Doing a long study of brace users - I started to think about it , and the hot climate I lived in..... - Personal - http://maxpages.com/happymspage/experiences_with_AFOs_and

UP DATE March 28,2004
I was in the orthosist shop being cast with plaster and being measured.While the plaster was drying the man brought a model of what my braces would look like.They were white plastic with velcro connectorsat the top and about the ankle.They would hold the feet from falling down or what was called drop foot .Except I had it in both feet.The foot plate which would fit into the shoe was hinged to the uper part .The plastic ran along the back calf of my leg."Yours will look like this except you could select the color now and they will be made exactly for you" Then he whipped out the color samples .He had various colors but the flesh color looked the best to me.He said that is for women,men pick the white."I don't care I want the flesh color'
OK we can't change it once its done. That is what I want.
You know in the years I wore these AFO braces the color of flesh never bothered me.But I will say once I started living in Florida the contact of the plastic against my legs bothered me when it was hot. And its hot a great part of the time here. As I complained to my doctor many times about the heat factor finall he said since you have had the braces for 7 years maybe the insurance company will buy you some new ones.He said I'll send you to the orthosist and you tell him what you want.
I did go and he recogmended the calliper variety."do you have models I asked?"
No not at the moment but I have photos of all my patients.

He brought in a bunch of photos in a book.There were many faces and people with various needs." I don't give out names as that would be unprofessional" But I will tell you if I remember their reasons for needing braces. His scrap book had sections of various types of braces.Those for the back,neck,arm and legs. In the legs section they were further divided by full braces and then AFOs.In the AFO section there were plastics,carbon fiber type and metal and leather.
He said the metal and leather were the old style but probably the coolest since they would only make contact with the leg at one place ,about 1 and a half inces below the knee.
Then he said the disavantage is these usually come with a calliper which needs a calliper plate attached to the bottom of the shoes.This limits the wardrobe of shoes.
"But we have a slightly different model with the foot plate that will permit you any shoe almost"
While he couldn't tell me names i noticed a photo of a woman who I happen to know through a local MS group.She was one of the few with a face in the photos as most had their face turned away from the camera when the pictures were taken.But how could I get to her as I was expected to make a choice now? I knew her to be a very sensible woman so I just on that strength said ," It going to be the calliper style for me "
Your insurance will probably permit a new pair of shoes every year and if you get very good ones then they will last and you will build up your selection.He took the measurements and then I asked him if I could have a couple of days to decide before he started work of making them "Sure but try to decide before the week is out as they will take about two days and I'm going on vacation in two weeks"

I called my MS friend and asked her how she really liked her AFOs.I told her I was getting them.then she told me she had tried three other styles and eventually ended with these (Calliper style)." I would never accept any others as these are the coolest for Florida." After our chat I called the orthosist and said ,Get started making my metal and leather calliper style braces."

UPDATE: Jan.11,2003 A set of braces to assist you to walking isn't as bad as
you imagine. For some reason many doctor to patients of MS in its advancing
state don't like to prescribe braces.That is full braces,they will go half way
with AFOs.
Then suggest a wheelchair once walking is too difficult.A doctor I know says
this road of not staying vertical or walking and taking up full time wheelchairing
will present more problems than braces in the long run.He further says the wheelchair
its self isn't all a bed of roses.Besides you will more than likely have
more bowel problems,more bladder infections.This is especially true for males.
He talked me out of being in a power chair and also a regular wheelchair full
time.Its ok for a break when you would be in a place like Disney all day to
use a scooter or wheelchair.

I started full braces in the middle week of Dec 2002. It takes a while to get
used to them.But eventually you get the swing of them and I'm up to doing a
mile walk.With my AFOs and crutches I could never do a mile walk for the last
several years .I was waisting too much energy with ineffecient legs and keeping
them from buckling. I feel better now that I'm getting more walking and I'm not
gaining weight.

October 5,2002 I need more data on brace wearers This is all confidential.
please send info if you are a brace wearer. RET1000@aol.com

Some stories or experiences of fellow braces wearers;
A woman about 57,post polio,recently widowed reports the fact that she though
men would shun her as a woman with braces as the turn off.The case was not so.
She being still slim and a good dresser,who took good care of herself found two
men were even showing interest in her at her husband's funeral.But she did little to encourage then then as she was still greeving.
Then one of the same men,asked her out for dinner about 4 months after the funeral
she accepted and kept the relationship cool for the evening.But then she ended
that they are still seeing each other.There last date was a ballgame of a major
league team.

A man who has used braces for only three years as a result of MS,which he was dx
16 years ago reports he finds his wife is totally turned off with his form of sex.
He uses fore play,cuddling ,kissing,tactical stimulation and other ways.
But finds she is turned off and has secretly slept with other men.He didn't
seek .

Having had a lot of e-mail concerning the using and problems with braces,be they either
AFOs or long leg braces.
I'm looking for you input.Nobody will mentioned by name.But I want to know about your physical difficulties with them,Emergencies,funny things,How they
have helped you keep
walking.Did you think of it first or did your doctor suggest it?
Example ; I just got calliper style braces .I knew nothing about their care,lubrication,
Another problem with braces comes up
or anything.The orothosist told me squat about what i might expect.
My braces kept squeaking,I tried three different lubricants,none
worked for more than a day or two.then I started to take them apart
at the ankle joint.I discovered the springwas broken and replaced it
with one I got at the hardware,it was the weekend.then on Monday I
called the orthosist.He said come out and we will fix it.
They put in a spring that was authorized for the brace and the
difficulty hasn't arose again.But I understand from those that have
written me there are many other things to do ,worry about and problems
yet to come.
I'm collecting information now and will eventually write a pamplet and
also public on this web site.I hope to also include pictures.
One individual wrote me of his sex life woith braces he has since
childhood."they really don't get in my way for sex.But with damage done in
my spine I need a bit of help to get it up and stay up.Viagra has been
a real boom to me."

I get letters all the time from people wearing braces that really have
very interesting lives.

The reason for my work is to help all who are users with the collective
genius of all of us.
PLEASE send your stories ,problems and information to me at ;
RET1000@aol.com I will reply to all who write,you know I will as always.

Richard

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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