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Ankle-Foot Orthoses (AFOs): Your experience?

Neuropathy | Last Active: May 13 4:58pm | Replies (16)
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@jlharsh

Hi Ray, nice to “meet” you.
I checked out your profile and see you have an axonal polyneuropathy diagnosis. Is this what is causing your problems? I do not know anything about it so not quite sure if I am of any help. I do however, sleep in boots that keep my ankles in their neutral, 90 degree angle position at night. My PT recommended them several years ago. I couldn’t wear them more than maybe one hour the first night I had them, I remember it was horrible. I have been super consistent with wearing them and PT exercises since. I won’t give them up because I know they help my entire body function better (including my balance). They go everywhere with me now.

Are you thinking daytime support, or maybe your PT thinks something like sleeping position may help? It’s crazy what our bodies decides will help.

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Replies to "Hi Ray, nice to “meet” you. I checked out your profile and see you have an..."
Ray Kemble | @ray666 | May 9 4:24pm

Hi, Janelle (@jlharsh)

Thanks for getting back to me! My Connect bio may simply say "axonal polyneuropathy;" however in the years I made that bio, my diagnosis has grown more specific: idiopathic large-fiber, sensory predominant, polyneuropathy. I'm lucky in that I have no pain. My one and only symptom is poor balance––balance that could be worse, far worse.

The reason I posted my question about AFOs is others on Connect whom I've gotten to know over the years and whose one symptom is a match for mine have mentioned AFOs. A few of those I've spoken to tell that AFOs might be worth looking into if I notice my balance getting worse.

Frankly, I'm not sure it's getting worse; I have good days and less good days, good times of day and less good times of day. IN any event, I thought I'd arm myself with some understanding of what AFOs are and if others have had success in wearing them. Up until now, no one (to include my PT) is advising I get AFOs.

I use a cane, but not everywhere: in familiar settings, I'm fine going about without my cane Should it be determined that my balance is getting worse, then I'll phone my orthopedist and ask if his office is able to outfit me with AFOs.

Again, Janelle, thanks for your reply!

Cheers!
Ray (@ray666)

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