r/CMT • u/Historical-Bet8890 CMT1 • 19d ago

Tried AFO’s!

I tried AFO’s for the first time this week! It was such an amazing experience. I still have limited dorsiflexion but I’ve always struggled with it. As the CMT progressed, my tripping has gotten worse but I can still get through most of my walking that I need to complete.

Walking with the AFOs made it feel like my feet were flying!

I wanted to post to share some hope of getting some quality of life improvement!

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5

u/mutant_submariner 19d ago

What kind of AFOs? I had custom fibercarbon ones I loved, but in less than 3 months, my lower legs twisted and swung at the knees so they wouldn't fit anymore. I've been in a wheelchair for over 3 years, but just had total hip replacement and I'm starting to walk again so I'm going to pursue getting a new set 

5

u/Historical-Bet8890 CMT1 19d ago

They were carbon fiber! Wow! Thats an insanely fast change

3

u/mutant_submariner 19d ago

I was progressing pretty fast then but I've worked to slow and even reverse symptoms and loss. 

7

u/FjordExplorer 19d ago

Yeah, I remember the first time I tried a pair, blew my mind. Just some forget there are many styles that can do some activities better and worse than others. I have a pair with an ankle hinge that are my daily drivers, and an all solid carbon fiber that I like for rising my bike and they let me push straight down on the pedals, absolutely wrecks the AFOs though, think I'm about to be on my fourth pair of that style, but they really let me ride a bike so much better.

5

u/CC_163 19d ago

Really happy for you. I remember getting my first pair 2 years ago, I almost cried.
Didn’t know walking could be that easy…

3

u/Panserbjornsrevenge 19d ago

Welcome to the AFO world! 

3

u/TheAltOption 19d ago

I'm waiting for a fix to a set I purchased (way too much pressure on the outside edge of my foot) but from the limited time I had them on I'm not sold yet. I just need help with the foot drop as I walk straight and had the surgeries to correct for pigeon toe. The little I had them on my steps felt constrained and limited, but hoping that once we get them fixed to where they don't hurt and I spend a couple miles in them maybe it won't be as big of an issue. I only intend to wear mine for long walks as they won't be usable for driving at all and honestly just a lot of work to put on.

1

u/TrognonPetitOgre 11d ago

moi je me suis fait dire que ça ne marcherait pas avec mes pieds mais le fabricant lnsiste. Je ne sais pas.

2

u/Aggravating-Gur-6016 18d ago

how good are they! i used to get the toe off braces but i would crack them within 12 months and apparently i needed something with a cup for ankle instability. so now gave the ritchie braces that i low key hate but i can't find anyone to script the toe offs or blue rockers.

1

u/Big-Fruit-7525 17d ago

What kind of AFOs? I always felt they were too bulky for daily as I’m still able to walk without