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  • matthew55
    Forum Member
    • May 2020
    • 5794

    Hot weather

    A simple way to cool down quickly is to hold your wrists under a cold running tap for a minute or so. Or if that's not possible have someone put your hands and wrists into a bowl of iced water. πŸ‘πŸ’¦πŸ€“πŸ˜Žxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
  • Lynne K
    Forum Member
    • Nov 2017
    • 2614

    #2
    Good idea Mathew, 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.

    Comment

    • denise
      Forum Member
      • Jun 2020
      • 6688

      #3
      feet in cold water is good. even just bare feet.
      ice lolly down your t-shirt.
      pants in the freezer is good. doesnt stay cold for long but just for a while its wonderful.
      freezer things that go in the icebox just hold them or give them a big hug.
      better still put feet in ice box
      when i can think of something profound i will update this.

      Comment

      • LindaB
        Forum Member
        • Jun 2021
        • 2710

        #4
        πŸ’‘I have a small hot water bottle that I freeze❄
        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.​​​​​​

        Comment

        • Ellie
          Forum Member
          • Oct 2012
          • 12572

          #5
          I know I always bang on about hydration πŸ˜„ but please, please make sure you're all getting enough fluids daily, preferably water and no, alcohol does not count 😍😍😍

          ​Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
          .
          ​

          Comment

          • matthew55
            Forum Member
            • May 2020
            • 5794

            #6
            Alcohol dries you out.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment

            • denise
              Forum Member
              • Jun 2020
              • 6688

              #7
              Does Guinness count?
              when i can think of something profound i will update this.

              Comment

              • matthew55
                Forum Member
                • May 2020
                • 5794

                #8
                I'm afraid so me darling 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

                Comment

                • denise
                  Forum Member
                  • Jun 2020
                  • 6688

                  #9
                  2 glasses of Guinness. 2nd glass to make up for damage done by the first πŸ˜‚
                  when i can think of something profound i will update this.

                  Comment

                  • Ellie
                    Forum Member
                    • Oct 2012
                    • 12572

                    #10
                    denise Don't know how you can drink Guinness in this heat, even if it's ice cold. 😡

                    Wonder if you can freeze it and eat it like an ice lolly?? xx
                    ​Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                    .
                    ​

                    Comment

                    • denise
                      Forum Member
                      • Jun 2020
                      • 6688

                      #11
                      Hey Ellie thats worth a go.

                      How would I get it out of the can? xxx
                      when i can think of something profound i will update this.

                      Comment

                      • denise
                        Forum Member
                        • Jun 2020
                        • 6688

                        #12
                        I haven't had a Guinness for years. Or sausages or bacon. You can imagine what we are piggin out on.
                        when i can think of something profound i will update this.

                        Comment

                        • matthew55
                          Forum Member
                          • May 2020
                          • 5794

                          #13
                          How many ways can I say this? Stop with the food references, it's mental torture. 😠😑🀬😀
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment

                          • Nettie
                            Forum Member
                            • Oct 2019
                            • 943

                            #14
                            Originally posted by matthew55 View Post
                            How many ways can I say this? Stop with the food references, it's mental torture. 😠😑🀬😀
                            Yes I concur Matthew it’s so not fair πŸ₯ΊπŸ˜€
                            Janette x

                            Comment

                            • denise
                              Forum Member
                              • Jun 2020
                              • 6688

                              #15
                              Sorry guys
                              when i can think of something profound i will update this.

                              Comment

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