Moving one step at a time and here is part two. I spoke about my orthotics just the other day and now I want to share with you a little about my AFOs. Well, here is another picture of my foot to start off with. I showed you the side view and how much of an arch I have on my feet. With CMT it is common to have really high arches or completely flat. My toes are the other issue with my feet. I have the start of hammer toes. My little toes have almost no toe nail and it’s really hard to cut because my toe wrap up around it. My middle toes have been curling a lot more. My feet are about a size 9 US woman’s shoe and I suspect if I were to have surgery They would be a 10 at least just from lowering my arch. If you can’t tell I really need to cut my toenails. Lol. I always wait until they are pretty long because I find it easier to cut them. My boyfriend is amazing though and cuts them for me because he is such a sweety!
Now on to my AFOs. I have had a variety of AFOs (ankle foot orthoses) over the years. My first pair were in high school and there the hard white plastic that covered the whole back of my leg, ankle, and bottom of my foot. These did not work for me. They made my achilles tendons hurt really bad because my foot was fighting the AFO since I am still pretty strong. The second set of AFOs that I had lasted me two years and were Carbonfiber Blue Rockers which are prefabricated and given to me off the shelf and had orhotics that sat on top of them. My current AFOs pictured here are called Noodle AFOs and these ones are fit specifically to me. I love these new ones. The cuffs at the top have foam padding on them against my leg and the rest is just made of carbonfiber. My second favorite feature is the straps. These straps have foam padding on them to go against the back of my leg instead of just velcro like I had before.
Overall I really love these AFOs because they help me to be more stable when I walk and they help to prevent me from dragging my toes while I walk. They also help to prevent me from slapping my feet down hard when I walk. The only downfall to wearing them is that I always have to readjust when it comes to driving because pushing the pedal feels completely different without them than with them.
I am curious what do you all think? Would you like to see videos of me walking with and without the braces as well as see what sort of movement I have left in my feet?
Ashley
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I am curious to know if the disorder is designated to your legs or affecting other parts of your body as well? Is it painful? I read that the nerves are damaged and that you lose sensory feeling, but the pain receptors are in full force? This is the first I heard of this disorder. I thank you for educating me/ everyone about this.
Jenny it is a complicated and not completely understood disease. It does affect other part other than my legs. I may do another post about my hands. My hands are rather weak and do not have all that much muscle to them. There are some muscles in my hands that I do not recall ever having. For instance that muscle pad in the webbing between your thumb and pointer finger is non existent for me. As far as pain goes that varies upon the day, weather, and activity level that I have been doing. This also varies between people. I get a lot of neurological pain where I feel tingling, burning, and shooting pains sporadically in my arms, hands, calves, and feet. Much of the pain that is felt as it progresses is the nerves not knowing what is going on and just send out random signals. Doctors know its not real pain by doing little tests closing my eyes while the poke me with little pointy objects to see if I can tell where they are touching. I still have places I can feel and other places I really can’t feel. There are some people who have CMT that you might not know about for instance, Julie Newmar (catwman), and Todd MacCulloch basketball player for the 76ers in s’03-’04.
It is very interesting to me. I am so happy that you are able to do live a normal life and deal with it. I am interested in learning more, and I am 100% certain that others who have CMT would appreciate hearing about/ reading your posts and stories!! I am proud of you and grateful for the education. Looking forward to more posts from you. 🙂
You new AFO’s look so much more comfortable. I am all about comfort these days!