Tips for a New AFO User?

emberkid

I’m being fitted for my first pair of AFOs next week, and I could use any tips or insights other users have for making the most of them.  I’ve never used any kind of mobility device before, not even temporarily, so I’m very new to all of this.  A few questions that come to mind include the following:

Mine will be carbon fiber rather than plastic.  Is there anything specific I need to be aware of in terms of their care and maintenance?

I’ve heard that the straps wear out easily, being made of Velcro.  Do I have to go back to the orthotist for replacements when this happens, or can I get or make new straps elsewhere?

By how much should I increase my shoe size, and what kinds of shoes are most and least beneficial to pair with AFOs?

Will carbon fiber cause issues with metal detectors?  I’ve read that it can set them off.  I’m traveling by plane next month, and I don’t want them to cause trouble with security.

What should I use to pad the foot plates with?  I’ve tried out carbon AFOs briefly with my orthotist when he was evaluating me, and they weren’t terribly comfortable to stand on.

That’s all I can come up with for the moment, but if anyone has any tips or advice that I didn’t ask about, I’d be grateful to hear from you.  Thanks everyone!

Alex_Alumni

Hello there @emberkid and thanks for posting your questions here. I haven't used AFO's since childhood, so I suspect they've changed a bit since then.

For your second question I would encourage you to contact the orthotist for any concerns, as well as for any questions around care and maintenance. From what I remember of mine, where the velcro was affixed to the plastic, it would sometimes start to come loose, but I think we used to just use super glue it back! Probably not the best way to go about it. 

I never wore shoes with mine, as they were more for short-term stretching, so I'm afraid I can't advise as to a shoe size to go for. Likewise, I never walked in them, so I can't advise as to padding either I'm afraid. Hopefully other members can shed some light for you. 

I don't think the carbon fiber would make the detector go off in airport security, but even if the detector goes off, you wouldn't be causing any trouble. Have you booked any special assistance at the airport at all? 

I do know we have a few members who use AFO's including @Wibbles if I remember rightly? 

Let us know if we can help with anything further

Alex

emberkid

Thanks for the input Alex!  I’m traveling with my girlfriend, and she is arranging airport assistance for us, primarily because we’re both autistic and have trouble with crowds and sensory input.  I’m sure TSA deals with mobility equipment not infrequently, so I doubt it will end up being too big a deal.

I’m meeting with my orthotist again next week, so I’ll be sure to ask about the straps and padding, as well as the shoe sizing.

L_Volunteer

You are welcome @emberkid. It is the very least you deserve. 

Good luck with arranging airport assistance. Hopefully, it will help things to feel more manageable for you and your girlfriend.

Good luck also with your meeting with your orthotist again next week. Please feel free to let us know how it goes. 

We are all here for you, even if that is just as a listening ear 

Poppy_

Hi, how are you?
 I haven’t had AFOs since I was a child, and were plastic, but from what I remember, airports weren’t that much of an issue, my bags put through the item scanner and I was given a metal hand held scanner, instead of going through the walk through one and my chair was wiped. Shoe wise, for AFOs, I needed a bigger size, for the width, and I wore converse type shoes, although this has progressed some, with the introduction of the Nike fly ease, which were designed for accessibility and different foot aids, so they open wide to allow for easy putting on/off of the shoe and some have zips, which from what I have heard, are great for using AFOs with, although they are expensive. I do remember having to wear orthopaedic shoes, as I couldn’t find a pair that worked with my AFOs, at one stage, so this may be something to look into with your orthotist, if you can’t find any shoes. With AFOs, I avoided shoes that would make it difficult to get them on and off, like boots. As I haven’t had carbon fibre, I cannot answer the foot pad issue, however, all my plastic ones did have padding in, some had more padding then others, so it may be worth discussing this with your orthotist. With AFOs, it is beneficial to wear long socks, as they can create marks on your legs/feet with the straps. 

I hope this helps. 

emberkid

Thank you Poppy, that's very helpful information!  My orthotist has said I can slide the foot plates under the insoles of my shoes, but this doesn't help when I'm not wearing shoes, and means I have to disassemble the shoes every time I have to put them on, so I'll ask about padding when I see him next.

Wibbles

I have a carbon fibre KAFO - Supplied by NHS

It is heavy and hard for me to put on myself (read impossible)

A KAFO is full length (from footpiece to thigh)

I wear a 2 sizes larger training shoe on my left leg which the foot plate fits inside

I very rarely wear it - instead, I am trying to improve my mobility by Physio/PT

I am disappointed with my KAFO - considering the difficulty and time in obtaining it

I am unsure whether they are supposed to be worn without any shoes - with carbon fibre directly on the floor ?

They do recommend a stocking / tights to protect the leg from rubbing from the straps - my straps do cause bleeding through friction

As an option - try Strappy sandals - they are quick to get on and off - if you can get the right size.

emberkid

Thank you for the input Wibbles! That's very helpful!

I heard from one physical therapist that a KAFO can't do anything special that an AFO can't do. I don't know how true this is, because I only heard it from one source, but has your PT ever suggested trying an AFO? Just curious.

I will definitely check out those sandals, I've been having trouble finding any that look suitable for pairing with a brace, thank you for the recommendation!

JOHNO5555

Hi my name is John I'm new to the group I've been wearing plastic AFOS now for 4 years and now I'm having problems with pressure SORES and ulsers on my foot I've been told to go for CARBON FIBRE AFOS I live in the REP Ireland and the HSE don't give a grant for CARBON FIBRE AFOS so I went private they are costing me 2000 I was told they will help with my pressure ulser problems and are alot better than the plastic heavy bulky AFOS

If anyone knows of funding for CARBON FIBRE AFOS in the REP Ireland it would be great and also did you find the CARBON FIBRE AFOS better

Many thanks

John