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    A few hours

    Last night I took pills and woke up at one, two, three and gave up, and got up, at four. My nose wouldn't clear so at eight I was online asking my GP for help. Since then my nose has completely cleared and I am mellow again. It's always worth it to wait. πŸ˜‰πŸ˜πŸ˜πŸ€—xxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    The annoying thing is I find my nose is blocked when I lie down. ok when I get up. If my nose is running it stops, when I can eventually get to sleep, but starts up when I wake up.
    when i can think of something profound i will update this.

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      #3
      Disturbed sleep is not nice.Since my NIV I only manage three hours before waking.Then usually settle for another 3 hours.Never seem to get a long stretch of unbroken sleep anymore.I guess I will get used to it.
      Best wishes Matthew for a better nights sleep.
      Mary

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        #4
        matthew55 And wasn't the sunrise beautiful! I was awake too, pity we can't talk, could have phoned each other for company πŸ˜„πŸ˜„
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
        .
        ​

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          #5
          I really like the total silence πŸ˜πŸ˜πŸ€—πŸ˜‚xxx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            As long as those gnomes aren't up partying with a boombox. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
            .
            ​

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              #7
              Don't know if it helps, but, nursie told Dad to prop up with pillows to help sleep because of being blocked up (in his case throat filling with secretions), so not lying flat... but I bet you all know that already....
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                #8
                I sleep on four goose down pillows! In all seriousness of my nose don't work my throat gets blocked and I can't breath πŸ˜ŸπŸ˜’πŸ˜πŸ˜€xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  Ellie your response to Matthew made me smile but in a serious note could your eyegazer actually make a phone call? can your voice be heard down the phone? - I ask as I have organised Albert to do the Voice Banking, as yet hes not showing any interest and is not doing it - probably because his speech is ok at the mo but who knows how much longer for
                  Husband Albert diagnosed PMA Feb 21

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                    #10
                    Matthew how do you stay upright on those pillows? I just slide down the bed.
                    when i can think of something profound i will update this.

                    Comment


                      #11
                      Originally posted by Suefromwakey View Post
                      ... could your eyegazer actually make a phone call? can your voice be heard down the phone?
                      I don't have a SIM card, so no phone calls per se, nor WhatsApp, but I can video call over WiFi if necessary (tends not to be for a chat!) and yes, the other person can hear my text-to-speech output from the PC.

                      Some tablets and PCs have a SIM card drive, or there are adapters which allow a SIM to be used in a PC, so he could text or phone that way. xx

                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                      .
                      ​

                      Comment


                        #12
                        Originally posted by matthew55 View Post
                        I sleep on four goose down pillows! In all seriousness of my nose don't work my throat gets blocked and I can't breath
                        By any chance could you be allergic to your sumptuous posh pillows??
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                        .
                        ​

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                          #13
                          hey ellie you might be onto something there. as an asthma sufferer we are told synthetic pillows and bedding.
                          when i can think of something profound i will update this.

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                            #14
                            Luxury costs. It's all in how you stack them πŸ˜‰πŸ€­πŸ˜πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              I shall have to try harder. I always find myself at the bottom of the pile. 😊
                              when i can think of something profound i will update this.

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