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    Hello peeps.

    I have set up a public group on kik (a messenger app) for anybody suffering or caring for someone with this horrible disease.

    I just though it would be a good way to share our experiences or struggles on a day to day basis. Just download the app, set up a profile and then search for the public group.

    Group name MND or ALS (people caring for or suffering from this disese)

    Hope yo see some of you there as I'm sat on my lonesome in this room.

    Stay strong


    Hi Steve and welcome to the forum.

    I tried to have a look on Kik but the wifi in the hospital is not quite up to downloading an app. I hope you are successful in setting up the group.

    Trying to keep positive, but not always managing.


      Hi Steve and welcome.

      I wish you well with your group. That Kik App can be quite unstable and tedious to use, especially for eye gaze users.

      You can always share your experiernces here too, should you wish.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


        Hi Steve and welcome to the forum;

        Good luck with your public group but I don't understand that stuff.

        You could start a thread here just doing a similar thing or join in with other threads that suit.

        Best wishes, Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


          Good afternoon Steve

          I am a bit of a dyed in the wool techie, although properly more a digital tourist than a digital native!

          I have a number of apps which I look at, but I do not really want another MND one, so you will not find me there, but I hope it goes well and get what you need from it, although you might get as good value here as there, given who we are.
          Last edited by nunhead_man; 1 October 2019, 13:59. Reason: grammer fix after voice dictate


          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

          "Things turn out the best for people who make the best of the way things turn out"


            Hi I was going to give this a bash but have heard Kik is closing

            Millions of people will be cut off as the app's creator shuts down to help it fight legal action.