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    🌞🌞 and glistening frost greeted me this morning after a great sleep, with electric blanket ramped up because late yesterday afternoon our boiler decided to take a holiday - of course it waited until the temperature dropped πŸ₯ΆπŸ₯Ά Hoping it will be fixed very soon 🀞🀞

    Happy Wednesday folks 😘😘
    ​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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      Oh no Ellie, Sod’s law! Hope you can get it fixed soon, and thank goodness for electric blankets 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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        Good day everyone xx

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          I was asleep by eight and woke at six. I don't believe it! 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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            Originally posted by Ellie View Post
            🌞🌞 and glistening frost greeted me this morning after a great sleep, with electric blanket ramped up because late yesterday afternoon our boiler decided to take a holiday - of course it waited until the temperature dropped πŸ₯ΆπŸ₯Ά Hoping it will be fixed very soon 🀞🀞

            Happy Wednesday folks 😘😘
            Boilers always choose their time don’t they. I’m glad that you could keep warm 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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              Ellie hope the boiler is fixed❄❄❄❄the family will be fighting to get in under your electric blanket if notπŸ”₯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.​​​​​​

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                Originally posted by LindaB View Post
                the family will be fighting to get in under your electric blanket if not
                I'd like to see them try... 😍😍😍😘

                ​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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                  Oh no Ellie . Hope your boilers fixed soon and that you stay warm and toasty under your electric blanket. XxπŸ˜˜πŸ€—

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                    Good morning my fellow travelling companions. It's a strange road with many twists and turns, ups and downs and the distance is different for all of us. The best bit is we travel in such good company. βœŒοΈπŸ™πŸ˜β€οΈ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
                      It's all funny

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                        Morning everyone. Its absolutely freezing in my kitchen. A group hug under ellies blanket is needed. 🀭πŸ₯°πŸ˜˜πŸ€—πŸ€—πŸ€—πŸ€—
                        when i can think of something profound i will update this.

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                          Good morning all. Only 3 hours sleep for me. Difficulty getting to sleep then up at 4 to try take more pills. Went to loo, did teeth and back to bed. Couldn’t get back to sleep I’ve got an appointment this afternoon at Fairfield to see foot person. I’ll be nackered. Lynne 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 one and all....the frost looks very pretty looking through my window.


                            ​​​​@Lynn K sorry you're going through the mill at the moment. Sounds like you'd really benefit from liquid medicines...which I'm sure you'll get sorted when you see the SALT team. I hope you get chance to rest in your R&R chair and maybe have a nap. Take care xxx
                            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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                              LindaB thanks Linda, went to loo independently then back to bed to keep warm while Steve got up and made himself a cup of tea. He didn’t sleep well either apparently. I hope to get a couple of hours on RR chair but don’t know when or how.

                              I was on gp site 8am and sent 3 messages: one about codeine not enough, one about the need for a catheter and one about chewing and swallowing issues, reminding them I can’t eat dairy. Fingers crossed for results 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. My sister-in-law has given me an electric rug to put over my legs when sitting, so cosy! 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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