ALS News Today Forums Forums Living With ALS Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources

  • Patty

    November 22, 2022 at 2:41 pm

    I am considering an afo due to foot drop. I walk better barefoot than withshoes  and a brace to hold my foot up attached to shoe laces of tennis shoe. Its more difficult to get standing from sitting on a chair with the shoe . With afo how difficult to get from sitting on a commode to standing?

  • Dagmar

    November 24, 2022 at 11:53 am

    Hi Patty, I also walk better barefoot (better sensing of balance from skin’s direct contact with the floor), and, I walk better with tennis shoes on around the house than with my AFOs. But I do wear my AFOs going out if I need to avoid foot drag or if need to walk longer distances. (in my case I also use a walker with wheels)

    The restriction at the ankle joint make sitting and standing up again harder. I rely on grab bars in our toilet area. If you don’t have them yet… do have them installed.

    Also remember to keep your leg muscles strong via exercises when not wearing your AFOs.

  • Bill Corrigan

    November 24, 2022 at 3:06 pm

    also get a toilator for your toilet. The plumber has to install it. Gives you four inches of additional height.

    ive been wearing my afos for 9 months now as my legs continue to get weak. I can’t walk anymore. I can muscle myself around with arm shoulder strength as so nothing of ALS above my hips.

    my shins get sore from foot drop. The AFOs hold them in place.

    I wish I had something I could wear while sleeping.

  • Elaine Atchison

    November 24, 2022 at 4:22 pm

    They recommended I get an AFO for both legs but I am concerned about falling with them on and backing a bone or two. Once I loose my balance backwards, I fall..Has anyone fallen with them on?

    • Dagmar

      November 24, 2022 at 4:30 pm

      Elaine, I would think that while wearing an AFO on each foot you would be safer to also walk with a walker with wheels. It may seem cumbersome at first, but it does provide stability. AFOs after all, immobilize your ankles, which are important to maintaining balance.

      Maybe with one AFO you can walk independently… but with 2, avoid falling by using a rollator.

  • Kathleen B (Katie)

    November 30, 2022 at 7:55 am

    My AFO’s are custom fit, by an Orthotist recommended by the ALS Clinic, shortly after my May 2021 diagnosis. They are officially called ‘Blue Rocker’ AFO’s, very lightweight, and came with a liner (removable & washable) as well as 2 11-14” soft strips to fit inside AFO either side of where my shin bone is—thus keeping my shin from ever rubbing! Yes—Orthotist showed me in very beginning all these things—even before it was needed, but the clinic referral for Neuro OT & PT has done EXCELLENT keeping me informed and adjusted in moving along in use of AFO’s. From May-Dec ‘21 I would wear only left & leave right at home & drive & manage my own walker in & out of car!  I felt safe and capable being independent!  Of course, nothing ALS stays the same, and after R leg started weakening & 1 fall with friends, I started wearing Right AFO—it just MUST BE loosened to allow foot move to drive (it was just too difficult for me to arrive somewhere & need to wrangle on the AFO).  Then, more progression, driving out. Needed both on & off during day at home—even using rollator walker for safety—and now they are THE ONLY way I have any stability at all to stand and transfer, move on & off specific chairs. I use power wheelchair for all things outside home—and have AFO’s on so I can use bathrooms (with companion help too). Progression of leg weakness has steadily persisted (not able to tolerate Riluzole). My PCP helped with toe curling—I will put that tip in next message !

  • Kathleen B (Katie)

    November 30, 2022 at 7:56 am

    The suggestion from my PCP re: toe curling: try using those ‘corn relief’ little pads…buy a couple packs, stick 2 pads together (the 2 adhesive surfaces together)  to create a small, 2 soft-sided pad —and place this pad between your toes at bedtime—starting with space between smallest toe & ‘ring’ toe, then next 2 toe spaces. So, 3 ‘toe spacer pads’ in place on each foot for 8 hours or so and I have had no more toe curling of either foot in 3 months! I have never had them fall out over nite, nor have I noticed them—but, like others have said, it seems to be doing something good for my toes & feet & it is safe & simple!  (I have no core strength to get them in & out on my own pm or am, but my husband has no problem helping because he even sees the difference in my toes!) Hope this helps someone else —both ALS clinic physical medicine Dr. and the PT I work with thought it to be a nice solution to share with others also. And, in case it matters, I do have full sensation in my feet still (no neuropathy or other issues)…and I do toe & foot exercises still, with and without the resistance of the covers am & pm as well.  I must do seated exercises for safety reasons, but it’s working for me—even with AFO’s on & using a ‘leg lifter’ I can get stretches & knee bends done.   Yes—it is a work out—but I do fewer reps, at more frequent times during the day, so there is less fatigue from what I used to call ‘exercise time’ (once daily, 20-30 min scheduled slot, plus housework/yard work workout!)

  • Dick

    December 24, 2022 at 5:59 pm

    Very interesting discussion. I was fitted last week for an AFO at a local clinic Kaiser referred me to.

    I get the orthotic in 3 weeks. My left foot drags or drops when I walk. Hope it helps.

  • David Rothschild

    February 6, 2024 at 2:11 pm

    Billy shoes make AFO use much easier

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