ALS News Today Forums › Forums › Living With ALS › Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources
Tagged: AFOs, assistive devices, living with ALS, quality of life
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Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources
eliza replied 1 week, 2 days ago 17 Members · 37 Replies
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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?
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Hi Patty, I am not an expert on AFO’s, but I am like you, I prefer walking in barefoot or flexible shoes.
I was fitted for a carbon AFO brace that fits in my shoe, this is what have. I now regret not getting the one that attaches to my shoe.
I am not sure what type you have , but there is an excellent sporty carbon fiber one you can get, made in USA. I wish I got that. I will see how I go.
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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.
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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.
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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?
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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.
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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 !
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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!)
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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.
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After breaking my ankle and having surgery of my right ankle ( the good leg) ,my left ankle was giving way when walking with my rollator. Both legs and body had weakened due to lack of exercise during surgery recovery.
I had a carbon fibre AFO fitted with a inner orthotic, hoping this would stop me falling. Firstly I found it a struggle to put on. I then practiced walking with the AFO, ( but without the orthotic insole) I felt safer knowing that my ankle would not give way and my foot drop would not be an issue, however my legs and body are very weak and distances short. ( around the living room several times.) On my last trial I inserted the orthotic, my foot felt alien , I walked a little and then fell, my quad gave way.
I have now stopped walking as I dontt want to fall anymore. I thought if I can regain more leg strength I will try again.
I am walking in the pool several times a week, seeing a physio twice a week, for back/core strength. I have just got a recumbent exercise bike and work on that when I can. If anyone has got exercise tips for leg strength, let me know.
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