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    Hot weather

    Sadly the hot temperature means I can wear a vest top. This means I see the sorry state of my arms and worse my right arm is in constant motion. I didn't think I would miss the winter! πŸ€”πŸ˜‰πŸ˜žπŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    lol
    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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      #3
      Please let it not be a string vest 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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        #4
        Yes Matthew , I too am at the stage that it’s best to cover my body up!Even my feet swell up now.We can still enjoy the good weather though and wear what we like in the garden.
        Hope you have had a good day
        Best wishes
        Mary

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          #5
          Matthew who cares what others see. Enjoy the sun and get your vitamin d. I put my shorts on if the don't like it they can wear their masks over their eyes 😎

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            #6
            Go for it Matthew and enjoy the sunshine.🌞 It sounds like your armsπŸ’ͺ could be in competition with my spindly legs.🦡 Vitamin D is good for us !

            However I'm with Ellie on a string vest ! X

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              #7
              It's a top from Universal Studios Florida and it is me that doesn't like looking at them.πŸ˜žπŸ˜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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                #8
                Avoid the mirror. My daughter has a mirror in the shower. I wear shower cap over my face.

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                  #9
                  I wonder who ever thought a string vest was a good ideaπŸ˜… Talking heat though, my feet are always freezing cold, so hot weather is the one time they thaw out...but, my already bad walking/balance is far worse in very warm weather. Odd. Makes no sense!πŸ™„ I'm the opposite, I have to watch my weight as less mobile. Strange condition this.

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                    #10
                    We had a nice sunny drive out to Marsden Moor, stopped in the car park for about 90 minutes looking at the views down to the reservoir and other side of the valley. We had a double 99 ice cream. I enjoyed it despite aware that my stomach doesn’t accept dairy. So consequences later (but took something to counteract that) Lynne
                    Last edited by Lynne K; 5 June 2021, 18:58.
                    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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                      #11
                      I will wait to do trips out in a chair as even a short walk wipes me out.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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                        #12
                        Do any of you experience being very hot? Hubby is always hot eventhough his skin feels cool to touch. Consultant said the constant fascilations (forgive spelling) create internal heat.

                        I on the other hand am usually cold, so the intensity of our incompatibility with temperature has increased. I now just put an extra layer on or snuggle under a blanket. Don't want to moan at him now.πŸ™‚

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                          #13
                          MMG I think some of us are always hot, others are usually cold - few people with ALS seem to have good heat regulation πŸ€”

                          I am usually ice cold, but when I sit out in the sun, I just melt! No happy medium. (I rarely get fasciculations these days) 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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                            #14
                            I go up and down all day! 😍😘😁😒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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                              #15
                              Stephen has two quilts on his bed and rarely takes his jumper off.

                              πŸ˜€

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