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    #31
    Bite the bullet and become pump fed. It solves a lot of issues sister πŸ‘πŸ€—β›½πŸ˜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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      #32
      Good morning Matthew,
      I really enjoy my breakfast so I will keep eating some food as long as I can but top up with supplements .I will go on to pump feeding when I need to.
      Have a good day
      Best wishes
      Mary

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        #33
        I admire your resilience. At the rate my left hand is deteriorating this will be my last Christmas so when exactly is the right time? Just saying. πŸ˜‰πŸ˜πŸŽ„πŸ€Άxx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #34
          Hi Matthew,
          We can’t help wondering how the end of life will be for us .No doubt many of us wonder if this Christmas will be our last.The important thing for me is not to spend too much time dwelling on that and enjoy today.
          I have a strong faith that so far comforts me .

          I have friends coming this morning then I will watch the Catholic mass on line .Family popping in late afternoon.New book to start.Simple things bring me pleasure these days.
          If there is time I will get out for a wheelchair push …I love Autumn so like looking at the falling leaves and peoples gardens .

          My hands are deteriorating too Matthew and everything feels so heavy.Writing is only legible by myself!
          Got myself dressed up for family lunch yesterday for grandsons birthday lunch ..glad I went.
          I don’t know about you Matthew but there are times every day when I really feel unwell,with odd sensations in my throat, hot sweats, heavy legs, electric shock type sensations in arms etc.
          I can distract myself by watching Tv, play rummikub with my hubby,listen to music or just sit in the garden for half an hour.

          Did you ever hear anything about getting rehoused?

          Best wishes

          Mary

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            #35
            I'm finding that at the end of the day my strength has all but disappeared. This has caused me to plan ahead and pop the pills I will need tonight this morning. Sounds so simple but it just shows I still cling to a fantasy. I'm supposed to be getting an adapted bungalow in my home town in the New Year. It remains to be seen if I am still here to move in. Have a blessed day sister. 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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              #36
              Originally posted by Mary C View Post
              I really enjoy my breakfast so I will keep eating some food as long as I can but top up with supplements
              Too right, Mary.

              I really enjoy my lunch, so I make sure it's a tasty one! I can't manage many textures, I am slow enough eating and can't hold my head up for too long to eat, so the bulk of my calories is via a pump, which is proof that a mix and match approach works (for me)

              You'll find your way at every stage. 😘
              ​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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                #37
                That's exactly what I meant. If you've lucky enough to eat then do. The pump just ensures you get enough of the right stuff while you enjoy chocolate and donuts. πŸ©πŸ«πŸŽ‚πŸŒžxx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #38
                  Hi Mary,

                  I posted this video a while back, probably before you joined, but the Dietitian in it says what you said above, as in just because you need to eat calories, they shouldn't be high-fat empty calories, but calories from a good source.

                  He doesn't have any magical answers unfortunately. If you want to listen, it's less than 4mins long. 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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                    #39
                    matthew55
                    Forum Member
                    matthew55 good luck for your adapted bungalow in the new year 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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                      #40
                      matthew55
                      Forum Member
                      matthew55 thats amazing news re a bungalow. Hope it comes to fruition x
                      Diagnosed May 2021 bulbar onset als.

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