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    #91
    I will later 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #92
      I am sorry things are pants Matthew. Hopefully you will be home soon x
      I don't have a mask so I can't help but stay positive x

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        #93
        IMG_20210227_214324.jpg here you are.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #94
          Have they let you out Matthew? Is the Nippy any use? Did they try different settings? If you're tired don't bother replying.
          Each day is made easier with a bit of humour.

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            #95
            I'm still in and trying tonight
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #96
              I hope it's better than last night then.
              Each day is made easier with a bit of humour.

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                #97
                Ellie just looking at mine and my settings are not much different to Matthews and mine is in the PCV mode also πŸ€·β€β™€οΈ X
                Janette x

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                  #98
                  Janette, it should really be in PSV mode, it's all to do with how the air (breath) is delivered and how much work you're left to do.
                  ​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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                    #99
                    Matthew, really hope you get sorted tonight. Take care mate.

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                      Does everyone have to go into hospital when they first have a NIV? My partner had an overnight breathing test and they are contacting us on Monday as they said it wasn’t very good. He is having lorazepam and morphine at night to help with his breathing and think they may be looking at giving him NIV very soon. Hope Mathew finds it works for him ❀️❀️❀️

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                        It's pathetic. I'm in a four bed ward with one other chap. He is 79 and partially deaf. He came in with breathing problems. He is on NIV for the first time just like me and his alarm has just gone off for the fourth time tonight. I have given up on mine because I take three breaths and my throat closes up. Ellie is spot on as usual and I will show her post to the doctor in the morning which is a very long way away. 😠
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          No one here knows about MND and I want to make an official complaint
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            Morning Matthew
                            I'm sorry you are having such a bad time. Hopefully your complaint will make it better for someone else.
                            love and hugs Denise xxx
                            when i can think of something profound i will update this.

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                              Fat chance. Just had a 12 year old doctor in training shoes telling me it's really my fault 😠😊😊
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                                How can it be your fault? You went to them for help. What a cheek. Xxx
                                when i can think of something profound i will update this.

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