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    Nice I enjoyed that, thank you.
    I got up at 04.30 for many years and now can't get out of the habit.
    It's all funny

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      4:30....that's early for sure 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.​​​​​​

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        Good morning you professional adapters in this cruel game that is our life. If something seems too difficult we are always here to offer advice, help and love. 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. Thank you LindaB. I think Dorothy Parker takes lot of beating for wit. There's one of hers goes something like: guns are dangerous, gas makes you sick ... You might as well live ..

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            Good morning everyone.

            Keno, 4.30 you are certainly a very early bird. I woke 5.25, took 2 paracetamol, went to the loo, got back into bed and then waited for more sleep. About an hour later dropped off then got up 2 minutes to 8.

            MND Smart st Salford today 2pm so wearing easy off and on clothes again.

            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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              Just when you think you've heard everything. πŸ˜‰πŸ˜πŸ€—βœŒοΈ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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                Lynne K hope all goes well today 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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                  Thanks Linda, me too 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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                    Yes good luck Lynne K xx

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                      I love the last verse.

                      The birds are mating and there are lots of lady birds. Did we miss winter?
                      when i can think of something profound i will update this.

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                        So, it's official... I am Goldilocks 😊

                        Sunday night: bed was too cold.
                        Monday night: bed was too warm.
                        Last night: bed was just right.

                        Great sleep ensued 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.

                        ​

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                          I always knew that you were special Ellie 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 matthew55 View Post
                            I always knew that you were special Ellie
                            Yeah, but there is special and there is special... 😏 I don't want to be the former but I'm starting to wonder about myself these days πŸ₯΄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.

                            ​

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                              Ellie didn't mention the porridge 🀨 cant have goldilocks and no porridge. 😳

                              Still no loo. Plumber coming at 9am tomorrow.

                              Good luck Lynne xxxx
                              when i can think of something profound i will update this.

                              Comment


                                Originally posted by denise View Post
                                Ellie didn't mention the porridge 🀨 cant have goldilocks and no porridge.
                                Diluted with 150ml water and put through tube - all of the goodness, none of the bland taste 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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