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    • #13752
      Amanda
      Keymaster

      I just read this article on ALS News Today https://alsnewstoday.com/2019/11/08/als-nonprofit-launches-mobile-app-to-track-disease-progression/  I was thrilled to see that funds were awarded for a new app. This app may impact ALS research in several ways. First, it is designed to track symptoms and will provide more data more frequently. Secondly, it will help researchers share information worldwide.

      In what ways do you think technology can assist in ALS research and finding a cure?

       

    • #13761
      Dagmar Munn
      Keymaster

      ALS is one of the rare diseases that will definitely benefit from advances in technology.

    • #18270
      Astrid
      Participant

      What i dont Understand is why are there no developments for us pAls who have lost the  use of a hand or leg, there must be a lot of clever students in the world who can develope some kind of device for us so we can use that hand of leg again? Sort of an exoskelet?.

      • #18271
        Dagmar Munn
        Keymaster

        Astrid – – here is one type: https://alsnewstoday.com/social-clips/2017/01/26/wearable-robot-hand-give-als-patients-better-hand-control/

        The device could help people who suffer from diseases where hand control has been compromised. The device looks like a flexible rubber glove and will help people pinch and grasp objects. It has three working figures which fit over the wearer’s thumb, index and middle finger and can be adjusted to fit different-sized hands.

        The glove is attached to a monitor through thin wires and is waterproof so wearers can use it in the bathroom and kitchen. It’s hoped the device will offer people more independence and allow them to do things for themselves for the first time.

        • #18305
          Aloha Frank
          Participant

          I agree Astrid. Surely there must be some form of assistance to enable at least some limited use of a limb lost to ALS. I’m surprised there isn’t anything available, at least nothing that I’m aware of. Lost total use of my left arm and leg months ago. Would be great to have at least some use of both. I know I’m losing use of my right side too. Not looking forward to that!

      • #18394
        Anonymous
        Inactive
    • #18395
      Anonymous
      Inactive

      VA was researching this in 2016, see the end result at indego dot com.

    • #18400
      Duane
      Participant
    • #18398
      Anonymous
      Inactive

      Here is another system that could be adapted for pALS.

      World’s Most Advanced Robot: HAL Exoskeleton (robotamazing.blogspot.com)

    • #18397
      Anonymous
      Inactive

      Here is another one for upper limb mobility.

      EksoVest Bionic Exoskeleton | HiConsumption

       

      This one was developed for use in industrial environments, so it is probably powerful enough to deal with paraplegics.

      Incorporating this and the one above that the VA offers with the brain implant research they are doing could feasibly allow a completely paralyzed individual substantial mobility.

      Ideas?

      • #18467
        Angelo Venosa
        Participant

        Take a look at Keeogo

        https://keeogo.com/

        I was thrilled by this project when my diagnosis was still IBM (inclusion body myositis)

         

        • #18526
          Dagmar Munn
          Keymaster

          Angelo, the Keego is truly a wonderful innovation! Thanks for pointing it out. This type of technology is getting more user-friendly and “affordable.”

          I hope they go on to invent something similar for foot-drop. My knees and hips don’t need the extra help, but my ankles sure do!

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