Four years ago (1989), when I got my braces, I thought they were the greatest thing since sliced bread. With the foot lift and the natural springiness of the plastic I almost found myself bounding up stairs again.

However, a couple of weeks ago, while bowling for the first time in a long tine, the left one succumbed to fatigue and split across at the ankle. I was devastated. They hadn't lasted forever. Though I manage to motor around home without my braces, I tire easily without them and was worried that I couldn't cope at work.

Back home, I went downstairs to my workbench and carefully applied "Five Minute Epoxy" to the split. I did a meticulous job and was feeling quite smug as I was waiting for it to dry, until I realized that however strong the joint might be, the brace around it would still have to flex. Would it flex at the joint? Rapidly becoming depressed, I twisted it in my hands–the epoxy cracked and flaked off. The exercise had been totally useless.

I was forced to manage with only one brace. I took one stride with my customary confidence, but my other foot leapt high off the ground to clear those inflexible toes from pebbles and sidewalk cracks.

High-stepping back to Sunnybrook Hospital, I submitted to a gaggle of doctors and technicians asking those same old questions: "Had this long? Do you still work? Where did you get that cane?" We had tugs o'war with my strong thighs and my limp feet and I listened to the ohs and ahs as I demonstrated my high stepping, without braces, wearing those cute hospital shorts.

When we finally got down to business, they surprised me with a choice. I could get replacement moulded plastic orthotics. But after their evaluation, they suggested a combination plastic and steel brace with a hinge which would give them more flexibility adjusting the brace to deal with my specific problems. I had some reservations, but I thought, "What the hell, be a risk taker." Even after I had received an estimate of the price of the braces (lucky I have a strong heart and a good insurance plan at work), I still felt no more than a little anxiety about my choice.

The following Thursday, I returned for my first fitting and I had stops changed, springs tightened and pads inserted to bend my leg away from the steel struts that my ankle, on every stride, kept wanting to hit.

Running over my allotted time, the technician struggled with the fitting. The pages from the receptionist became more frequent as the technician's next appointment steamed in the waiting room. While she made the final adjustments, I made a large hole in Steinbeck's East of Eden. Finally I was declared finished. Boy, was I finished. We made an appointment for the following Thursday for the other leg.

At that time we went through the same fitting procedures. This one, of course, exhibited some new peculiarities. The plastic did not seem to be matched to my foot. If not mine, then whose? The clinic staff were going home and my technician, Carol, suggested that she would Purolator the brace to me at work the next week. Over the weekend, the first brace popped a set screw and the stop and bearing spilled onto the floor. I lost my marbles. Upset, I phoned the company that makes the brace and for whom Carol works. She wasn't in but I managed to fill the ear of a co-worker with my opinion of their quality standards. He promised to send me another screw along with my brace in the Purolator package. For now, my bearings were held in with some masking tape.

Having been away from work for a few days, I returned to find the expected Purolator package on my desk. Tearing through the tape and lifting the top of the box, there they were, my new right brace and a small envelope containing a setscrew and an allen key. I returned the pieces to the container waiting for that evening--a more fitting time to try them on.

At home, I fitted the new brace to my leg and replaced the screw in the other one. I noticed a squeak. A protest by the brace? With two strapped on, I strolled through my living room. Stumbling, almost falling, I grappled my way back to the chair. I must have been expecting too much. They were awkward, noisy, and ill-fitted to my feet. Disappointment!

After a good night's sleep, I was determined to give them a fair chance. I struggled through two days up and down stairs, all my usual walking. Instead of assisting me, they were only extra dead weight to lug around.

Another call to the manufacturer. My frustration spilled out in a torrent of criticism. I waxed poetic in my evaluation. "How do I hate thee, let me count the ways. Give me the old style, simple, non-adjustable, perfect braces."

One more appointment and I had them. I could walk! Amazing how they felt. I feel perfectly justified in being a pain in the ass. It was worth it.

The doctors and technicians are great, don't get me wrong, but only I know what is best for me.

Not off the rack
by Stanley Koelling, PA, U.S.A.

It took a good deal of time for me to find out what I really had. Doctor after doctor just told me that it was not life-threatening and I could blame it on my grandfather. Well, that was not good enough for me. What about the quality of life? I had to have a name for it.

I had my knee operated on for another problem by Dr. Robins at the N.Y. Hospital for Joint Disease. He told me that he would like me to see Dr. Gerber of the same hospital. Well, after several tests, he handed me a medical book. He said, "Read this." My wife and I did so. We looked at each other and said, "That's it." I had all the signs mentioned. I had CMT or peroneal muscular atrophy (PMA) a hereditary disease affecting the peripheral nerves. It is one of the 40 neuromuscular diseases covered by the MDA program.

Knowing what I had, I found out about the CMT Newsletter. It sure is a great source of information for me. I found out how lucky I was to come down with it in later life and not as a child like some have. I am now retired and live in the state of Pennsylvania. I go every six months for a checkup at the Geisinger Hospital in Wilkes Barre, PA.
On my last visit the doctor told me that I would probably benefit from using leg braces. He also said that I should not buy a pair from off the shelf as they would not fit right and just end up in a closet.

I was sent to the Scranton Art. Limb Co. in Scranton, PA. They made a plaster cast of my legs and moulded a plastic body around it. I am very happy with them and needed no time to break them in. They fit fine, right from the beginning. My wife says that I walk much better with them on.

I cannot express enough how thankful to CMT International I am, especially to Linda, for all the information I find in the newsletter. I wrote to the company who made my braces and asked if they would send you some information about their work. You can count on me for any service I can render.

The address is: Scranton Art. Limb Company, 317 South Main Ave., Scranton, PA 18504, U.S.A. Tel: (717)344-5026 and (717)961-3421.