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    #61
    I may have misremembered but whatever it is it payed for my v pillow and all my care. I still get PIP and mucho UC! πŸ€‘πŸ˜ŽπŸ˜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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      #62
      All the best for tomorrow mate and for the settling in period with your new carers 🀞🀞😘😘😘
      ​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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        #63
        Thanks buddy πŸ˜˜πŸ˜πŸ‘ŒπŸ˜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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          #64
          Just met three of my team and they are great! πŸ‘πŸ˜πŸ‘€πŸ‘Œxx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #65
            Originally posted by matthew55 View Post
            Just met three of my team and they are great! πŸ‘πŸ˜πŸ‘€πŸ‘Œxx
            That’s great Mathew. I haven’t had an assessment yet but hopefully soon as Steve will get frazzled and I’ll be the one person that he can take it out on (he needs someone to let steam off on and I’m not up for it but sometimes it gets thrown my way) xx
            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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              #66
              That’s really great Matthew. Lynne hopefully it will be us soon too, hang on in there xx
              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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                #67
                Lynne K sorry your partner is 'frazzled'...he needs a carers assessment where this can be adressed...you shouldnt have to take the brunt of it...take care πŸ™
                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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                  #68
                  matthew55 I couldn't be happier for you. 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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                    #69
                    The difference is amazing. πŸ˜πŸ‘ŒπŸ˜˜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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                      #70
                      Originally posted by LindaB View Post
                      Lynne K sorry your partner is 'frazzled'...he needs a carers assessment where this can be adressed...you shouldnt have to take the brunt of it...take care πŸ™
                      Yes I know Linda. I’ve been waiting ages for a social care assessment. It can’t come soon enough and fingers crossed that carers will be available because Kevin Winch of Home Instead said that he can’t provide carers at the time because lots of his staff are isolating and he said other agencies will be the same xx
                      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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