April 30, 2019 at 8:56 am #11732
Do you wear AFOs (Ankle-Foot Orthosis or Foot Braces)? Orthotic bracing can help stabilize a weak leg and/or ankle and there are many variations that your doctor or physical therapist can choose from for you to wear.
My AFOs help me walk into restaurants, attend meetings, and get out and about. They help me continue to participate in life and focus on my projects. But it took me about four months of mental, emotional and physical adapting to accept my AFOs and learn to live with ALS. I share a humorous look back at those four months in my recent column How My AFOs Helped Me Learn to Live with ALS.
What have been your experiences? We would appreciate your tips or resources that have helped you. Feel free to ask if you have a question – – this forum is here so we can support each other.
May 1, 2019 at 11:50 am #11780
Early in my diagnosis I requested a brace clinic. At the time I could walk unaided although my gait was spastic and “Frankenstein like”. The braces which were pulled from a shelf of try insurance did not seem to help. I now use a rollator or forearm crutches and move at snail’s pace . I attend clinic tomorrow an will definitely revisit the AFO armed with your post, Dag Mar.
May 1, 2019 at 12:12 pm #11781
Any tips for coping with autocorrect? Just read my previous comment and it’s a bit incongruous.
May 2, 2019 at 10:38 am #11793
i have worn an AFO on my right foot since May, 2018. My spine surgeon recommended it. I had spine fusion and a laminectomy to relieve pressure o the L5S1 nerve, right leg. I had foot drop and the suspected cause was compression of the nerve at the time.
Now that my left foot has become weaker, I am being fitted on Monday, May 6 for <span class=”PastReplies”>Prefabricated Off The Shelf Noodles by Kinetic Research for both feet. I</span>i tried one on my left foot at my first ALS Clinic April 15 and really liked it. They are light weight and have a sort of springy feel under the heel which gave me the sensation that the AFO was helping me to walk with more energy, sort of helping to propel me forward.
And the good news is they are covered by my Medicare plan. I’m hoping I am going to like them as much as I did on April 15. I will let you know how it goes.
May 3, 2019 at 4:54 pm #11814
Diana, I sure like your Kinetic Research AFO “Noodle” and wish mine had been that sleek and easy! A bouncy step would be an improvement over my clunk, clunk, clunk!
May 2, 2019 at 10:42 am #11794
some content got added to my reply after I posted it….is there an edit feature we can use? Thanks!
May 3, 2019 at 5:11 pm #11815
Here are some of my own tips and resources as a follow-up to my column about my AFOs:
– Shoes: Hotter Shoes at https://www.hotter.com/us/en They have wide and extra wide sizes in flat shoes that look stylish. I have “Shake” and “Quake” styles. Not sure about which of the men’s styles work. These may seem pricey, but they are quality-made, sturdy and have lasted me 7 years!
– I don’t wear my AFOs at home if I am sitting a lot. Or sitting long periods in the car. AFOs are “immobilizers” and prevent me from periodically stretching, circling or generally moving my ankles and lower legs. This can also hinder good blood circulation.
– I wear them for short stints of walking (with rollator) when caution is needed. IE., hairdresser’s and some restaurants. (the AFOs make other people more aware of me, and thus avoid bumping me!). And I wear them to the ALS Clinic.
– Lastly, always do good ROM exercises after taking them off. Ankle circles, foot massage, calf stretches, etc. Note: I have found that my recent success with chair-squats has strengthened my legs so that I feel more stable when wearing my AFOs.
Do any of you AFO-owners have additional tips to share?
May 10, 2019 at 3:40 pm #11932
May 11, 2019 at 8:58 am #11939
Had my clinic visit last week and asked about AFOs. The reply was foot drop was not my problem. Spasticity was the cause of my almost total lack of balance, thus muscle relaxants (which I do not like) were the only choice.? On a brighter note I did not loose ground in strength and respiratory functions.?
Note to Dagmar. As for your shoes, Mary Janes are always cute and appropriate no matter the size.?
May 11, 2019 at 9:41 am #11941
Dagmar, thank you so much for posting the link to how to measure for shoe size for the Hotter shoes and also for the photo. I’m scheduled to pick up my new carbon fiber AFOs on May 13. I’m hoping my initial impression will still be the same. I had pretty high expectations after trying one a few weeks ago that they might make my walking feel a little less laborious.
Note to John: Congratulations on not losing ground in strength or respiratory functions! That must feel great!
May 11, 2019 at 11:57 am #11943
Awwww…. John, thank you for confirming that Mary Janes (even large ones 🙂 ) look fine! Diana & I appreciate the encouragement!
Add my congratulations as well, for your good strength and respiratory scores! I know well, how good it feels to go home knowing not everything is in decline. It’s like getting a little psychological extension on life – – a boost. Keep at the leg/knee pulls and keep up the good mindset!
October 30, 2020 at 12:44 pm #16679John FineParticipant
<p class=”p1″>Looking for suggestions of something between an AFO brace with a cane and having to use a walker/wheelchair. Does anyone know of a brace that has more support for the knee instead of just the ankle and foot drop? Thanks so much. — looking for recommendations.</p>
November 1, 2020 at 5:58 pm #16696
While in Rehab, 3 months ago, I was fitted with fixed metal orthotics. They go from the tip of my toes, up to my knees, for both legs. I was told they are the lightest, thinnest metal, possibly carbon. My doctor said they would be needed due to foot drop in both feet, as well as peripheral neuropathy. I also have muscle weakness, and was told that by wearing them I’d be less apt to fall again. Though I was told I should wear them all day, I decided to spend part of my day at home without them on. I think being able to move my ankles and feet has to be a good thing, plus it feels good. I just try to be extra careful when they’re off. I use a walker and still can only take a few steps on my own. I wanted to try using forearm crutches instead of the walker, but was told it wouldn’t be safe for me. I’d like to hear if others have had luck using these. Thanks to everyone for your posts, as they are so helpful!
November 2, 2020 at 8:49 am #16697John FineParticipant
Thanks, Carolyn! I found some pictures online and we will plan to ask about this since we have our ALS appointment this week. I don’t think forearm crutches would work since one shoulder is quite weak. Do you have a regular walker or an upright walker? We tried to get an upright walker but insurance denied it. Thanks for sharing your ideas!
November 2, 2020 at 6:02 pm #16704
Thanks John, for sharing your thoughts. I have a regular walker, and actually didn’t even know what an upright walker was, till I did a search. It certainly is frustrating when an insurance denial is why we don’t have what we know we need. Interesting that you have your ALS appointment this week, as my first appointment with an ALS neurologist is tomorrow. I figure I might as well ask her thoughts on my ability to walk safely with forearm crutches, even though the neuromuscular physician thought it wouldn’t be safe for me. I’d welcome any suggestions that anyone has, for questions I should be asking at my appointment tomorrow! I hope yours this week goes well!
November 3, 2020 at 3:33 pm #16716Chuck KroegerParticipant
<p style=”text-align: center;”>Up until the time I went and checked on AF o’s I was able to get from my wheelchair to the toilet by myself but the Afo testing and trial took so much out of me that now I need assistance. I decided not to go with the Afo because I don’t walk enough to justify the cost or the effort to put it on and take it off</p>
November 17, 2020 at 5:07 pm #16834
At the last clinic visit the physical therapist recommended that I get AFOs to provide support due to weak leg muscles and drop foot on the left foot. These AFOs are very sleek and very sturdy. I think they’re made of titanium and they fit well in any of my sports shoes.
I have another issue that I was wondering if anyone in the ALS community is experiencing. My toes on my left foot (with foot drop) have started curling similar to hammer toes. I consulted with the foot doctor and he said this issue has to do with the weak foot muscles and that surgery would relieve the pain. the surgery would involve cutting the tendons so they don’t pull the toes under. If anyone has this issue with toes curling and/or has had toe surgery, please share your experience. I am considering having the toe surgery to relieve the pain. I have to tape my toes to straighten them before putting on my shoes – everyday! : (
November 17, 2020 at 5:40 pm #16837DuaneParticipant
I recently bought a pair of these: Skechers® Oak Canyon Men’s Relaxed Fit Sneakers. I have very weak ankles and foot inversion, so these work well with my plastic AFO’s. Be sure to buy them one size larger. They come in many widths. They will be very difficult to put on at first, but will gradually loosen a bit. They give good firm support. I can’t put them on. Another person does the shoes and AFO’s for me.
November 17, 2020 at 7:03 pm #16843
Susana- I have experienced the toe-curling issue with both feet. More when I wear the AFOs than regular tennis shoes.
I do this: every night when I take my shoes off I massage my feet and gently stretch my toes. I also do gentle flex-point foot exercises. This is all while watching TV at night 🙂
When wearing my AFOs, I wear cushy, padded socks and – – these silicone pads on several toes. These are life-savers! I’ve tried many things and they work best.
Regarding surgery: ask to speak to your doctor’s patients who have had it. Ask them for their opinions. Think long and hard before having foot surgery. If your tendons are cut…how will this affect your foot’s ability to balance, walk etc.?
Try the massage and gentle stretches first. If you want exercise suggestions let me know 🙂
November 18, 2020 at 2:11 pm #16863
Thank you for your sharing. Yes, please let me know the toe exercises. I don’t want to go through surgery so anything you can suggest is greatly appreciated!
November 18, 2020 at 6:24 pm #16864
Susana – – I will put together a list and youtube links that I’ve used – – coming soon, I promise! (meanwhile, begin daily massages and gentle stretches).
November 19, 2020 at 4:05 pm #16871
I thank you sooo much, Dagmar!
November 19, 2020 at 4:36 pm #16873
While I was in Rehab in June, the physical therapist there fitted me with bilateral AFO’s, non-custom, made of carbon, for the peripheral neuropathy in both of my feet and legs. At first, they seemed to be comfortable, very lightweight, and gave me the stability I needed to be a bit safer, as I used my walker. I asked about taking them off to do my exercises, but was told by several of my doctors that I would be at great risk for falling. When I got home though, I tried walking without them, using the walker of course, and I then felt I was better able to use the muscles in my legs and feet. About 3 weeks ago, I started having pain on the outer edges of my feet, right where the metal from the brace make contact. Wearing them has become a challenge, even with trying to attach padding to the metal. I think I may need custom braces, yet I am not so sure insurance will pay for them. I’m hoping the PT at clinic tomorrow, who I will be seeing for the first time, will give me some advice! Has anyone else experienced anything similar? Thanks to everyone who has already posted about their orthoses.
November 19, 2020 at 6:47 pm #16875
Carolyn, I know what you mean about the ongoing issues with your AFOs. (see the photo of mine at the top of this Topic page)
I used to follow the PT advice and wear them all the time, but began to think – – how much strain is on my leg circulation from being strapped in and non-moving for hours at a time? Plus, without the ability to move my ankles and lower legs, I worried those muscles would weaken from lack of use.
Over the 8 years I’ve had them, I have developed a “system.” I don’t wear them around the house – – I walk with a rollator that keeps my balance. This allows me to sit and still move my lower legs. I wear them when I walk short distances and need them as a visible “don’t bump into me” signal: like to the hairdresser, dentist, a restaurant w/o handicap access, and, of course, to the clinic.
After the first 6 mos. I had to take them back for refitting/reforming: my ankles were rubbed raw. I do wear padded knee-high socks plus the toe caps I mentioned to Susana.
PS: when you do standing exercises, position yourself with a sturdy chair behind you and have your rollator in front (locked down). This way you don’t have to wear the AFOs but are safe from falling.
November 19, 2020 at 7:03 pm #16876Dave DahlParticipant
During a virtual support group a few months ago, a person mentioned she uses CBD ointment to relieve the pain of her toes curling. It comes in a stick like deodorant in blue or red (the potency). I don’t know if that is available in your state, but it would be worth checking out.
My concern is that AFOs will make me less mobile without them. (so stubborn)
November 23, 2020 at 1:27 pm #16901Dave DahlParticipant
That CBD is actually a medicinal marijuana in rub-on form.
Another item that may be of interest about pain and sleeping, a friend recommended a book, Earthing-Clinton Ober which talks about a person’s relationship to the earth and how it can be a healing power in our lives.
For those who are in warmer climates it is easy to connect to our earth. In northern climates there are pillows and sheets that can help one to connect. A quote from p.164 states that after being diagnosed with ALS sleep became erratic, a earthing blanket helped. Also a mat and diet changes have made this person remain stable for the last year.
November 25, 2020 at 1:40 pm #16926
November 22, 2022 at 2:41 pm #23110PattyParticipant
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?
November 24, 2022 at 11:53 am #23125
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.
November 24, 2022 at 3:06 pm #23126Bill CorriganParticipant
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.
November 24, 2022 at 4:22 pm #23127Elaine AtchisonParticipant
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?
November 24, 2022 at 4:30 pm #23132
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.
November 30, 2022 at 7:55 am #23158Kathleen B (Katie)Participant
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 !
November 30, 2022 at 7:56 am #23160Kathleen B (Katie)Participant
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!)
December 24, 2022 at 5:59 pm #23259DickParticipant
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.
- You must be logged in to reply to this topic.