AFOs: Kate’s Story

Hello! My name is Kate Heximer. I am a friend of Laura’s who also has CP. Laura has asked me to write a post about AFOs as she has been getting a lot of questions but has no personal experience from which to answer them. I wore AFOs until I was 15. I am now 26, so have spent a fair amount of time not wearing them as well. In this post, I will offer some basic information as well as some personal insights. As Laura always says, please keep in mind that the opinions and stories told here represent MY experience only and are not meant to be a recommendation or tell you what to expect in your child’s future. Believe me, THEY will tell you how they feel about their AFOs in whatever way they are able.

What are AFOs?

AFOs or Ankle Foot Orthotics are full-leg leg braces which control the position of the foot when walking and may correct deformities. As a child, the type of AFOs I was given became more and more heavy and restrictive because it was felt this was required to correct the deformities of my foot and prevent the banana shape or pronation that my feet were taking on. The AFOs did not correct the deformity of my feet, which today remain very flat, skinny and with odd looking toes that curl inward and separate with great difficulty. That being said, there were some benefits.

The Positive Side of AFOs

Let me think… well, this will be a short section!

Just kidding. As a child, I enjoyed the process of getting fitted for AFOs somewhat. My parents were not all that into letting me get colours for the casting as some of my friends’ were, but they did let me decorate them with stickers. I also thought it was cool that although my actual feet were very small I got to wear large size shoes that were in fact bigger than my sister’s at one point (she is 6 years older than me). Although I did not recognize it as a kid, AFOs were definitely what made me able to walk using a walker for medium distances without pain.  I was able to move faster and step in a more controlled way. With much work, my foot dragging was reduced to a minimum thanks to the AFOs. After I stopped wearing them in high school, I continued walking these distances for quite some time, but it became increasingly painful and slow, until finally a physiotherapist advised me to give it up and to walk only to maintain the ability. She recommended that I could exercise in a way that put far less strain on my joints using an adaptive bike or a recumbent elliptical trainer. These exercises keep me in shape and I am less fatigued than when walking.

The Less Positive Side of AFOs

To be brutally honest, wearing AFOs was one of the things I most hated about having CP as a child. They are hot, especially in summer, and caused me a lot of pain especially after a long day. In high school, I also began to hate that my new and most clunky pair of AFOs to date restricted me to wearing ugly skater shoes that were intended for boys. The last pair of AFOs I got caused me more pain than ever before and routinely cut off my circulation. After some debate, and to my great delight as I had been begging them for years, my parents decided I could stop wearing the AFOs if I wanted to. I only put them back on once since, to see how it would go. Or rather, at my request, my dad tried to put them on and could not. This was because my ankles had tightened up so much that they did not fit. So I guess in some ways if you want AFOs to work, the worst thing you can do is stop wearing them. However, this was before I had taken up biking, which according to those who help me put my shoes on (attendants and parents) has done wonders for the tightness in my legs and feet. It has also made the walking I still do far more enjoyable.

To conclude this post, I would like to say that I understand why parents may be concerned if their child starts to resist or stops wearing AFOs. The best advice I can give you is to help them find enjoyable fitness activities that will help them maintain function and flexibility. Perhaps your child’s preferred mode of movement will change, perhaps it will not. Life with CP, whether with or without AFOs, can be full, fun and healthy!

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