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    Guests online

    Am i the only person who wonders who all the 'guests' are along with the members who are online. Does anyone know? I find it very confusing
    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

    #2
    I was one! Briefly.... and then because posting on here helps me get my brain sorted out, I started posting about Dad's symptoms. I had a good rummage around to see what was happening to other people on here, and their previous questions/advice.

    Maybe people are shy of posting if their symptoms aren't as severe? Or, they are still working, with slow progression, and don't want to accidentally reveal their diagnosis? Not sure, just guessing....

    Or maybe, like me, they have become carers and want to know what to do to help, but, so taken up with caring too tired to post? I think I am getting to that point now....
    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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      #3
      Guests I think is anybody reading forum posts that haven’t joined so they cannot post. The forum’s are readable to anybody I think, unless this had changed since I joined about three and a half years ago, Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

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        #4

        Yes, it's a public forum, meaning anyone can read posts without the need to register, but only members logged in can access your profile.

        In case people are not aware, it's possible to further restrict what others can, or cannot see. This is done in User Settings --> Privacy, where you can select from a pull-down menu, who can see what.

        This is how it looks on a PC (a phone looks different, but still found in User Settings --> Privacy) and these are my preferred settings, obviously you can choose your own.


        Forum Privacy Settings (2).png
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Ellie thanks for the nudge. Just checked mine and I’d missed one

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            #6
            Yes thanks Ellie... I've just adjusted my privacy settings too. X

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              #7
              De nada.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                #8
                Me too thanks x
                Janette x

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                  #9
                  just a comment, but i had to be approved to join - does that mean i could have read posts wthout joining? i remain confused
                  Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                    #10
                    Looks like it. You planning to leave? 😊

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                      #11
                      Originally posted by EvelynMW View Post
                      ... does that mean i could have read posts wthout joining?
                      Correct, Evelyn, but that's all you can do on the forum without joining - and you wouldn't have been able to speak to us lovely lot 😃😃 That must be worth joining up for, eh??!!

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

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                        #12
                        What worried me Ellie is that Evelyn didn't answer. We're obviously not that wonderful 😭

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                          #13
                          Thanks Ellie. I’m going to check my privacy settings now, on my mobile, Lynne x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            I just looked on my mobile and can’t find where to choose privacy settings (who can see my posts etc) 😣 x
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Originally posted by Lynne K View Post
                              I just looked on my mobile and can’t find where to choose privacy settings (who can see my posts etc) 😣 x
                              Lynne. Try going into your profile
                              click on edit setting
                              click on privacy
                              you should then see a list of who can see what. Change them all to members if that’s what you want

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