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    • #19944
      Marianne Opilla
      Participant

      My PT is on the fence about AFOs.  He says most people get them but dont use them due to comfort issues.  They are expensive.

      I am wondering if they will SIGNIFICANTLY benefit my walking.  I currently use a rollator or “furniture walk”.  I have total foot drop on left and about 50% on right.  I would like to walk more steadlly without rollator.  PT says I would still need rollator for safety.

      Thank you for sharing any experiences.

    • #19949
      Carolyn Barry
      Participant

      I was fitted with AFO’s last June, before I was diagnosed.  I’ve been wearing them since, and I will say that without them I would not nearly be as stable.  As my legs have gotten weaker, I find that having the AFO’s on makes me feel like my legs are as strong as ever.  Walking is much easier, and I feel much more capable all-around.  I do walk without them at night, and I almost feel ‘wobbly’ which makes me feel much more vulnerable to falling.  My AFO’s are made of carbon, so they are incredibly lightweight.  I recently had custom orthotics made, upon the advice of my PT.  That positions my foot in the best way possible, inside the brace. My AFO’s go from the bottom of my foot to right below my knee.  I wouldn’t do without  at this point.

    • #19950
      Carolyn Barry
      Participant

      I will also add that even though my legs and feet feel much stronger, when my AFO’s are on, I still am dependent on my rollator to walk safely.  I too have foot drop in both of my feet.

    • #19954
      Dagmar Munn
      Keymaster

      I agree with Carolyn! AFOs are helpful… but you do need to put the time in to make them fit & feel comfortable. And, they are not a substitute for a rollator (get used to having a rollator around f-o-r-e-v-e-r 😉 )

      I got my pair 11 years ago, and have been wearing them ever since. Lessons learned:
      – If at first, they don’t “feel” comfortable, keep trying new adaptations. I went from thinking I needed more padding in my shoe and inside the AFO, to ripping all that out and wearing silicone toe pads. …ahhh, relief.
      – If you don’t like how you look in them, find fun shoes or wear fun socks. Or, just get over your ego. People will understand. And when I wear mine, people “know” not to bump into me.
      – They are a brace, and restrict natural movement. So, I don’t wear them around the house (I do wear sturdy tennis shoes) and I do leg stretches, heel raises, ankles circles daily.

      I’ve written a lot about my AFOs…here’s one:
      “How I Learned to Love My AFOs” https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html

      • #19992
        Marianne Opilla
        Participant

        I have read your AFO blogs!  They are informative.  My ankles wont circle and heels wont raise anymore despite diligent exercise to keep limber and mobile.  My ALS seems to have a mind of it’s own….no matter what I do.  “Invasion of the Body Snatchers”

    • #19955
      john s
      Participant

      I started with an AFO in 2015 and was upgraded to a KAFO (knee/ankle/foot orthosis) in 2017. At first, the AFO was a pain, they gave me a cheap plastic one and it hurt my foot. Then they upgraded to a metal one that clipped into the heel of my shoe that was much better. It gave me a lot more confidence because it kept my toe-up.

      The knee started buckling on me eventually and the AFO was not as effective.  Step forward and swing the other leg…and my knee would not stay up. So, introduce the KAFO, which is much more costly but the VA ok’d it. Now I have 2. Kafo opens and locks as my leg swings. It keeps my knee from buckling out from under me as I walk. I am pretty slow these days, but I refused to stop walking!

    • #19957
      Fran Finney
      Participant

      I speak from a variety of perspectives: As a Physical Therapist who works with PALS, as a former caregiver for my now deceased PALS husband, and as a former Care Manager for the ALS Association. What I have observed is if a PALS has a slow progression in their lower extremities, then properly fitted AFOs can be very helpful and very useful. But if the progression is fast, then usually the AFO soon becomes too heavy and does not offer enough support to be worth the cost.

      • #19991
        Marianne Opilla
        Participant

        Fran,

        Thank you for sharing your experience!  That is about what my PT said.  I am in the second catagory and have alot more than foot drop going on with my declining ability to walk.  But at the same time, i think he didnt want to deny me something I asked for!

    • #19963
      Gigi
      Participant

      I highly recommend AFO’s.  I use them when I want to walk more than just around the house…walk in neighborhood, grocery shopping etc.  My legs get far less tired and I can walk faster. Like some others I find them a little clumsy around the house. I also had to get over my ego and have found fun socks and shoes to make me feel better about them. My orthotics person did a great job fitting them.

    • #19966
      Douglas K Powell
      Participant

      Hi –

      I have 100% foot drop in both my feet and would not be nearly as mobile (relative term!) without my AFO’s. I have two carbon AFO’s – and yes they are expensive. But they are worth it vs the cheaper plastic ones. Medicare will pay for AFO’s but only once every 3 to 5 years (don’t remember the exact duration). Unfortunately one of my AFO’s broke after I fell last winter and Medicare wouldn’t pay of it – I had used my allotment. It cost me $3,100 to replace.  I have filed a appeal with Medicare.

      At that time I had two AFO’s – the one that broke was constructed with a weld and that is a weak point and where the AFO broke. My other one does not have any welds and therefore no weak points – I replaced my broken AFO with one that does not have a weld.

      I also use hiking poles to steady my gait – even with the AFO.

      When I had my first public unveiling of my AFO – I was very self conscious. Now I don’t care. I do get the occasional curious stare or question……but it doesn’t matter. It is what it is and I can’t help it – I’m doing the best I can.

      I begin the day without my AFO’s – try to exercise my feet and lower legs – I am wobbly but it is good to feel my feet on the floor. I have to be extra cautious because I am more prone to falling.

      I would not hesitate to get an AFO and hopefully your insurance covers it.

      Thanks..

      Doug Powell

       

    • #19975
      Mary Tiknis
      Participant

      My AFO are very helpful when I Am walking with my rollator . Without then I have a harder time walking due to foot drop. The metal  ones are better.

    • #19990
      Susana Rave
      Participant

      Hi Marianne,

      I also have bilateral drop foot and the AFOs are a must for me. They provide stability and allow me to walk (heel toe) and without tripping.  My PT recommmended the titanium type which are light and comfortable to wear.  I also use the rollater when walking long distances.   I love them.  Fortunately, my medical insurance covered 90% of the cost so my out of pocket was about $300.  It was totally  worth it.

      When you get them you’ll be so happy you did.  :  )

      Susana

    • #19993
      Marianne Opilla
      Participant

      All,

      Thank you so much for sharing input on the AFOs.  After reading what some of you are doing, I realize that I probably have more gait issues than foot drop.  I will discuss with my MD and PT in more detail again.

    • #20012
      Ellen
      Participant

      About a year ago I was diagnosed with ALS.  I am wearing metal AFO’s, which are a necessity for me due to bilateral foot drop. I am very glad I have them.  I don’t know what a rollator is but interested in finding out more about their usefulness.  I try to walk as much as I can and think perhaps having one would be useful.  So much to learn.  Thank you for the tips and experiences.  They are all very useful.

    • #20019
      Dagmar Munn
      Keymaster

      Hi Ellen, a rollator is a walker with 4 wheels. It sounds like you’re still able to walk in your AFOs without having balance issues, or tripping. A rollator is so helpful to provide steadiness and protection from those “oops!” moments.

      I wrote a few articles about my rollator, hope these are of help:

      https://alsandwellness.blogspot.com/2020/08/learning-to-roll-through-life-with-my.html

      (this one is humorous) http://alsandwellness.blogspot.com/2016/01/walk-this-way-als-humor.html

    • #20031
      john s
      Participant

      I have a rollator but try not to use it. I do well on a cane so far. Rollators are good because they have a break to stop and steady, and the one I have has a seat so that I can sit if my legs are exhausted. The small little carry bin under the seat is also handy!

      AFO’s and KAFO (knee/ankle/foot orthosis) keep me using those muscles that are trying to atrophy away. If we keep them moving they will not atrophy as quickly then if we stop using them, so I plan to walk as long as I can. They have robotic legs now that you can strap on, I wonder if those will do well once I cannot walk on my own.

      EKSO BIONIC SUIT | WEARABLE ROBOT ALLOWS PARAPLEGICS TO WALK

    • #20037
      Kathleen B
      Participant

      Hi all,

      I’m new to Forums, but got interested in ‘joining in’ because of some of the discussions.  I’m really new to ALS (2 months ago diagnosis)…but I do already have both AFO’s and a rollator walker.   I was not a fan of having or using either right away…but I was more frustrated with moving slow to be safe and avoid falls (due to foot drop issue).  So, some really insightful PT persons recognized that I wanted to be active and involved in what I like and want to do with my days and time (taking walks, gardening, shopping, play/help with grandkids), so they had me try both and see if they are ‘worth it’.  Indeed they can help!  (p.s. maybe get larger wheels on rollator if you are outdoors fan?–I did–its’ like the difference between a mountain bike and a racing bike for multi-surface use:)

      Not totally easy, but –just like John S says, it keeps me upright and feeling like I still have a sense of ‘normal ability’ (despite the lack of weak foot, lower leg cooperation!).   I hope your PT and Dr. can support your need to be as mobile as possible…AND be as safe as possible, while conserving some energy.  (Katie)

       

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