't gotten the prescription filled. My

fear is that since my legs are so terribly weak already, I don't think I

have the strength to put more weight on my legs. Any thoughts? Thanks,

----- Original Message -----

From: <butterflypower@...>

< >

Sent: Monday, January 21, 2002 7:45 PM

Subject: Re: [] just ignorant and stubborn?

>

ANyway, the

> > point of this posting is simply to hear from those of you who

> > have " Made the choice " to wear AFO's

January 22, 2002

> Rocky,

> Thanks, you have no idea how good that felt...

> Having a rough day but what you said brightened

> my spirit and made it better!

>

> ********************************************************

>

It's spreeding like wildfire, I feel great, thank you!

Rocky --watch out if I think I can help I will type my fingers off

January 22, 2002

Marnie,

I am 16 and have had AFO's for 6 months or so.....And my

response to them is I LOVE THEM AND I HATE THEM....

my ankles don't collapse with them and the extra support

is nice, but I STILL HATE THEM! The looks you get from

people....are not fun....but most of all...I dislike the way I

can only wear certain shoes with them. I also dislike the

way they have at times created sore spots and rubbed the

wrong ways. And lately my AFO's have BROKEN a lot.

So they're tired of repairing them. So they decided to mold

me a new style and we'll see what's up with that! So I love what

they do for me but hate their appearance. I wish there

were an easier way...I hate to be pressuring but like Sue

said, they help in the long run...slow the damage at least.

I hate them...and I can choose to hate them but I have to

wear them. I have to say, if my mom hadn't forced me to

get them, I probably would've refused them...but they do

help! And you'd be surprised, the people you are closest

to might not even care that you're wearing AFO's....they know

what's wrong and are happy that AFO's can help you...

But sometimes the battle that's hardest to win is the one

you have with yourself. I know that's true for me...Anyways,

Good Luck with your decision!

On Mon, 21 Jan 2002 01:54:51 -0000 " trueblue9576 "

<mamie_elisabeth@...> writes:

> Hi, I am new to this site and group, though not new to CMT. I was\

> diagnosed when I was 13, but have pretty much been coping with this

> on my own for the last 12 years. I have recently moved to Denver,

> and thought it would be a good idea to see a specialist

> (neurologist)

> here since I had never really remember speaking to a doctor that I

> felt was any help to me. This time the doctor WAS knowledgeable and

>

> seemed to have a few creative suggestions that other individuals

> with

> CMT use to cope with everyday frustrations. I have known going into

>

> every doctor's appointment that basically my future holds two

> options-

> - AFO's (leg braces) or surgury....as many of you have also most

> likely dealt with this reality. I have plenty to be grateful for,

> and feel I cope/ compensate as best I can...hey, it's a way of life

> for us:) This time however, I did not feel I had the option. The

> doctor wrote the prescription...saying " You will try them " ...and

> " you

> will come back and tell me how it is going " . Perhaps he did not

> give

> me the option because no one is going to be overjoyed in making this

>

> transition in their life......but has he no empathy?! ANyway, the

> point of this posting is simply to hear from those of you who

> have " Made the choice " to wear AFO's. I need to hear from someone

> who has walked in my shoes...and know what it feels like...knowing

> that your life could be easier in some ways.....yet resistant

> because

> of self- pride...or self- esteem....or pure will not wanting to give

>

> in the an alternative lifestyle.....whatever the mental obstacle is.

>

> I am sure there are things I have not considered. I may just be

> resistant right now because everyone that loves me in my life wants

> so much to help.....and the next logical step is leg braces. Has

> anyone else ever had a hard time with this? Is it just me? I want

> so much to do what is right for me......but I have never ever wanted

>

> to give up or give in before I need to....and even then it is hard.

>

> Perhaps I need to see the situation in a new light.....a more

> positive light...instead of feeling self- defeated. Any

> positive...or realistic feedback is welcome. Thanks so much.....

>

> Mamie

>

January 22, 2002

> Hi, everyone. I have concerns regarding wearing AFO's. My doctor

prescribed

> them for me over a year ago. I haven't gotten the prescription

filled. My

> fear is that since my legs are so terribly weak already, I don't

think I

> have the strength to put more weight on my legs. Any thoughts?

Thanks,

>

*****************************************************************

**********************************************************************

****Hello

I don't think I understand your fear, because it seems like braces

take the " weight " off you legs at least the section below the knees.

AFO " s made a big inprovement in my life.

Maybe, like I say, I may be misunderstanding your post.

Sometimes like libby said we don't notice how we strugle because we

have not experenced normal--libby has obvously done some serous

thinking on the subject and says it clear ahh.

It may make life easier then you even considered

But then keep in mind I know nothing, but there is my 2 cents

Rocky

January 22, 2002

--also I think the large leg muscules get over worked because

the lower leg mucules arent doing there job----fetigue in thighs

etc...results

Rocky

January 22, 2002

Rocky,

Thanks, you have no idea how good that felt...

Having a rough day but what you said brightened

my spirit and made it better!

On Mon, 21 Jan 2002 23:37:20 -0000 " rocky2k22002 " <woodchuck1964@...>

writes:

> I love this responce to Mamie Butterflypower you say SO MUCH with so

> few words-Thanks

> Rocky

> **********************************************************************

________________________________________________________________

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January 23, 2002

Hi Mamie,

I am 59 CMT1 Dx age 6. When I was 32 I had to have surgery's) done on my right

foot / ankle an Achilles tendon lengthening and a triple arthrodisis (

Spelling??). It helped a lot. At age 36 I decided to go back to the

orthopedist

who did the first surgeries, to see if he could help me again but with my left

foot / ankle. He said he would not do any surgery that I should get AFOs

instead. I remember thinking at the time " I'm not a cripple. " and " I'm not

going

to ware those things. " I was deeply hurt. The doctor must have noticed the look

on my face and went on to explain that he thought it was far to early to do

surgeries and I should just try the AFOs out for a while. Well that was 23

years

ago and I'm on my third set of AFOs. The AFOs improved the quality of my life.

The hardest part for me was me accepting the fact that I needed the AFOs. CMT

does step on our pride and self - esteem they both get bruised but it seems to

me

most of the people on this list and other lists for CMT are resilient.

Some of the CMT people that have had to have surgeries report their CMT symptoms

worse after their surgery. Maybe that was the reason your Dr didn't give you an

option. The surgeries I had my leg was in a cast for three months and on

crutches

for an additional three months. That wa the required time I was not allowed to

even bare any weight on the foot for four months. Although I didn't have a

choice

at the time.

I think you'll enjoy the group.

Happy Trails

Owen

trueblue9576 wrote:

> Hi, I am new to this site and group, though not new to CMT. I was\

> diagnosed when I was 13, but have pretty much been coping with this

> on my own for the last 12 years. I have recently moved to Denver,

> and thought it would be a good idea to see a specialist (neurologist)

> here since I had never really remember speaking to a doctor that I

> felt was any help to me. This time the doctor WAS knowledgeable and

> seemed to have a few creative suggestions that other individuals with

> CMT use to cope with everyday frustrations. I have known going into

> every doctor's appointment that basically my future holds two options-

> - AFO's (leg braces) or surgury....as many of you have also most

> likely dealt with this reality. I have plenty to be grateful for,

> and feel I cope/ compensate as best I can...hey, it's a way of life

> for us:) This time however, I did not feel I had the option. The

> doctor wrote the prescription...saying " You will try them " ...and " you

> will come back and tell me how it is going " . Perhaps he did not give

> me the option because no one is going to be overjoyed in making this

> transition in their life......but has he no empathy?! ANyway, the

> point of this posting is simply to hear from those of you who

> have " Made the choice " to wear AFO's. I need to hear from someone

> who has walked in my shoes...and know what it feels like...knowing

> that your life could be easier in some ways.....yet resistant because