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    #106
    I am in a room with no heating and being called a racist by the staff? Don't make me laugh, oh I can't laugh can I? 😠😠😠
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #107
      Racist? What on earth is going on? Oh Matthew i dont know what to say. Try and stay calm.i know it isn't easy.
      Denise xxx
      when i can think of something profound i will update this.

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        #108
        Ellie they are calling you a liar
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #109
          How you getting on now Matthew.

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            #110
            Originally posted by matthew55 View Post
            Ellie they are calling you a liar
            Well, you must not be dying so, that's good πŸ˜ƒπŸ˜ƒπŸ˜˜
            ​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            .
            ​
            • 👍 1

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              #111
              Originally posted by Jo jo View Post
              Does everyone have to go into hospital when they first have a NIV?
              No, it depends on the hospital - some do, some don't.

              ​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              .
              ​
              • 👍 1

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                #112
                Outpatient
                setup roughly
                given to take home
                expert came to house to house to fine tune
                humidifier came yesterday

                Doug
                Diagnosed April 2017
                • 👍 1

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                  #113
                  Doug Carpenter Hope the humidifier makes your nights much better, Doug x
                  ​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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                    #114
                    Nothing from Matthew πŸ€”
                    when i can think of something profound i will update this.

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                      #115
                      This very much reminds me of my 700days in Salford hospital. Every day was an ordeal and some days were far worse. Complaints are not tolerated and consider yourself lucky to be alive is still the moto it seems. Back in 2013 the hospital leaned on our MNDA to silence me and the thread just like this was closed. I hope that the MNDA can show more spine tomorrow morning.

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                        #116
                        Oh Matthew, I've only just been catching up on the horrible time you are having, so sorry. Big hugs x
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                          #117
                          Wow Graham, 700 days in such a hospital sounds horrific x
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                            #118
                            Originally posted by Graham View Post
                            This very much reminds me of my 700days in Salford hospital. Every day was an ordeal and some days were far worse. Complaints are not tolerated and consider yourself lucky to be alive is still the moto it seems. Back in 2013 the hospital leaned on our MNDA to silence me and the thread just like this was closed. I hope that the MNDA can show more spine tomorrow morning.
                            Wow that’s horrific Graham.

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                              #119
                              I realise we are becoming more concerned about Matthew. I sent him a text earlier asking if he was ok. He simply replied β€œ no problems”. Hope this helps.
                              • 👍 2

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                                #120
                                Let's hope that our MNDA will help in the morning. Be strong Matt. xxxx

                                (Now is not the time to be jealous Denise xxxxx)

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