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    #16
    Agree about losing weight when first diagnosed, this was definitely due to anxiety.
    I am mainly affected in my walking, so less mobile. Appetite for me slightly reduced but that's partly, I think, due to being less active and also consciously keeping an eye on my weight as have put weight on over last 9 years. No problems eating but, conversely, used to have a sweet tooth but now prefer savoury!πŸ€·β€β™€οΈ
    Ellie ... those little Snowballs in a bottle were fabπŸ˜„

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      #17
      For me too post initial diagnosis appetite was virtually nil due to anxiety. Previously being a real food lover.
      My appetite improved however not great...so I'm eating because I know it's vital. Helps me to have plenty of easy snacks in the fridge...and if all else fails good soup. I do have some food supplement drinks (just started) so trying to add a bit of the weight lost.
      I think mood for me is key....I had said to neurologist that emotional lability wasn't present for me however I'm thinking it has hit. Had a day this week when a really minor mishap about a prescription (for food supplement drinks) reduced me to tears - only for a minute - but reflecting on that and how that's so 'not me' I need to address it. I
      Might be time for anti depressants...

      Snowball drink was allowed at Christmas even as a child!! Just one weak version. Then progressed to port and lemon. Hic Hic🍸🍷🍹
      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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        #18
        Originally posted by LindaB View Post
        I had said to neurologist that emotional lability wasn't present for me however I'm thinking it has hit. Had a day this week when a really minor mishap about a prescription (for food supplement drinks) reduced me to tears
        The Neuro may still be right LindaB

        Whilst it doesn't take much to tip us over the edge, it could be more a response to (dare I say...) feeling vulnerable, than a pure EL response - if the tears turned into guffaws, that's different, but you may be safe yet 🀞🀞

        I do the sobs then the guffaws and sod any onlookers (this is ME, like it or lump it 😏) 😘
        ​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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          #19
          Ellie it could be just that....a response to feeling vulnerable. For a control freak its not easy.
          I'll keep an eye on myselfπŸ‘€. 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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            #20
            Seriously my happy pills stopped me crying. πŸŽŠπŸ€—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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              #21
              Originally posted by LindaB View Post
              For a control freak its not easy.
              Oh do I know, sister 😏😘
              ​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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                #22
                Snowballs oh my gonna have to get some of that. Wasnt it advocate or something like that. My mum used to drink it.

                Just went out for lunch. He had pasty, huge chips, my thick slices of toast, coffee and an iced bun.

                πŸ₯°πŸ˜˜πŸ˜―
                when i can think of something profound i will update this.

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                  #23
                  Ellie We still make them in this household. Advocaat has been cheap in Sainsbury’s over the summer, but it will be getting dearer now as most people consider it to be a seasonal drink.

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                    #24
                    Originally posted by denise View Post
                    Just went out for lunch. He had pasty, huge chips, my thick slices of toast, coffee and an iced bun.
                    Is that so as the next time you fall down the stairs you'll be so well padded that you'll bounce ?? πŸ˜‰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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                      #25
                      LindaB I too was allowed snowballs at Christmas as a child and if I was unwell, my mother would give me a glass of sherry. She’d probably be arrested for child endangerment nowadays.

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                        #26
                        Very funny goldilocks.

                        I was thinking is it wise to shed the weight when I'm sure it was my extra padding that saved me from the worst of it. 🀣 I'm just very cuddly 🀭
                        when i can think of something profound i will update this.

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                          #27
                          Hi Sally Ann

                          I think of all kinds of things our mums used to do. Rubbing us in olive oil and telling us to sit in the sun. 😳

                          As long as we arrived home for meals no one seemed bothered where we'd been. Sending us to buy tobacco, bread and medicines from the pharmacy.

                          cant say I suffered from any of it infact probably grew up more sensible than those that aren't allowed out because who knows what is out there.

                          πŸ€—πŸ₯°
                          when i can think of something profound i will update this.

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                            #28
                            Kids wrapped in cotton wool grow up to be Sheep. 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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                              #29
                              We do seem to be unable to deal with emergencies these days.
                              we used to learn by our mistakes when kids but now they are not allowed to make mistakes or even loose in a race.
                              As a kid I burned myself' cut myself etc and dad would say you won't do that again will you πŸ˜€
                              It's all funny

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                                #30
                                We used to be black and blue. Knees and elbows covered in scabs. Used to be the thing to have the worst of everything and show off. Think it made us stronger. Certainly dont remember being scared of blood.
                                when i can think of something profound i will update this.

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