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    #16
    I hope that you have a nice afternoon Evelyn, 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.

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      #17
      Originally posted by shelly21 View Post
      I log on once a day and i am guilty of not posting.
      shelly21 Please don't see yourself as being "guilty" - posting is not a requirement (though it's very welcome!) and browsers are not pariahs.

      Love Ellie.

      ​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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        #18
        shelly21 I loved the act you posted, and certainly do not feel bad. I wish i didn't post so much! But that is me, gobby to the end!
        Lynne K I did have a nice time, thank you. Shame i've just had an argument with my OH!
        Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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          #19
          Originally posted by EvelynMW View Post
          I cant help wondering why we only see posts from very few. Should we be encouraging involvement, do we even know if they ever log in? Why join, then do nothing? Am I just too nosy for my own good? Probably
          Took me three days and as many e-mails before I could post or reply. Maybe people could be put off if a similar experience
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #20
            Originally posted by LindaB View Post
            Took me three days and as many e-mails before I could post or reply. Maybe people could be put off if a similar experience
            Thanks for raising that pertinent issue Linda - maybe it's because spammers and bots won't or can't circumvent those validation hurdles, so the forum isn't overrun by them?

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

            Comment


              #21
              LindaB So sorry to read that you are/were terrified - I am trusting that you have now come to terms with it. Sorry that it took so long to be able to post too! Not the best start, in more ways than one!
              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                #22
                EvelynMW I think coming to terms with the diagnosis may take time- if at all. It's about grief & loss & I guess that's part of everyone's story. Felt in turmoil but soon I'm sure I'll rebalance. CBD oil seems to help. 🌱
                ​​​​​​


                Yes the IT nearly defeated me lol but I'm here now🎉
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  #23
                  Never underestimate the power of the mind.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #24
                    Originally posted by Ellie View Post
                    Thanks for raising that pertinent issue Linda - maybe it's because spammers and bots won't or can't circumvent those validation hurdles, so the forum isn't overrun by them?

                    Perhaps Admin_MND could clarify this. xx
                    Spam and bots are partly the issue yes. Everyone who registers on the forum has to click on the validation link within an email they receive to complete registration. If this doesn't happen, then the user will end up stuck in a 'pending' queue in the backend of the forum which we then have to manually approve.

                    Obviously if the registration happens in the evening or over the weekend we won't necessarily see it until the next time we're logged in, so there could be a slight delay but hopefully we do try and keep on top of everything where possible.
                    Our working hours are Monday to Friday 8:30am until 5pm

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                      #25
                      Thanks for the clarification Admin_MND
                      ​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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