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Charcot-Marie-Tooth UK
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It took a few weeks for my AFOs and orthotics to be fabricated. But yesterday was the day I went to pick them up. The professional recommended New Balance tennis shoes because they are well made and come in wide widths. I usually wear a medium width but purchased the wide and didn't wear them until I got to the orthotics business in case they needed to be returned. Bill, my case worker removed the insoles that come in the shoes and placed the AFO & orthotic. He said they might feel funny at first. He had me walk down the hall into a room that had a mirror that went all the way to the floor. He said watch yourself in the mirror walking. I'm so used to watching my feet because of the neuropathy I want to make sure I'm on firm ground. Well, I watched myself walk toward the mirror. It was amazing. I walked just like everyone else (who doesn't have CMT). It was heel toe motion. No more splat foot. I just couldn't believe what a difference these braces made. I came home and made laps around the living room showing off to my husband. I carried a cane just in case I needed it for stability. He said how good it was not to see me pushing the walker which I have been doing for the past couple of years. He too was amazed at the difference in my gait. Back tracking a little I was only diagnosed with CMT last year. I am supposed to gradually build up my time with AFOs starting with an hour a day. I was happy when I finally got a diagnosis. Not that CMT is anything to be happy about but I had bounced from specialist to specialist before going to a university neuroligst who identified my condition almost immediately. It just takes finding the right doctor. To end this epistle I just had to share with my fellow CMT sufferers what a di#erence thes custom AFOs and orthotics are making. I'm going out today and having my hair trimmed and a pedicure. I think my walking feet deserve pink toes!

5 Replies

Good to hear the AFOs work for you! I've had them for several years now and, as you say, the difference is amazing! You may find you get a little bit of rubbing that causes sore spots at first. The AFOs can be adjusted by your Orthotist, or you can do it yourself. I've used a hot-air paint stripper gun to gently soften the plastic and ease it out slightly where the rubbing occurs. I wear them with MBT rocker-soled shoes which mimic the rolling action of the foot when you have none naturally. This helps with gait and reduces joint strain, however they tend to be quite heavy and don't suit everyone. Hope you enjoy your new-found mobility! Best regards Malcolm


Thx Malcom


It's great to hear a good news story, Beachwine. I hope they will still be comfy for longer periods when you are used to them. The exercise from walking more fluently - and , hopefully increased distances - should be very good for your general health - not to mention your morale.

I'm sure the pink toes will help too !


Thx amanita. And stopped on the way home for Chinese take-out. A good day.

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They are the best thing ever, it took me a year to get them, after hundreds of falls over the years with drop foot. I dont wear them indoors as they are metal bases. But feel so much more confident when out and about. Enjoy your new found freedom.


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