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The voice in my headr

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    The voice in my headr

    I've just read a book called "The voice in my head is perfect" by Lindy Jones, a Bulbar MND sufferer. It really rang true for me. Everything in my head expresses my personality and sense of humour ( I like to think, witty !! ๐Ÿ˜). I enjoy banter and communicating with others. My profession involved a lot of it. But now, I think perfectly normally of what I want to say, but when I open my mouth it all comes out wrong. Strained, very slow, low pitch, compromised consonants, and people just don't have the patience to "get it". A huge part of me and my personality feels gone forever. Does anyone out there share this feeling of loss?
    Love Lizzie.

    #2
    Oh Lizzie thank you for sharing that. I sometimes get so frustrated with my husband when hes trying to talk to me. Im ok must of the time but i admit when im trying to focus on something and hes trying to speak im perhaps not as thoughtful as i should. New years resolution: take more time to listen. ๐Ÿ˜š

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      #3
      I hear my voice in my head and when I try and speak I think I'm speaking the words only noise happens. Frustrating is too small word for it ๐Ÿ˜ž

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        #4
        I fully understand and concur with your feelings Lizzie. I have written about this before and as you say our voice is our personality. Regardless of the benefits of speech apps they canโ€™t inject humour, anger or any other emotions.
        Iโ€™m going to do this even if it kills me!

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          #5
          Originally posted by Barry52 View Post
          Regardless of the benefits of speech apps they canโ€™t inject ... anger ...
          I think my children would disagree with you on that, Barry ๐Ÿ˜‚
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

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            #6
            Iโ€™m finding it very frustrating in that what comes out of my mouth does not make sense or others interrupt or decide I am saying something very different. I find it so hard, and I keep thinking why bother.

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              #7
              I share it wholeheartedly Lizzie. As a fellow sufferer with bulbar symptoms it's been the most frustrating and upsetting part of the illness to me. My wife always seems to interpret my attempts at speech in the wrong way, leading to more stress and confusion. I talk to my friends and family more by messaging now than by mouth. I think I could cope with the illness much more easily if only I could talk, and be understood.
              Each day is made easier with a bit of humour.

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                #8
                Originally posted by Ellie View Post
                I think my children would disagree with you on that, Barry ๐Ÿ˜‚
                Iโ€™m guessing Ellie that you have a stare which says it all x
                Iโ€™m going to do this even if it kills me!

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                  #9
                  Yes this happens to me itโ€™s beyond frustrating!!!! Canโ€™t have the banter with my other half anymore itโ€™s lost in translation, canโ€™t even sing along to a song, but keep smiling ๐Ÿ˜Š
                  Janette x

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                    #10
                    On the plus side I couldn't say something that I would have regretted ๐Ÿ˜Š
                    Copyright Graham

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                      #11
                      I did more damage with words than fists. Maybe this is my punishment? ๐Ÿคจ๐Ÿ˜Šx

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                        #12
                        It helps to get your views. Thanks all. x

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