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    • #22825
      Eric Jensen
      Participant

      3/22 I was walking without assistance. Today I made an appointment with a power chair provider. I get to pick my color. 😯 Great news is that I can work with Team Gleeson with the chair accessories. So FAST!

    • #22826
      john hamilton
      Participant

      That’s good to know! I can feel my legs seeming to get a little more clumsy each day.  Was also concerned about how long it would take to get a chair. Glad to learn there’s a “Team Gle_a_son” for PALS-ers!

    • #22827
      Elias
      Participant

      Hello Eric hope you’re doing well, could you please send me what kind of power chair you’re acquiring and maybe where can I find one, I think I will be needing one very soon. greetings.

      • #22828
        Eric Jensen
        Participant

        I am “fitted,” soon and I will let you know. Thank you

    • #22832
      Leslie
      Participant

      The Team Gleason Foundation is wonderful. They provided me with a seat elevator for my wheelchair, which insurance would not cover. Yutha was the young professional who worked with my PT, mobility specialist, wheelchair company and myself. She was beyond excellent!

    • #22834
      Elias
      Participant

      Thank you so much 🙏

    • #22846
      Pete Caluori
      Participant

      Good Luck Eric!  I’m in the same position, I walked into the hospital at the end of march and was taken home 2 weeks later in a private ambulance and could not walk.  Luckily with some help from a physical therapist I can now walk (actually, hobble around) but I tire easily and use a cane because I’m afraid of falling.  I was placed on Maine’s Hospice and they had a manual wheelchair and hospital bed waiting for me when I got home.  Since my upper body strength has diminished I now have a power wheelchair thanks to the New England chapter of the ALS group!  I am now on Maine’s Home Health Care and they have been great!

    • #22873
      Kathleen B (Katie)
      Participant

      I can relate to this ‘fast progression’ thread…I was April 2021 ALS diagnosis with limb/lumbar onset, left foot drop start . Got AGO’s  both lower legs by May 2021, rollator walker by June to use full time for safety in & out of house—and that lasted till Dec 2021—when I could no longer manage to get self into our SUV (step onto running board impossible), and so driving & independence ended.  Yes, still used rollator & AFO’s full time in & out of house…and then out of house became too difficult for safety as of March 2022.  Power chair needed; front passenger seat in SUV needed to be adapted as well (Turney Evo seat by Braun Ability installed by Creative Mobility).   …this is all out of pocket (unless a veteran).  By June I was scheduled for a ‘wheelchair fitting’—and indeed, learned about the Team Gleason group from another pALS support group connection. WONDERFUL SUPPORT, highly recommend looking at their site, talking to your wheelchair fitting PT & specialist BEFORE ordering anything!  The I lift (seat elevation) feature on a power wheelchair is SUCH a blessing for SO MANY REASONS!
      long story short—the power chair I got is called a Quantum (Stretto 3)…I also tried a Permobil model—your seating service should have options available for you to try—AND, will  know which work with the seat elevation feature (not all do) that  are Team Gleason eligible for cost coverage.  It IS a process WELL WORTH the time and effort. The power chair is customized to your size, needs, etc.   start to finish, a chair can take 6weeks to 6 months to get—all depends on the supply chain for individual parts—so starting a little ahead of need is recommended—and wise.  My husband & ALS clinic staff were better at recognizing & encouraging that for me. I am forever grateful.  Best of everything to all of you in this fast lane of progression—perhaps not wearing ourselves out with trying to maintain skills longer  will help us last longer too!

      • #22880
        Dagmar Munn
        Keymaster

        Kathleen, your progression sure was fast. I’m curious… during that first year prior to having to use a power chair, did you do any type of home exercises to help keep your legs strong enough to wear & walk in the AFOs? How about gentle overall body exercise/movements?

    • #22901
      Kathleen B (Katie)
      Participant

      Yes indeed—I was following the exercises you recommended from beginning (early am before rising leg moves & arm moves making opposite side of bed)…and the things I was getting to do from the Neuro PT place I was going (all gentle stretches like modified yoga) but I could not do any ‘on floor’ things—even when they tried to have me learn to get up from a fall (in case it happened)…and that was Sept/Oct of 2021.  Plus, I continued to do as many ADL’s as possible thru the day as ‘exercise’ enhancements !  I was VERY positive that I could maintain my skills—the goal was to be a standing, walking person for my son’s Nov 2022 wedding (not that woman in the wheelchair…).  But that is not my reality..and I think it is because I don’t have the support of Riluzole or Edvarone on my side? Maybe? I have been in the courage ALS Phase 3 clinical trial since April 2022 …and now on the actual study drug (Reldesemtiv), but it will not help my legs at all…goal is to support unaffected muscle & slow down progression that way.  So on I roll…not at all liking the incredibly slow rate of progress in  learning more about this rogue, devastating  ALS  condition.  Thanks for asking & listening and offering so much practical things to try & do!

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