Maintaining ankle range of motion with muscular dystrophy

In the spring of 1986, my doctor told my parents and me that one of the standard prescribed treatments for muscular dystrophy was splints, which I would wear on my legs to keep my heel cords loose and limber. The doctors wanted my ankles to reach a 90-degree bend, so I wore thigh-high casts for eight hours a night while I slept.

The removable, fiberglass splints were custom-made from molds of my legs every six months. I was 13, still growing, and about eight months post-diagnosis.

During this period of my life, I also wore braces to straighten my teeth. My adolescent brain quickly invented a contest to determine which would be worse: metal on my teeth or mummy wraps on my legs. My splints weren’t even made yet, but I knew I would hate them. That was my attitude going into their production.

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Weeks later, my parents and I went to the casting appointment. First, my legs were wrapped in cotton. Then, technicians dipped rolls of cream-colored fiberglass into hot water to activate the glue. Next, they wrapped the rolls over the cotton from my feet upward, making circles around my legs. At times, the water would seep through the cotton and run down my thigh (if they were elevating my leg) or to the stretcher below, which was cold and uncomfortable.

Once my legs were wrapped, one person on each side would hold them flat and outstretched, with my ankles at 90 degrees. I kept my legs as still as I could for the 20-3o minutes while the fiberglass cooled and dried.

When the molds were dry(ish), the team used a casting saw to cut each side from top to bottom. After the fiberglass was removed, I had patches of cotton stuck to my legs, between my toes, and on my feet. Cotton was peeled off, and my legs were washed.

I had to return a week later to pick up the finished products. The team added moleskin and cotton inside, as well as removable straps with metal clasps located at the ankles, knees, and upper thighs. This is how I would buckle in at night and take them off in the morning. It was then that I decided that I hated them, and I hated having muscular dystrophy.

During the summer, I had a box fan blowing directly on my legs. The fiberglass was hot, and it made my legs sweat. Sometimes, in my sleep, or through tears, I would undo the clasps, take both casts off, and drop them gently to the floor next to my bed. I hated them. I knew they were helping me, but I didn’t have to like it.

A change in perspective

My attitude improved in adulthood when I learned that years of wearing my night casts had helped me maintain range of motion in my ankles. In my 20s and early 30s, with assistance from others, I could still get my ankles to 90 degrees. I decided to have a physical therapist evaluate me for adult splints.

I now have rigid ankle-foot orthoses (AFOs), which are kind of like knee socks. These babies are one part, made of hard plastic, and don’t cover my shins or lower legs. Progress!

In 1986, the fiberglass splints were one color: beige. Today, just for fun, my AFOs have Spiderman decals on them. I usually wear them while watching television. I’m now 41 years post-diagnosis, and the range of motion in my ankles is still 80 degrees.

Time and again, I have learned that life with muscular dystrophy is a marathon. It’s not a sprint, though it may be a splint.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.