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    • #11732
      Dagmar
      Keymaster

      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.

       

       

    • #11780
      John Russell
      Participant

      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.

    • #11781
      John Russell
      Participant

      Any tips for coping with autocorrect? Just read my previous comment and it’s a bit incongruous.

    • #11793
      Diana Belland
      Participant

      Hi, Dagmar,

      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.

      Thank you!

      • #11814
        Dagmar
        Keymaster

        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!

    • #11794
      Diana Belland
      Participant

      some content got added to my reply after I posted it….is there an edit feature we can use?   Thanks!

    • #11815
      Dagmar
      Keymaster

      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?

    • #11932
      Dagmar
      Keymaster

      Here is a helpful link from the Hotter site about measuring foot size (be sure to measure while wearing your AFOs) https://www.hotter.com/us/en/info/fit

      AFOs and shoes

    • #11939
      John Russell
      Participant

      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.😊

    • #11941
      Diana Belland
      Participant

      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!

    • #11943
      Dagmar
      Keymaster

      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!

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