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    #16
    I have asked for for a mixed team and I don't know how many but I will always get the same ones. They are being PEG and Pump trained. They have other MND livers on their books. I can't wait. πŸ“šπŸ˜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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      #17
      matthew55 thats great xx
      Last edited by Lynne K; 23 December 2021, 20:22.
      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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        #18
        So pleased for you Matthew. That's great news and fantastic that its given you a boost. Xxx 😘πŸ₯°πŸ€—

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          #19
          Hi Matthew, I really hope this new care arrangement works out for you.I hope they have agreed with you the tasks to be done and understand things change with MND .
          4 calls a day of one hour duration is a good start.There will be a period of you getting to know the carers and give versa.
          Lets Hope this gives you the support you need.
          Make sure you get contact details for out of hours and normal day time hours to email/ text.
          Really good news.
          Best wishes
          Mary x

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            #20
            matthew55 I know you said it's small Care Agency but do the carers clock in and out via an App, so the company is alerted automatically of any 'no-shows'? 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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              #21
              Fantastic news Matthew. πŸ€—πŸ˜Šxx

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                #22
                This is a similar experience to what I had. Care agencies struggle to find the staff to cope with caring for MND. It is complex care, particularly when non-verbal. Frustration on both sides occurs.

                A part Direct Payments option is better to maintain consistency of care but the cost is management of the DP.
                Copyright Graham

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                  #23
                  I can only suck it and see although the manager I saw said that if I phone the out of hours number and don't say anything and hang up they will text or email me straight back. 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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                    #24
                    Sounds promising Matthew, I hope it all goes well
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #25
                      Excellent news Matthew
                      Richard

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                        #26
                        this is sounding very positive matthew. the christmas fairy has been. xxxxxxxxxx
                        when i can think of something profound i will update this.

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                          #27
                          matthew55 what’s the name of your care agency Mathew please? I’m really struggling now so need help. Thanks, 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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                            #28
                            They are called Right at Home and are based in Loughton
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #29
                              matthew55 thanks, out of my area 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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                                #30
                                Maybe if you contact them they could recommend someone in your area?
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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