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My Leg Braces

It was June 29, 1998 and I had been training for the "Athens to Atlanta", an 80 mile roller skating race.  A race that was going to be the same weekend in October as my 50th birthday.  That afternoon I was at Stone Mountain Park "doing laps" on my road bicycle.  One minute I was riding my bike and a split second later I was flying over a Toyota Paseo.  The kid driving the car had drifted on my side of the road and hit me head on.

I woke up in hospital with my head in traction, one arm in a cast and the other arm in a sling.  My jaw was wired shut.  My next memory was a few days later after I had had two surgeries and I was put in a halo brace.  With two bad arms and in a halo brace I was totally helpless.  Fortunately, I was highly drugged and don't remember much of that part of my post accident life.  Today it's just a blurry, surreal memory.

By December my left arm had healed and I was out of the halo.  My jaw was no longer wired but still not working correctly.  My right arm was still mostly useless and the hand had become distorted because many of the nerves that controlled the muscles in my hand had died.  I spent all of my time in bed or a wheelchair.  I had lost most of my control over my lower body and my right arm and hand didn't work.  My plumbing had a mind of its own so I was tethered to a catheter and bag.  Diapers took care of other functions.  When I tried to stand my feet  flopped about and I'd get dizzy.  

A few months later I had regained most of my bowel and bladder control and I no longer got dizzy when I was stood up.  My feet still didn't work so I was fitted with plastic AFO (ankle-foot orthosis) short leg braces and was given a special crutch to use with my bad right arm.  The plastic braces were miserably uncomfortable and I was never able to use the "bad arm" crutch. 

The plastic braces were especially uncomfortable where they came in contact with the bottom of my feet and since there was no air circulation between the plastic and my skin they were hot .  I kept a rash almost the entire time I wore them.  If I went outside I sweated thru them.   After a while I refused to wear them and decided that if that is what I needed to walk I would rather stay in the chair.

One of my doctors was insistent on me getting back on my feet so he suggested that I be fitted with metal braces.  I wasn't happy about the idea of getting more braces but I agreed to try them.  Later, I was measured for metal braces and a pair of my shoes were evaluated to accept the metal braces.

About three weeks passed and it was time to pick up the new braces.  I don't exactly know what I was expecting but when I saw them I was horrified.  They were like the braces that I wore when I was a little kid to straighten my legs.  They were only half braces though.  My first braces went all the way up my legs. I was so shocked and upset when I first saw them I felt physically ill.   At that point I decided that maybe the plastic braces weren't that bad.  At least they were almost invisible. 

A few minutes later I regained my composure and took a second look.  I first noticed that they were very shinny.   They had huge hinges on each side at ankle height and there were two metal uprights long enough to go most of the way up my lower legs.  On top was a band of leather that went around my leg and attached with two buckles.  The leather was a natural buff color and it was the first thing I decided that I liked.  My shoes had been modified and the braces were attached to them. 

While laying on the exam table the orthotist put them on me.  The shoes felt different than I remembered but my feeling in my lower body had changed.  They weren't uncomfortable but were the first leather shoes I had worn since the accident.

The braces were really comfortable.  There were four springs on each brace to keep my feet in a neutral position.  When my feet weren't in contact with the ground they were kept at about a 90 degree angle from my leg.  When I took a step the springs allowed me to take a normal step.  My foot would bend forward and backward like I was walking normally.

Although they were comfortable and did exactly what they were supposed to do, they were still ugly "polio braces".  I refused to wear them home but took them with me.  After a day or two I took another look at them and decided to try them again.  After a little practice I was able to get around the house pretty easily.  I had just had another surgery on my right hand so I could still only use one crutch. 

I got past the appearance of the "polio braces" and started wearing them every day until they no longer helped.  A few months had passed and it became apparent that the short braces weren't enough support.   My legs would go in to spasm regularly and it was becoming progressively more exhausting to walk.  After a conversation with my new neurologist we decided that it was time to graduate to long leg braces.

Another session with the same orthotist for another pair of braces followed quickly.  This time we talked about my AFOs and what I thought I needed.   I told him that I couldn't stand anything touching my knees and I liked the color of the old braces.  Otherwise, I would trust his skill and experience to build what I needed.   After a few more questions he said he had all the information he needed.

Another three weeks passed and it was time to go for the first fitting.  The first time I saw them they weren't very impressive.  They had only the metal framework and makeshift cuffs with no liners or buckles.  In order to "dry fit" them I had to take the shoes off of my short leg braces so they could be attached to the new braces.

The following week they were ready.  I went to the hospital physical therapy department and met with my therapist and my orthotist.  He had brought the braces to the hospital.  I was nervous, excited, apprehensive, and irritated all at the same time.  I wasn't looking forward getting the long braces.

When I approached the small room to meet with my therapist and orthotist, the first thing I saw were the new braces.  Except for the leather color, they looked just like the ones I remembered as a kid but they were huge!  They didn't seem so big when I saw them at the first fitting.  From the shoe calipers to the top of the calf cuff they were identical to my short braces.  But,  the uprights continued up the entire length of my legs.  The knee joints had drop rings to lock the brace at the knees.   There were also single pads attached to the inside bar on both braces just below the knee.  A few inches above the knee joints were large thigh cuffs.   The top cuffs had four straps and buckles on each brace and the bottom cuffs had two.

Again, my shoes were removed from my short braces and attached to the long ones.  I was told to lie on the table while the orthotist put the braces on me.  All of the buckles were open and the laces were loosened on my shoes.  He lifted my right leg and slid the brace under it.  He put my foot in the shoe then tightened the laces and tied the shoe.  Next, he tightened the buckles on the calf cuff then tightened the thigh cuffs.

He put on the left brace the same way.  They felt strange and familiar at the same time.  I was used to the short braces but these went all the way up my legs  to my crotch.

While I was still lying on the table he brought out two knee pads.   I told everyone that would listen to me that I didn't want anything touching my knees!  As he was strapping each pad on the uprights he told me not to worry.  I would only have to use them if there was no other choice.  He didn't tighten the knee pads.

Carolyn (my therapist) and the orthotist helped me sit up.  I spun around as he picked up my legs and turned them toward the edge of the table.  I was sitting on the table with my legs dangling off the side.  I pulled my shorts over the thigh cuffs then they helped to my feet.  I heard the drop rings fall in position and my legs were locked in place. 

My first sensation was pain.  The inner uprights caught some skin and pinched me. A quick adjustment fixed the problem.  More supportive underwear prevented it from happening again.

The next sensation was that I was about to fall.   My right arm was in a splint and I still couldn't use the special crutch.  Carolyn and the orthotist were holding me so I wouldn't fall but I had an adrenalin rush and the feeling of terror for a split second.  I was maneuvered to the parallel bars but I was only able to hold on to one of the bars.  I was told to just stand there and get the feeling of what it was like to stand in the braces.  Again, they felt strangely familiar.  The knee pads were still on the braces but were so loose that they hung loosely in front of my knees.  Carolyn tightened them slightly so I could get the feel of them and see if I could tolerate them.  She tightened the straps and soft leather pressed against my kneecaps.  I didn't like how they felt but I didn't complain.  I stood a little straighter and I felt my balance improving when my knees were secured with the pads but didn't like them.

That was all I did that day.  I was told that I wasn't allowed to try to walk with them, only stand still.

Overall the therapy session that introduced me to my first pair of long leg braces wasn't as unpleasant as I thought it would be.  Getting the short braces was a lot more traumatic.  This time I had a pretty good idea of what to expect.

One of the things that I wasn't expecting was how completely different wearing long braces is to wearing short braces.  Having hardware up to your crotch and having your knees locked in place is as different as night and day to wearing short braces.  It requires a lot more training and a lot more work to master them. 

Today, twelve years after getting my first pair of adult KAFOs (knee-ankle-foot orthosis), I'm wearing my sixth pair of long braces and using my fifth pair of forearm crutches.  I wear them from the time I get dressed in the morning until I go to bed, 7 days a week, 365 day a year.   They are just a part of my anatomy now and don’t think about them.  I don't even try to hide them any more.  Long pants, support hose, and leather can get really hot.  I decided on one very hot day that I was going to wear shorts and anyone that didn't like seeing my braces should not look at me.

My doctor is pressuring me to start using my power chair more but I've resisted so far.  The older I get, the more work it is walking with 16 pounds of leather and metal strapped to my legs.  Maybe it will be time to think about using my power chair more tomorrow...

Jack

 

steel4jak steel4jak 61-65, M 7 Responses Mar 15, 2010

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Wow! Good for you, for not giving up! Keep trying and you'll get even stronger than you already are!

I was put in KAFO'S after a tick did me in

I have been disabled since birth, so I don't know anything other than this. It's those choices you make that decide who you are.

I have been wearing AFO's since I was in 3rd grade and am 30 now. I admire your strength. Some people don't have it when they have more hurdles in life than others. "D

It's now closer to 13 years since I was injured and am doing fine emotionally. Physically, age and the accident are catching up with me. Last Friday I was at the orthotist shop being measured for a back and neck brace. I was tired of taking more and more pills to control my discomfort. The brace should make me need less medication. The brace will also improve my posture and keep my head and neck in the proper position. My feeling about it is that it is just another piece of hardware to keep me moving and more comfortable.

About two years after my injury I guess I slipped in to a real depression. I didn't think I had a problem but when most of my friends and family insisted that I get some help I agreed to do it. My background is engineering so I approached my situation from an analitical point of view. Suicide seemed to be a really good alternative to the life I had at the time. I mentioned it to some people and it scared them. Shortly after that I was seeing a psychologist. He helped me see things from another point of view and told me that I had the option to dig down deep to find the strength to continue on with what I had left and make the most of it. Or, be miserable and stay mad at the world the rest of my life.

At that point I decided that it was time to move on with my life and be a happy person. It was a struggle but I enjoyed living again.

Sometimes your situation makes you have to choose whether or not to be happy or sad. I decided to be happy.

Well I am not quite in the same shape you are except that I have a neurological movement disorder called shy-drager syndrome in which the body just shut down different muscles all over the body, plus balance, BMI urine retention and torbid colon (laxatives all the time) and leg and arm muscle that are any varying stages of atrophy. My right let I can only left about 1 inch because I do not have enough hip muscles to lift my leg and my ankle muscles make my foot drag and drop. My left leg is beginning to have similar problems. My neurologist said nothing can be done since the disease is terminal and life expectency is 5 to 7 years after diagnosis. I have been using a can but now my legs are so weak and balance is a problem I barely can walk and when I do i drag my right leg and now the left is beginning too also. I have no feeling in either leg and just minimal movement just enough to pick them up. I also have an electirical implant to control my bladder called an interstim. Although doctors say braces want help I went out on my own and purchased some new post-op braces that go from upper thigh to ankle and limit my range of motion and give support and the same time. I can walk with limp and a can and able to stand without assistance except for bathing. Still working a few hours a day and just waiting on disability checks which my lawyers say will be coming in May. I hope I can stay standing up and don't have to use metal braces and I expect I will go straight to a wheelchair or scouter. Nice to hear your story. Oh by the way I lock my braces out and use the canes to stabilze my walk and it seems to work. Thanks again... John Ellis (bookguy1950@suddenlinklnet)ll Iam 61 years old.

Hi John -

I'm familiar with Shy-Drager Syndrome. I'm guessing that you have dealt with a multitude of emotions since your diagnosis. I can tell that frustration is one of them.

I'm happy that you got a pair of post op braces. They will help keep you moving longer. If it gets to the point that you think you need metal braces look at the plastic kafos instead. My metal and leather braces have worked well for me but they are heavy. With a shoe similar to the ones in the picture above, my braces weigh about 8 pounds each. That may be more weight than you should try to drag around. A plastic long leg brace that will slip in your shoes would weigh less than half of what mine weigh. Instead of boots you can wear athletic shoes which are lighter also.

There is nothing wrong with using a scooter or a power chair. I have three. I prefer to walk most of the time but never hesitate taking on of my chairs with me if I feel like I will need it. If you are in a position to get a scooter or power chair get one now if you don't already have one. They are great for conserving energy. Trying to get around with braced weak legs can be exhausting.

I've been dealing with my mobility problem for a long time now. If you need any advice or have questions concerning mobility contact me. I'll be glad to help if I can.

Thanks for your story, i needed to read this, cause im getting some next week.

cheryl

Hi Jack,

Thank you for the very well written, inspiring and informative story!!

nanegor