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    Disclosure

    I know I joke but this forum really is the only contact I have with the outside world. When I was young my parents moved around alot and I went to thirteen different schools in thirteen different places hence I avoided making friends. That never bothered me before but being mute it's often scary. Twitter and the other normal social platforms are too much information and too impersonal for me. So that leaves here. Oh and it's the only place where no one treats me with sympathy or pity and not as a moron. I love you guys more than you know, or maybe now you do. Have a safe day. x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    I am with you all the way. I don't think I would cope at all. I feel so alone you wouldn't believe. At least I know I can look on here and have someone to share with.
    love you all
    Denise xxx

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      #3
      I second your thoughts Matthew. My 8 year journey without this forum would have been hellish. Every time you have a set back the guys on here pick you right up again.

      Love and hugs to all.

      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Awww mate, I'm tearing up...

        Nobody really gets what we're going through, that why anybody and everybody affected by an MND is welcome to hang out here.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          I totally get this ! Sometimes its as if the only people who understand the difficulties are on here.

          That said it must be hard for friends and family because there's a fine line between trying to understand and showing pity. ( noooo !) I think people don't want to think about the practical and emotional difficulties we face on a daily basis. Who would ?

          Its good we have each other on here.💕
          Love Debbie X😘

          Comment


            #6
            I agree, and there is a difference between pity and empathy. We all have very different experiences of this illness, but even at its best, it's a sledge-hammer to what we had before. I remember a young guy with MND, no longer with us sadly, saying 'today will always be my best day' because with this, you don't improve next week or next year....And it's good to have the best company on your best day🙂

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              #7
              I couldn’t agree more. We have each other and that is so precious. Matthew, you’re a star, and so brave to disclose your innermost feelings. Like you, I moved around a lot when I was younger and never quite “settled” into long friendships. I feel I can trust you guys with my thoughts and feelings. Love comes from sharing, even in the most tragic and difficult of circumstances. Love to you all.
              Lizzie x

              Comment


                #8
                I agree totally, I don’t always post on here because I don’t always know how to put what I want to say, but I try and look in every day just to see how everyone is doing and I know I can always find the answer to almost anything on here from you knowledgeable folk Janette x
                Janette x

                Comment


                  #9
                  Hi I never post on here as I don't have Mnd but my friend was diagnosed 3 years ago. I just wanted to say I read all of your posts daily and it really helps me.

                  I admire you all so much and the support you all give. Your humour often makes me giggle.

                  My friend is 36 with two young kids and it's the most devasting illness I can think of. She is such a trooper and still manages to crack a smile on her darkest days.

                  Thank you so much

                  Xx
                  ​​

                  Comment


                    #10
                    Why doesn't your friend join us? We talk to anyone 😃x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Yeah we are past being fussy! 😁😄😉

                      Comment


                        #12
                        Welcome Lullah and thanks for your lovely post.

                        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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