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    #256
    Enjoy it LindaB

    Everytime I hear the Strictly music now, you pop into my mind πŸ‘πŸ‘ I tend not to hear it for long though as somebody always changes the channel... 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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      #257
      Ellie no fans in your house then πŸ˜‚πŸ˜‚πŸ˜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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        #258
        Originally posted by LindaB View Post
        Ellie no fans in your house then πŸ˜‚πŸ˜‚πŸ˜πŸ€—
        My daugther won't entertain it, hubby uses it to snore to, as far as I can tell 🀐 but I did once hear him scold her when she turned off the results show 🀩🀩 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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          #259
          Reason to be cheerful.
          Started the day with a visit from my deacon bringing Holy Communion to me.

          We had our two grandchildren aged 6 and 9 with us today and they are fast asleep here now.We went to the park and they pushed me in my wheelchair, kicked the autumn fallen leaves and laughed as they played on the swings.Stopped off At craft shop to get a beginners sewing kit and Xmas stickers.Back home for tea and board games..topped off with Strictly .
          Our 20year old granddaughter also called in for a few hours and to share all her news.

          I kept going as had a pre lunch nap and now sat in bed with a glass of Sauvignon .
          Feeling blessed and reflecting on the lovely day being with the people I love .

          Best wishes
          Mary

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            #260
            πŸ˜‚πŸ˜‚ I was chuckling at the thought of your hubby snoring through Strictly
            Last edited by LindaB; 20 November 2021, 21:47.
            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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              #261
              Mary C You're one lucky grandmother Mary, those grandchildren must love you lots 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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                #262
                Ellie
                Its cute how caring they are towards me.The 9 year old girl says things like would you like me to get you a drink of water.She says to her 6 year old brother β€œgive grandma time to speak please”as she knows my voice is quieter and weaker.

                They love a ride with me in the through floor lift pressing the buttons .The little boy is taken with the bio bidet loo as thinks it’s good to have a bottom wash and dry!
                At tea time the 6 year old asked if I was having my special feed through my tummy tube and was satisfied that I would be .

                The Other grandchildren ( my sons 5 children) are regular visitors and the 10 year old twins are doing homework on Stephen Hawking.The boy said he told his teacher I have MND so he proudly thinks he knows a few facts to include in his homework.
                They have all had a look at the App for text to speech with various comments from them about how I sound and wanting a go themselves.
                They do bring us a lot of happiness and I really hope that when I lose my speech I will still enjoy their company , humour etc.

                Goodnight
                Mary x


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                  #263
                  Mary C Children are just great at accepting things and just getting on with things, aren't they!

                  I remember my daughter, aged 5, bringing in my food pump, bottle of feed and giving set and, proud as punch, showing her classmates how the pump works during Circle Time 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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                    #264
                    Mary C sounds like you had a wonderful day. Grandchildren are just the best aren't they...give such joy.
                    Ellie you're right children are much more able to accept 'difference'.

                    πŸ’–πŸ’–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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                      #265
                      Mary C what lovely grandchildren you have. Thanks for sharing 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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                        #266
                        Todays reason to be cheerful.

                        Well the grandchildren went home after staying overnight.My husband and I went to see Xmas lights being switched on in small town nearby.Christmas carols accompanied by brass band and finally mince pies and mulled wine.( I managed the wine).
                        Well supported event organised by The local Rotary club.A lovely atmosphere.
                        Another day of blessings .
                        Best wishes
                        Mary
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                          #267
                          Mary C sounds like you're getting into the Christmas spirit πŸ€ΆπŸŽ…lovely to feel your positive energy. Mine was flagging today but gave myself a talking to and reminded myself of all I have to be grateful for. Balance restoredπŸ™
                          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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                            #268
                            LindaB
                            Its hard to keep positive some days though.As I feel fasciculations on my tongue and cramps in fingers it’s easy to say to myself..what’s coming next.

                            I too have to self talk and remind myself of the blessings I have .I have days where I think I am fed up of not feeling well.I have to push myself to distract myself and occupy myself with other things.

                            Dont think anybody living with MND doesn’t have down times.We just keep trying to support each other.
                            I also get more emotional..today at the Xmas Carols I felt tearful.Then I bumped into an ex work friend from 30 years ago and she was clearly sad to see me in the wheelchair trying to croak out what I wanted to say.She said lovely things about the days we worked together and then off I went again with a few tears!
                            Oh well, all in all a lovely day x
                            Maryx
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                              #269
                              Mary C 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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                                #270
                                Hot Water BottleπŸ’–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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