I have had to wear AFOs since 2002, although I wasn’t able to begin walking again until 2004. Mine are rigid at the ankles, so it does limit my activities, but I do walk (albeit somewhat limited,) & I do water aerobics as often as I can. If you could get by with the “hinged” ankle braces you would be able to do so much more. I too was on steroids, weekly 1,000 mg infusions for 21 months back in 2002-2004. I went from 136# to 216# in that time frame, but the nurses kept telling me that once I got off the steroids the weight would fall off. Not true, I have had a weight problem ever since then. Keep losing & gaining back the same 30-50#. I have to literally starve to lose weight, as my mobility is impaired. Fortunately I have been happily married for 36 yr. but there are nice men out there, & 30# is nothing nowadays.

The main question is why do you need the AFOs? Do you have total or partial foot drop? If so, then that is probably why you are wearing them. I have been wearing mine for over 5 years now (couldn’t walk 6 & 7 years ago at all), & have almost total foot drop. The one time I tried walking without them, just from my bedroom to the bathroom, I fell & broke two bones in my feet. Aftet two years out from either GBS or CIDP, it is pretty rare to get any nerve healing back.
Pam

I got CIDP at age 48 & severe foot drop with it. I didn’t want to have to wear the plastic AFOs (still don’t), but it’s either that or stay in a wheelchair. I gave away all of my tennis shoes, dress shoes, etc. to my home health care nurse when we moved; that was a hard thing to do. I miss wearing sandals in the summer, but I do swim with water shoes over my braces. I guess for me it’s all about quality of life, & the AFOs do give me that. The second pair I got (lost a lot of the weight I had gained on steroids), I ordered in flesh color. In the summer I buy flesh colored socks to go under them & you can hardly notice them when I wear shorts.
Pam

I don’t have your same problem, as I need AFOs for both of my feet. But when I first got them, my orthotist sent me to a special shoe store, saying that only they would be able to fit me with shoes. I ended up paying $115 for a pair of plain black tie shoes. I soon realized that the braces gave me all of the support I needed, so now I buy the cheapest shoes I can find, usually at Payless for like $12.99 a pair. No sandals for me, however.

BTW that doesn’t seem to be such a slow recovery for GBS…

I am so glad that Nate is finally getting his AFOs, or one for sure. I have been wearing them all of the time now since Nov of 2002, even though I didn’t begin walking until July of 2004. I quit walking on April 27, 2002 & was in the hospital for 3 months after that. They made me wear these awful metal type braces to try to keep my wrists up, but never addressed that my feet wear very quickly developing foot drop. Sometimes I wonder how my feet would be today if they had made me wear some kind of splint or brace on my foot when I first became ill…

Sue,
AFOs aren’t limited to people with neurolgical problems, anyone with foot drop (the inability to lift one’s foot up when walking), is a candidate. It sunds like your father could benefit from one if he seems to be dragging his foot. And yes, most rehab centers do have generic ones to try, so that you could see if it helps him. I know at Mayo they had them…

I have terrible dropped feet & have had to wear AFOs since I began walking the summer of 2004 (got CIDP in March of 2002, but was in a power chair all that time.) Even with the AFOs, I have broken bones 3 times in my feet. But the last time, Sept 4th, I had tried walking to the bathroom without my AFOs, broke my big toe & the one next to it. Now I know I can’t walk at all without them. I just got new ones, & got the flesh colored ones, fitted by an orthotist at Hangar. In the summer I will just wear flesh colored socks with shorts, when I dress up, I wear an extra pair of thin black nylon socks over them, can’t even tell I am wearing them that way.