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    Originally posted by keno View Post
    Wonderful
    Carer named Tracey, 59 years old. She put me at ease right away.
    washed my hair, washed me, and made my bed.
    Oh Ken, that has made my day πŸ€— Will Tracey come everyday or has she an equally wonderful colleague? 😘😘

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

    ​

    Comment


      Originally posted by matthew55 View Post
      I couldn't face going back up so slept sitting up on my trusty sofa.
      Any excuse to snuggle with Dolly πŸ‘ πŸ˜‰πŸ˜

      Could you get a second suction machine, so you can have one per floor, or is that pushing it... 😘😘
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      ​

      Comment


        I have a second machine I just haven't got round to setting it up 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


          Originally posted by matthew55 View Post
          I have a second machine I just haven't got round to setting it up
          Nuff said πŸ™„πŸ˜±πŸ˜˜

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

          ​

          Comment


            I just got the carers to set it up
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment


              Originally posted by matthew55 View Post
              I just got the carers to set it up
              Hallelujah πŸ‘πŸ‘

              No more unsafe midnight excursions... 😘😘
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                Originally posted by Ellie View Post
                Oh Ken, that has made my day πŸ€— Will Tracey come everyday or has she an equally wonderful colleague? 😘😘
                She is regular for 6 days.
                Her boss is coming asses me tomorrow. I no longer want a male carer.
                It's all funny

                Comment


                  Originally posted by keno View Post
                  She is regular for 6 days.
                  Her boss is coming asses me tomorrow. I no longer want a male carer.
                  Great stuff, hope the meeting goes well.

                  Dare I ask Ken, did you figure out who is paying for the carers - you or 'them'? 😘😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    Originally posted by Ellie View Post

                    Great stuff, hope the meeting goes well.

                    Dare I ask Ken, did you figure out who is paying for the carers - you or 'them'? 😘😘
                    Not yet
                    It's all funny

                    Comment


                      keno glad to hear you had a positive experience with your carer. I had my first carer visit today, she helped me in the shower and get dressed. I too was apprehensive but all went well. She also changed the sheets on my bed and sorted out the kitchen. It is good to have made that first step.
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                      Comment


                        Originally posted by Heather R View Post
                        Rosemary6NT glad you have a view of trees and sky from your bedroom window, how lovely. I am being particularly comforted at the moment by beautiful spring flowers. Last night about 3am, I was feeling definitely time for those advanced decisions, after a horrible few weeks with the trauma of cataract operation (when they only agreed to my using ventilator literally just before going into the operating theatre), and then not being able to shake off a chest infection despite being on my second antibiotics. Roll on spring and good weather xx
                        You are very brave xx
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          Morning everyone. Looks like I'm the first. I really wish I could stop waking up at 1.30am. anyone has any ideas? I had a couple of 3am and 4am but I'm back to the usual 😟
                          when i can think of something profound i will update this.

                          Comment


                            Good morning. A Little better this morning so just another day to endure. Are you with me? 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


                              Did you see that in paper about bacon sandwiches with marmalade instead of sauce? I haven't tried it but ....
                              when i can think of something profound i will update this.

                              Comment


                                Good morning all.
                                It's all funny

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