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    • #22167
      Sandra Mikush
      Participant

      My PT suggested an inexpensive plastic AFO for early weakness in my ankle and slight foot drop. I tried it and found it very “clunky” and nearly impossible to walk down hills (I live in the mountains). I love to hike and play pickleball and can’t imagine doing either with this AFO. A friend has a carbon fiber AFO (she has nerve damage with similar muscle weakness), and she says it allows her to hike and play pickleball. I realize these are more expensive and insurance only covers an AFO every 5 years, but I want to find the best solution that will allow me to do what I enjoy. I’d welcome advice from anyone who has tried both. Thanks so much!

    • #22178
      Dagmar Munn
      Keymaster

      Sandra, I have been using AFOs for 10 yrs now. Mine are polypropylene. I have a photo of them on this blog post: https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html
      And yes, they are clunky. They feel like I’m walking in ski boots or snowshoe boots. I guess it’s due to the nature of correcting “drop foot” that they feel clunky and make walking feel like I’m Frankenstein’s monster 😉 (I couldn’t even imagine playing pickleball in them!

      So, if you find a pair of AFOs that make mobility easier, I’d love to know about them… 🙂

    • #22194
      Mary Jo Peterson
      Participant

      My AFO was carbon fiber and I loved it!

    • #22195
      Lisa Brown
      Participant

      Hi,  Before I was diagnosed I had foot drop and the first AFO was a simple L shaped brace – I could walk again – this came at the right time too, just before a quick trip to Australia to meet my new in-laws.  It wasn’t long (6 months or so) before walking once more became awkward and painful on the back. Then came the plastic, custom, ‘hinged’ afo. I was set free once again.  However, my ALS, still not diagnosed 12 months later, was progressing, coupled with a deteriorating osteo onset hip (which many trips and falls have not helped, Monty python comes to mind), I started to not be able to lift my knee and thus negated the use of an afo for walking but was useful for stabilising the ankle.  2 years later I can’t do steps and another six months I am in a wheel chair.  My hip is painful all the time and stops me sleeping well.  Don’t be like me, if you start tripping and falling, re appraise your situation and your needs.  Carbon fibre in my opinion is worth the money if you are not going to deteriorate any more. Personally I would go for a walk assist exoskeleton if I could afford it to keep those muscles moving.

    • #22197
      John Watson
      Participant

      Hi Sandra,

      My PT at the University of Utah clinic recommended a non-standard type of AFO from FootScientific for my foot drop (https://footscientific.com/collections/elevate-360-deluxe-accessory-kit/products/elevate-drop-foot-brace-2-0-with-deluxe-accessory-kit). I admit I’m a bit biased since I’ve never used the a standard AFO. However, I find the Foot Scientific brace easy to put on and remove. The main reason I like it is that the tension is adjustable to fit your activity level.

    • #22205
      Sandra Mikush
      Participant

      Thanks to everyone for your feedback. This is a link to the AFO that an acquaintance has. She doesn’t have ALS but has permanent nerve damage that led to foot drop and ankle weakness. https://www.thuasneusa.com/product/sprystep-flex/

      I know my PT is hesitant to have me fitted for an expensive AFO since I’ll continue to progress. But I love the idea of an AFO that allows me to be active for as long as possible. I’ve tried pickleball with my plastic AFO, and it’s ok, but hiking on hills is really awkward.

      Did you get fitted for an AFO through your ALS clinic, or did you go to an orthotics professional? Is it possible to try different forms to see which provided the support you needed?

      • #22209
        Dagmar Munn
        Keymaster

        Sandra – – a couple of thoughts to share with you…

        I like the model your friend is using. I’ve seen it used by others with ALS and they report that it is sturdy and of help. However, it seems best for those who have only problems with their Anterior Tibialis muscle (that flexes the foot up). I have in addition to the weak Anterior Tibialis muscle, weak arches (causing flat feet). So, my AFOs had to be more substantial and thus look like Storm Trooper boots 🙂 😉

        My neurologist wrote the prescription for AFOs and sent me to an orthotics specialist – – Hanger (they are nationwide) where I tried on a bunch of samples and a cast was made of my lower leg and foot. I then returned and was fitted with the AFOs. I recommend your doctor send you to an orthotics specialist rather than have your PT try to find one for you (especially considering the cost).

        Finally, what you said about your PT’s attitude bothers me. The mindset that you’ll “progress anyway” and to settle for the cheaper model – – is just not right. I’ve been using mine for 10 yrs. and I believe that by helping me stay mobile, my AFOs have helped slow my progression. Cheaper models break, hurt, and create frustration to the point of giving up walking.

        Stay positive. Your goal is to stay mobile. Speak to your doctor about seeking a specialist who can help you.

        • #22219
          Sandra Mikush
          Participant

          This is so helpful, Dagmar. I sent this thread to my PT to share my pALS research and told her I want a prescription and referral to an orthotics specialist. I feel so much better taking control of my situation. Thanks to you and everyone who weighed in.

      • #22213
        Lisa
        Participant

        Hi Sandra!  I had  Thuasne carbon fiber AFO, and if you’re still pretty active I think you would really like it.  It is incredibly light, only weighing a few ounces, and when you walk it spring loads which adds little “launch” to your step that simulates a more normal stride that you had before the foot drop. Mine also helped stabilize my ankle so that my foot wouldn’t pronate (turn in). My AFO was ordered for me after being evaluated by an orthotics specialist as Dagmar mentioned.

        If you can afford the out of pocket expense for the AFO without turning it into your insurance, it may be worth it to do it since it may allow you to continue to do the things that you love. The carbon fiber AFO’s are much less restrictive than the plastic ones but do offer less support.

        • #22220
          Sandra Mikush
          Participant

          Thanks for this reply, Lisa. I’m still very active and want to stay that way for as long as possible. I like the idea of an added spring to my step and ankle support. I’m much more encouraged about getting the right AFO to stay active!

    • #22215
      Bill Corrigan
      Participant

      I got carbon fiber AFOs from Hagar prescribed by my neurologist and they are like ski boots. I didn’t know I might have options as that was earlier and now I know to research, ask and be stern. I have very weak legs now, so I couldn’t play pickle ball, so they are fine, they keep me upright.
      I say get what you need now so you can do the things you want to do.

    • #22221
      Carolyn Barry
      Participant

      I was originally fitted with standard carbon fiber AFO’s, ‘right off the shelf’ as they were described to me. Since I hadn’t even been diagnosed yet, and didn’t have a clue as to what I needed or wanted, I agreed. Within a few months I had significant sores on the sides of my feet from the part that was on the outer portion of my foot and extended up to my knee. Though it took longer than I would’ve liked, I then was examined by an orthotics specialist, who determined I would be best fitted with a custom carbon fiber AFO. These are what I’ve been wearing since, and I’m happy with them. The fact they are extremely light, make all the difference in my ability to still be able to walk and lift my feet. My neurologist and PT feel that if I had a heavier AFO I would no longer be able to walk safely and tripping would be a constant risk. Dagmar I would’ve loved to purchase the same shoes that you sent the link to, but unfortunately the largest size they sell is a 10 and I wear an 11 🙁 I was so disappointed, as they look so nice! Sandra, good luck to you in getting your new AFO’s!

      • #22222
        Sandra Mikush
        Participant

        Thanks, Carolyn! I’ve learned from all of you to be insistent and persistent.

    • #22227
      Brian Stanfield
      Participant

      Another vote for carbon fiber.

      I was fitted for a large plastic AFO shortly after my dx in 2003. I was happy with it at first, until I did some traveling and saw the braces that other pals were sporting.  When we got home, the first call I made was to the orthotist. He made sure that I got exactly what I wanted, this time covering every option available. About a year later I got a matching Otto Bock AFO for my left leg, and they kept me walking safely for another two years.

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