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Thread: Public MND/ALS GROUP ON KIK

  1. #1
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    Public MND/ALS GROUP ON KIK

    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)
    #mndals

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

    Stay strong

    Steve

  2. #2
    Forum Member Gillette's Avatar
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    Mar 2019
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    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.
    Dina


    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Ellie's Avatar
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    Oct 2012
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    3,410
    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Terry's Avatar
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    May 2012
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    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.

  5. #5
    Forum Member nunhead_man's Avatar
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    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; 1st October 2019 at 15:59. Reason: grammer fix after voice dictate
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  6. #6
    Forum Member
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    Oct 2018
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    13
    Hi I was going to give this a bash but have heard Kik is closing

    https://www.bbc.com/news/technology-49809449

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