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Thread: Really not sure where to put this so I shall put it here

  1. #11
    Forum Member Ellie's Avatar
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    I haven't read Dave K's thread for months as it had nothing whatsoever to do with MND. It may have changed, but if it's still the same, then maybe a closed group fits that particular thread best. Not being a thread follower, it really doesn't bother me.

    However, I would not want other topics to follow suit, creating a "them & us" forum; that defeats its purpose.

    Jan, I don't see Dave K's posts, but I too find the "dig the garden" comment abhorrent.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    Forum Member Dude's Avatar
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    Hi Susan It was a good song in it's day, but I do regret posting it . The obvious motive behind it was childish of me.. Dude x

  3. #13
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    Hi Everyone
    Up until and couple of weeks ago,I'd started to become a little more confident in sharing on the forum.I Looked forward to looking in every day,sometimes a couple times a day.

    I shared on something very personal to my journey,my life and how an experience had helped me look at my life with mnd differently.
    I did receive some some very public negativity,it's a shame they didn't send me Pm and maybe we could have discussed what they felt was so wrong with my personal post.

    I thought really hard about how I should go forward,my choice to not post and leave it for a while.

    I'm still very green round the edges on the forum , but one thing I do know I've missed posting and feeling the wonderful support that a forum like this can provide.

    Just please please pm anyone who thinks I may have upset them , I will try my best pm back (I'm not that confident with pm's at the moment and will happily discuss with them.

    It will become such a sad place to be if we have to think constantly of what we are sharing about our own personal journey's,

    Dippy
    xxx

  4. #14
    Forum Member Jan's Avatar
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    Hi Dippy, I hadn't realise that you had received such treatment, I think that the one thing we all need to realise is that MND is not just any illness, it's an illness without positive treatment and at the moment no cure; this is bound to make all of us at times to be snappy, irritable or just plain sad. Also sometimes, people are posting with limited capacity and relying on gadgets to assist them to post, in such circumstances a 'missed' word or badly contructed sentence can make all the difference to what others are reading.

  5. #15
    Forum Member Ellie's Avatar
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    If we all re-read what we've written before we post it, perhaps that would cut down on misinterpretation.
    The written word just can't get nuance across - well, I can't anyway!!
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
    Forum Member Steve's Avatar
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    Terry, it's not achieved its aim. The posts still show on the activity stream.
    sorry about the absence of caps in my posts, my shift key is broken.

  7. #17
    Forum Member Dude's Avatar
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    I'm still waiting for a comment from Dvd who mistook my post meant for Dave. I don't expect an apology, just an acknowledment like '10-4 Dude '

  8. #18
    Forum Member Steve's Avatar
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    11-5
    24-7?
    sorry about the absence of caps in my posts, my shift key is broken.

  9. #19
    Forum Member Dude's Avatar
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    CB not Police Steve lol.

  10. #20
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    Valid points made.

    This forum is for all that need it. This illness causes enough isolation for those living with it, families and carers. This forum provides a special kind of friendship where no one should feel ‘separated’ or ‘shut out’ when being here. That would defeat the purpose of the forum.

    This forum always had an ‘all for one, one for all’ atmosphere through the good times, the bad times and the really bad times. A place to express yourself without judgement and ridicule which is why this forum is so unique and special, and needed for all to share in. A true 'shelter from the storm' kind of place to turn to when needed.

    We can agree to disagree…that’s life, and makes the world go round. Agree with Steve, a person can choose to read what they want to read or not.

    xox
    .

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