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
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