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    Good day everyone xx

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      A warm, warm, warm Hello to one and all 😘😘

      Yes, I am warm today. Boiler repairman arrived, even rang to say he was running late, replaced the part and we're warm once again πŸ‘πŸ‘

      I was cold for just 48hrs (and moaned!), so my thoughts are with those who don't have the means to be warm, ever... 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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        Glad you’ve got sorted and nice and toasty πŸ”₯ just in time for the snow β„οΈπŸŒ§β„οΈ Xx
        Janette x

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          Ellie smashing about your boiler repair 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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            Nettie Lynne K Thanks. My legs go rigid when they get cold and I had to double my Baclofen over the last 2 days, so it's nice to be able to bend my knees today 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 great that you can now bend your knees and that you’re toasty 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 glad you're back to being warm - although your electric blanket is a GodsendπŸ”₯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 everyone. Back in bed last night after a week sleeping on the riser recliner. The district nurse came and altered some of the settings which has improved things. Still not perfect but hey.
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                    Ellie I hope you had a lovely warm night
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      Good morning all
                      It's all funny

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                        Morning all....Saturday and weather looks awful....Netflix day me thinksπŸ˜˜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 Rosemary6NT View Post
                          Good morning everyone. Back in bed last night after a week sleeping on the riser recliner. The district nurse came and altered some of the settings which has improved things. Still not perfect but hey.
                          That’s great Rosemary. I hope that you now manage much more sleep 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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                            Good morning all. It’s been raining practically all night and still now Linda. Very dull here indeed 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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                              Good day all xx

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                                Originally posted by Rosemary6NT View Post
                                Back in bed last night after a week sleeping on the riser recliner. The district nurse came and altered some of the settings which has improved things.
                                Rosemary6NT May I ask what bed settings the nurse changed - is it a very fancy bed with lots of setup possibilities? 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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