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    #16
    Still say freeze a small hot water bottle....lovely to rest your feet on

    Freeze a large bottle of water stand it in front of a fan....cools the air a bit 😎

    Or a cold wet flannel wherever needed

    I keep blinds closed too...try to keep the heat out 😎
    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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      #17
      Admit it you've got nothing on and don't want to frighten anyone! πŸ˜‚

      yes best to keep doors windows and curtains closed though seems such a shame when we have no idea how long it will last.
      when i can think of something profound i will update this.

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        #18
        Originally posted by denise View Post
        Admit it you've got nothing on and don't want to frighten anyone! πŸ˜‚

        yes best to keep doors windows and curtains closed though seems such a shame when we have no idea how long it will last.
        That would indeed be frightening 😱
        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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          #19
          Well that's one good thing with having a PEG, easy to keep your hydration level topped up. x
          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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            #20
            Very true Heather - keep it up πŸ‘πŸ‘ 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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              #21
              Just pumped 1 ltr water πŸ‘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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                #22
                Ugh.... even using NIV, I'm struggling to breathe on these warm, muggy nights 😐 I even tried putting a fan near the air intake vent of the Nippy, to no avail - roll on fresher nights! 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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                  #23
                  I use a large ice pack wrapped in a zip lock bag and a towel under my pillow at night. Gets so hot in Florida, you can reach under your pillow and pull it into your chest when it's really miserable. Hope this helps.

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                    #24
                    That's a good idea. Worth a try
                    when i can think of something profound i will update this.

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                      #25
                      Originally posted by matthew55 View Post
                      Just pumped 1 ltr water
                      πŸ‘
                      Which reminds me... how is the catheter working out during the day? 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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                        #26
                        It's brilliant!!! 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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                          #27
                          Someone suggested rice in a sock put in the freezer then it can be used to fit anywhere awkward. Presume they mean uncooked rice 😁
                          when i can think of something profound i will update this.

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