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    Finally something is happening

    I'm meeting the boss of a new, smaller and more expensive care agency tomorrow. Better late than never eh? 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

    #2
    Good luck Mathew 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.

    Comment


      #3
      matthew55
      Forum Member
      matthew55 sounds promisingπŸ‘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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        #4
        Yeah,here's hoping mate

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          #5
          Originally posted by matthew55 View Post
          I'm meeting the boss of a new, smaller and more expensive care agency tomorrow. Better late than never eh? πŸ˜·πŸ€’πŸ€•πŸ˜xx
          I hope it goes well

          Comment


            #6
            That's great news mate, hopefully you'll get the best Christmas present ever 🀞🀞

            I haven't been able to read as many posts as usual in recent days, so do I take it that the showdown meeting with current agency yielded nothing? 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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              #7
              The meeting was who could tell the biggest lie and be believed. 🀬🀯😁😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                No tears will be shed when you move agency so...

                Have you anybody attending this meeting with you? xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  No just little old me and I. 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


                    #10
                    No Karen available?

                    I think though you know what you want, and do not want - you're wiser to their potential for trickery 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


                      #11
                      Just had my meeting with the new agency and I think it means you will have the pleasure of my company a bit longer. Four visits a day of an hour each starting first week of January. Housework, meds given, pump set up the list goes on. Feel better about life now. πŸ“ƒπŸ‘πŸ‘†πŸ‘Œβ€οΈxx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        Oh and a dedicated team to boot. πŸ˜πŸ˜πŸ˜πŸ˜πŸ˜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


                          #13
                          matthew55
                          Forum Member
                          matthew55 sounds fab about your new agency 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.

                          Comment


                            #14
                            matthew55
                            Forum Member
                            matthew55 sounds like you managed it all very well!! Great news and really glad it's lifted your spirits....couldnt be more pleased for youπŸ‘πŸ»πŸ‘πŸ»πŸ‘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.​​​​​​

                            Comment


                              #15
                              Originally posted by matthew55 View Post
                              Just had my meeting with the new agency
                              Four visits a day of an hour each starting first week of January.
                              That's fantastic news Matthew πŸ‘πŸ‘πŸ‘

                              Do the carers have to be trained in on using the pump, giving meds and flushes through the feeding tube or are they already fully trained?

                              Originally posted by matthew55 View Post
                              and a dedicated team to boot.
                              That's the only way to have it with complex cases like ours.
                              How many carers will be on your team?

                              A Christmas Miracle πŸ˜‰πŸ˜ and a great start to 2022 πŸ˜˜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

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