Struggling with CMT and balance

Shaquille.oatmeal

470d

Hello! So how do you guys manage to not fall down constantly with CMT? I am getting older and it's to the point where it hurts a lot worse than when I was little. It's also super embarrassing. I don't necessarily know if this has to do with my foot drop or my CMT, but I'm sure they go hand in hand. Thank you!

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ֹCharcot Marie Tooth Disease (CMT)

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    • Dreamangel49802

      459d

      @benz that's right❤️ I wear an AFO consider it a blessing

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    • benz

      470d

      Hi!! I struggled for so long w falling down ALL the time (it is very embarrassing) mostly bc my drop foot always caught me up. My neurologist kept suggesting leg braces and I was stubborn my whole teen life into my twenties and didn't want to look weird so I never got them until about two years ago I had AFO's custom made for my legs/feet and I haven't fallen once w them on. They go behind my calf and under my foot to keep it up and they're actually not that unattractive. Hope that helps!!

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      • Shaquille.oatmeal

        470d

        @benz thank you! I had an embarrassing fall in front of my brother in law today and I'm over the scrapes and cuts. My nephew has a condition and he has to wear AFO's! I'll look into it! Thank you!

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    • benz

      469d

      I've torn so many pants and gon all day w embarrassing bloodied knees and you can laugh it off when it happens but the shame never lessens. We have to try and help our bodies get by however that is and be loving and patient.

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      • Shaquille.oatmeal

        469d

        @benz thank you for your advice! Yes, I tore my favorite leggings yesterday and got a nasty cut right on the front of my ankle, so not the side. It hurts so bad and of course everyone thinks it's funny 🙄. How much did you end up paying for your AFO's? And if you don't mind me asking, what insurance do you have? I can't find any good insurance after getting off my mom's medicaid

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      • Dreamangel49802

        459d

        @benz that's right❤️ I wear an AFO consider it a blessing

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        Reply
    • benz

      469d

      health choice was my old one that paid for them in full, they were a thousand each and after I got on disability finally they gave me Medicare w it which covers 80%

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      • Shaquille.oatmeal

        467d

        @benz oh wow, that's expensive lol. Thank you for the info!

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    • FunnyFeet

      464d

      I have worn several different types of AFOs in my journey to find the right kind. My current pair have been the best. They are called “The Noodle” and are made in Tampa, FL. They assist me the best as I have more range of motion than most. Blue Rocker is another great option but was too restrictive for me. Both ran about $600-700 for each brace after insurance. I’m on BCBS.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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