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Reason to be cheerful ๐Ÿ’“๐Ÿ’

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    Reason to be cheerful ๐Ÿ’“๐Ÿ’

    Had such a lovely day today..a day off work too. A friend surprised me with an offer of a drive out....so roof down....wind in my hair...driving much faster than I ever would ...was a joy...even the car fumes ...anyway we ended up in Brighton....nothing major ...just friends sitting on a bench drinking a coffee....people watching and talking as we do.
    The joy for me was just that feeling of normality & being with a friend who gets my voice is weak....understands I can't walk too far....never made me feel it was a big deal.
    I'd like to bottle that day & share it with you all....sun on your face....wind in your hair....smell of the sea.๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰
    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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

    #2
    Sounds wonderful. Take a picture in your head and keep it there. ๐Ÿ˜Š
    when i can think of something profound i will update this.

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      #3
      What a fab-u-lous day Linda, with an equally fabulous friend, by all accounts - thanks for sharing xx
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

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        #4
        Sounds like a gorgeous day Linda and it's great its given you a boost. Just lovely xx ๐Ÿ˜Ž ๐ŸŽ ๐ŸŒž

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          #5
          Hi Linda,
          So good to hear you had a good day with your friend.I love to be outside too.This afternoon was bliss sitting in our garden watching 3 of our grandchildren playing after school.It was lovely and sunny as we sat chatting with our son.As I have said many times itโ€™s good to enjoy each day as best as we can and appreciate the blessings of being with family, friends and appreciating nature.Going to bed content ..letโ€™s hope we all sleep well.
          Best wishes
          Mary

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            #6
            Iโ€™m pleased you enjoyed the experience Linda. We have been isolating for too long and we need to enjoy the things that put a smile on our face. Donโ€™t wait too long before organising the next one.
            Iโ€™m going to do this even if it kills me!

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              #7
              Went to a pub in Sheperton by the river sat outside and had a lovely lunch. Watching all the boats sail by. Grandson and his partner and two other friends. Gorgeous way to spend a few hours in the sunshine feeling blessed๐ŸŒž๐ŸŒž



              normality is priceless๐Ÿ’‹
              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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

              Comment


                #8
                Ah lunch I remember it well ๐Ÿ˜‰๐Ÿค—๐Ÿค”๐Ÿ˜Žxx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                  #9
                  Sounds idyllic LindaB - may you have many more such days. xx
                  โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  โ€‹

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                    #10
                    Sounds perfect Linda . Thanks for sharing . It's so lovely to appreciate the good days x

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                      #11
                      I'm storing up good days to offset the not so good days. All of your advice on here helps...in all honesty.
                      Such as plan one event only to use any energy wisely...fatigue is unreal....rest when possible...let people help.

                      Anyway yes was lovely ....river setting was perfectโค
                      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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                      Comment


                        #12
                        Sounds great Linda.

                        We went to Settle today for my husband Steveโ€™s band practice in the Friends Meeting House. Itโ€™s their regular Friday afternoon practice session. I go partly to listen and chat, but also as Steve doesnโ€™t like leaving me home alone. Last week they all came to our holiday cabin to practice. The farmers/owners gave permission. It was lovely. It was very hot/muggy today but canโ€™t complain, anything but rain! 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.

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                          #13
                          How lovely to have music too Lynne....a bonus. Very hot here but not muggy...sunny days store that memory for winter ๐ŸŒž ๐Ÿ˜˜
                          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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                          Comment


                            #14
                            My boys are back in action, albeit pre season. New management new life. COYS!!!! โค๏ธโญ๏ธโ˜‘๏ธโฌ†๏ธ๐Ÿด๓ ง๓ ข๓ ฅ๓ ฎ๓ ง๓ ฟxx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                              #15
                              The mighty Nuno https://youtu.be/Dd_jSWuqm2k COYS!!!! ๐Ÿ‘๐Ÿค—๐Ÿ˜„๐Ÿ˜†xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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