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    Good morning my fellow torch beares. When newly diagnosed with MND/ASL it is a very dark and lonely place you find yourself in. We are here to give a light to follow to support, advice,help and love. Respect. 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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      Good morning Mathew and everyone else, a lovely bright morning greeted me here by the window in our living room where I’m now sat on my RR chair 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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        Morning everyone. Lovely sunny day here in Plymouth.

        This is especially for Doug got my boots on with the tassels. πŸ˜‰

        Love to everyone xxx
        when i can think of something profound i will update this.

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          Morning a bit cloudy but sun is breaking throughπŸŒžπŸŒžβ›…β›…
          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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            Maybe you should stay new thread entitled today's weather! 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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              I woke at dark o'clock shivering πŸ₯ΆπŸ₯Ά! Already organised an extra blanket for tonight so I won't be an Early Bird again. Speaking of birds, they've been very busy these last few mornings.

              😘😘

              ​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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                Back when I was normal I always slept in my birthday suit as I got very hot in the night. Now I sleep fully clothed. Got to love MND/ASL! 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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                  Good morning all carers and livers. Except we are all both carers, because we care for eachother, and livers, because we all live with MND/ASL either directly or indirectly. We are together, we are family and we are one. 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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                    Thank you matthew55 🐧 for your uplifting message❀ this morning. Hope you have the best day possible . πŸ₯°πŸ˜˜πŸ€—x

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                      Good morning all xx

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                        Good morning and thanks Mathew x

                        Ellie, I hope that you had a warmer night and your local birds didn’t wake you too early, x

                        Good morning Gordon, Deb and everyone else 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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                          Morning all....I'm late to the party having just got out of bed😲
                          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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                            Good for you LindaB 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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                              Originally posted by Lynne K View Post
                              Ellie, I hope that you had a warmer night
                              In typical Ellie fashion, I overcompensated and woke up sweating like a boxer πŸ™„πŸ€¦β€β™€οΈ I stayed awake for a while but my giant πŸ¦› yawns dislodged my NIV mask, sounding an alarm and my hubby appeared to fix the mask and remove offending extra blanket πŸ‘

                              That was 2am, I woke at 8am, so a good night. Thanks for asking Lynne
                              πŸ€—πŸ˜˜


                              ​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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                                Here's a poem about morning....for all the early birds.

                                A Morning Offering by John O'Donohue

                                I bless the night that nourished my heart
                                To set the ghosts of longing free
                                Into the flow and figure of dream
                                That went to harvest from the dark
                                Bread for the hunger no one sees.

                                All that is eternal in me
                                Welcomes the wonder of this day,
                                The field of brightness it creates
                                Offering time for each thing
                                To arise and illuminate.

                                I place on the altar of dawn:
                                The quiet loyalty of breath,
                                The tent of thought where I shelter,
                                Waves of desire I am shore to
                                And all beauty drawn to the eye.

                                May my mind come alive today
                                To the invisible geography
                                That invites me to new frontiers,
                                To break the dead shell of yesterdays,
                                To risk being disturbed and changed.

                                May I have the courage today
                                To live the life that I would love,
                                To postpone my dream no longer
                                But do at last what I came here for
                                And waste my heart on fear no more.
                                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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