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Thread: Forum Fatigue

  1. #1
    Forum Member Steve's Avatar
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    Forum Fatigue

    Anyone else get it? I have not been active recently. The inevitability of it all. Watching new faces join and old friends deteriorate. It's tough to watch long term.
    sorry about the absence of caps in my posts, my shift key is broken.

  2. #2
    Forum Member Dude's Avatar
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    Yes Steve I get it. I tend to just post when I have something that will help and I look in a lot to see what's occurin'.

  3. #3
    Forum Member Terry's Avatar
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    Similar to Dude, I do post mainly when I think that I can help people. Watching people come and go is sad but I do believe that we have improved their lives by being here.
    Like the vast majority of people, I like helping others out and this forum helps me do that.
    I do miss the others, that posted more eloquently than me and the general banter on some threads.
    When you grow up together, so to speak, on a forum, you have a natural bond but it's hard to recreat that further down the road.
    It's always good to hear from you Steve, even though it is not one of your usual upbeat posts.
    Love 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.

  4. #4
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    I think Terry said it right on point.

    You are all a strong support group for one another here. As overwhelming difficult it is to bear the losses, hear the very real, and raw issues many are coping with on a daily basis, and greet new members it remains a place of comfort, support, knowledge, as well as many laughs and many tears, and some special and unique friendships.

    Members here provide consistent strength, and great advice to each other. There is a lot of comfort to be found in knowing ‘you are not alone’ when facing a challenging illness.

    I wish for, hope for, and pray for, Love, Strength, and peace of mind to All that find themselves here.

    CCxoxo
    .

  5. #5
    Forum Member Ellie's Avatar
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    Yes Steve, it's hard to see people come and go on the forum. If we need reminding of our mortality, we get it slapped squarely in our faces every few weeks.

    But, for my sense of self-worth, which took a massive nosedive when I became "invisible" when I could no longer speak, the forum is a way of restoring it to some degree. Like Terry, if I can help someone, that's good and I don't mean in an "aren't I great" way. Paradoxically, I find the forum takes the focus off my own situation and woes. That's just me!

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

  6. #6
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    Hi All,

    Some natural views from very wise members of global community.

    The value of forums like this is invaluable. Yesterday we learnt that over a 1000 vulnerable people with mental problems were allowed to die at the hands of the Southern Trust and the deaths were not investigated. I suspect the actions of Southern Trust were calculated.

    Without this forum I too would have been 'An avoidable death'.

    Terry is quite fantastic. He holds this forum together single-handed.

    We should have some news from the Ombudsman in the New Year about the value and role of forums like this.

    Regards

    Graham

  7. #7
    Forum Member
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    As I am very new to the forum this is the most amazing place for me to have found. There are so many people who can advise and I know I am too new to have been hit by comings and goings yet. Actually I can't help anyone yet either but I hope I will be able to.

    I can really understand about forum fatigue but can I just say how fantastic it is for people like me (actually, probably anyone with questions or thoughts) to have such wonderful and helpful people here.

  8. #8
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    I read the forum from mum's diagnosis but didn't post until after we'd lost her.

    I joined because I felt I might be able to help others with solutions we had found to the problems mum had experienced.

    I've found it difficult to continually see new members join and lose others but then I think what it would be like if there wasn't a forum or people willing to share. An MND diagnosis is a lonely place and it's likely you won't have direct experience of it beforehand so whilst I can, I'll keep checking in and posting. As time progresses there'll come a time when what I've learned is superseded anyway.

    Hopefully treatment and a cure will mean the forum is soon obsolete. Won't that be wonderful.

  9. #9
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    Hello all.

    It is testament to the reciprocal feelings of everyone in the forum, that we do get so upset when we lose folk.
    Over the months, they become part of our family somehow

    I do understand where you are coming from, Steve. I haven't been 100 per cent lately and don't feel up to contributing when I am like that! As you say, when you sit back and look at it, we have lost some good friends this year and welcomed a fair few new ones

    That's the way of it, I suppose.

    But I certainly couldn't do without you guys and gals!

    Much love

    Joycie xx

  10. #10
    Forum Member Katrina36's Avatar
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    I think this is a really nice post in a way... I never in a million years expected to be on a forum like this.. I looked at the forum for a bit before joining,, and it seemed like everyone knew each other so well.. It took a while as it almost felt like I was intruding as I'm not the once suffering from mnd,, it's my dad that has it... And I only look after him.. As much as I can may I add... I know I can't contribute as I'm not the one going through this..... It just helps reading the posts and maybe sharing what my dad goes through or asking advice off people who either have mnd or care for someone with it to help him... And to keep my own sanity (that probably sounds selfish).... All of you in your own way help each other.... Katrina X

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