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    Living with MND

    Not every change is physical with a terminal illness. I'm afraid that with freezing hands and feet, out of control saliva, weakness and unable to speak means I'm a kettle that boils eventually. If and when I decide that I've had enough to end it I will tell you guys. Thanks for the kind words but words are just words eh? 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Sometimes words really do what other things can't.
    my feet and hands also freezing I was thinking hand warmers in both gloves, boots and bum pockets. My nose is like a tap. We love you come on.
    Denise xxx
    when i can think of something profound i will update this.

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      #3
      Ok come on tell us what happened? What did they do? How do you feel? Did it work? πŸ™„
      when i can think of something profound i will update this.

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        #4
        I think I need to hug you all because I’m the opposite always too damn hot πŸ₯΅ all the time!!! X
        Janette x

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          #5
          Oh Jeanette must be nice in winter not so good in summer xxxx
          when i can think of something profound i will update this.

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            #6
            It’s not even nice in winter I sleep with a fan on all the time....2 in summer lol xx
            Janette x

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              #7
              Oh you really are a bit of hot stuff! Go girl!
              I know it's not nice. How odd that everyone else is cold. Do you think its mnd or hot flushes I know they are horrible. Soya milk helped with that but no doubt that doesn't work for everyone.
              I'm freezing I could do with a hug from you 😁😚
              when i can think of something profound i will update this.

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                #8
                I don’t think it’s hot flushes because it’s all the time, I used to work in a sausage factory which was freezing for everyone else who had layers on, me on the other had just a T-shirt on under my overall and sweat would pour out of me πŸ₯΅ my poor hubby sits there freezing 🀣πŸ₯Ά x
                Janette x

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                  #9
                  A very warm hug from me πŸ”₯πŸ€—
                  Janette x

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                    #10
                    I think you need a new thermostat πŸ˜„ . I know I went through a stage of always being hot. I'd throw the bed clothes off and turn the heating off and wear a lot less than everyone else but I had it for a couple of years and it went. Could do with it now. Would be great to turn it on and off.
                    you know those monks that sit in the cold and meditate in next to nothing? Perhaps that was you in a past life 😁
                    when i can think of something profound i will update this.

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                      #11
                      🀣🀣🀣
                      Janette x

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                        #12
                        I don't know if it is the MND or my age, but currently am able to put up with lower temperatures.
                        Although I can feel the cold on my arms, it does not bother me. Is it because my arms do not seem to have the shivering mode, due to not having much in the way of muscles? Who knows
                        Diagnosed 2nd Jan 2020
                        Both arms/shoulders affected, left worse than right.
                        Progressive Muscular Atrophy suspected

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                          #13
                          Beemer I do whole body shivers now when I feel cold - my carers think I'm trying to get their attention 😏
                          ​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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                            #14
                            Dentist and Janette, hugs from me πŸ€— πŸ€— πŸ€— πŸ€— 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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                              #15
                              my late Husband Mick was always hot, even if it was cold he would open the lounge bay window

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