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    #1

    Meeting report

    Well I just had my meeting with the Care In the community lady and told her all my problems. A manager from the agency was supposed to be here but she never showed up! I also might be getting a PA and I know who I want.
    Time will tell how effective today has been. Not that I have any to spare. 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
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    #2
    Shame that someone didn’t show up but good that you’ll get a PA Mathew, love Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.
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      #3
      It was actually a good thing as it showed the agency to be as incompetent as I said it was. Plus the woman who wanted to meet her controls her pay cheque! 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
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        #4
        Sounds fairly positive @Matthew55.
        Without being patronising well done you for managing all this single handedly ...βœŠπŸ‘πŸ‘Œ

        ​​​
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​
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          #5
          Originally posted by matthew55 View Post
          Well I just had my meeting with the Care In the community lady
          Forgive my ignorance, but is that CIC lady council staff, NHS, or what?

          Shame on that care agency manager for not bothering to turn up...

          Truly hope you get your PA and everything works out how you want it to 😘😘😘

          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
          ​
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            #6
            I think she's a power unto herself. I think she carries a big gun. 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
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              #7
              My bad. NHS Wigan. High up though.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
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                #8
                Originally posted by matthew55 View Post
                My bad. NHS Wigan. High up though.
                Keep her on-side, great to have her as an advocate. xx

                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                ​
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                  #9
                  She was incredulous that I wasn't a priority on calls. 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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