Taking a Huge Step in My Journey With Charcot-Marie-Tooth Disease


Today I took a huge step in my journey with Charcot-Marie-Tooth disease. I finally agreed to get fitted for AFOs. I am not really sure how I feel about this new development. I know the benefits of the AFOs and I know they will help, but I still am not 100 percent sold on the idea of wearing them. It sounds vain, but what will others think if they see me with leg braces? I know what they think should not matter, and what they say should not impact my choices, but some level it does. I know it should not impact my decisions, but it does.

I saw my neurologist in October and finally agreed it may be time to think about looking into AFOs. This was not the first time he brought up the need for AFOs. It was the first time I did not respond with “but I am not old enough.” In my mind, I know it has nothing with age and everything to do with the progression of my disease. The doctor was understanding, and suggested I just go talk to an orthotist to see what is out there.

I finally agreed, because keeping my balance while walking is getting tougher and it is getting harder to keep my ankles from rolling.  My doctor suggested that AFOs may actually make walking less difficult and not as tiring. I figured it was worth looking into, as much as I have anxiety about the whole idea. So I took the prescription with me when I left the office. This was a big step for me, in many ways.

Now I had this prescription in my hand and I had to decide what to do with it. Do I just take it home and let it be? Do I look into clinics that make AFOs? I decided to look into what my insurance would cover and what the cost may be. I knew if it was too much, that was my out. But my insurance covers them 100 percent, so that excuse was out. Now what to do? I looked online for places near me; maybe there would not be a clinic near me. Nope, that excuse was out; there are about 10 clinics nearby. I was quickly running out of excuses as to why I could not look at getting AFOs. I guess I needed to choose a clinic and make an appointment. That was not so hard… OK, it was really tough for me to get the courage to call and make that appointment.

Now I had an appointment at the Hanger Clinic near me. I chose them because my dad uses them and I had no reason not to. I was nervous and unsure of what to expect at the clinic. I knew I did not want clunky, plastic looking braces. I was not going to be talked into something I did not want. Some people gave me some advice on what type of questions to ask and what to look for.  Armed with questions and my trusty notebook to take notes if needed, I headed to my appointment.  To say I was anxious and really uncertain would be an understatement.

My anxiety was instantly put at ease; the staff was helpful and kind. The orthotist was really nice and helped to ease my mind. He asked basic questions and watched me walk. He then began to use medical terms I did not understand. When I asked what he meant, he explained without any hesitation. That made me feel more comfortable. He talked about what he thought would work for my needs. I told him if they are they big plastic bulky braces, I was out. That was not going to happen, no way. I was not going to do that.

He smiled, and told me there were many other choices. He also said he tends to use carbon fiber more than plastic. I agreed to look at the different models. I even tried on a pair to see how I felt with AFOs. It felt weird to walk with them on, and they were kind of heavy, well heavier than just a shoe. I could tell I was walking a little better, but was still not convinced. I did not like how bulky the front piece that goes over the shin was. I do not want something that bulky and big on my leg. I have to be comfortable with this whole thing, right?

After talking and looking at few other samples, we decided a custom made AFO would probably be the way to go.  He casted my feet and was able to get both ankles pretty straight. He is confident he can do the same with the AFOs. He may want to add an ankle stabilizer, but we’ll see what is needed when the AFOs come in. I did make sure the front piece was not too big and the whole thing was not too bulky. I resigned myself to allowing him to make the AFOs. Of course I had to ask, “What happens if I hate them?”  He smiled again and said, “I will do what I can so you do not hate them.”

Now I wait four weeks for them to come in. I have four weeks to figure out how to deal with the whole idea of wearing AFOs. The next step is to come to terms with those voices in my head saying “what will others think?” “How will you get shoes?” “What will it look like with shorts or skirts?” Then there are the other voices saying, “if they have an issue, then they are not true friends.” “If it helps, then just do it.” “I do not need to wear them all the time, even the orthotist said so.” Maybe in a few weeks, I can come to terms with all those little voices in my head. I think the biggest issue for me is how to handle the looks, the stares from others. I am learning not to care, but at times I still do.

I know AFOs will probably be a good thing. I just need to deal with the anxiety and vanity issues they bring up.

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Getty image by Teerhawat Wenyerat.

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