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    It's a race

    No matter how much Ensure, alcohol, sugar or full fat milk I put in my weight keeps dropping. I'm now 10.5 stone and if it wasn't for my inability to kiss or smile I think I might even be appealing. As it is it's a race between weight and MND for who gets to kill me first. Life is truly a female dog. ๐Ÿ˜‰๐Ÿ˜x

    #2
    Hi Matthew

    Are you using the Peg? I was in the same position 18 months ago and went down to 7 stone without realising it
    I went onto over night feeds and it was amazing how quickly the weight went on
    such a relief

    I hope you find a solution
    Sarah xx

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      #3
      Yes I'm pegging, I have doubled my input this week so I'll check in a couple of days. I even add butterscotch syrup to every Ensure. ๐Ÿ˜x

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        #4
        How many calories are you getting on an average day - any idea?
        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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          #5
          Not a clue sorry. I'm 100% Peg now and today I pegged a nurishment for the first time. Flavoured sponges are in my future. ๐Ÿ˜‰๐Ÿ˜x

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            #6
            Hi Matthew

            do you have a dietitian helping you? It would help to know how many calories you need daily. Have you considered doing overnight feeding? It makes life a lot easier xx

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              #7
              You kinda need to know what calories you are consuming everyday and to know what you should be aiming for.

              I don't know what you take, but those Ensure Compact, for example, contain 300cals so, if that's all you were taking, you would need to have 8 bottles to get 2400cals, which is an average daily calorie requirement for an average man. (I know you are far from being an average man ๐Ÿ˜‚๐Ÿ˜‚) This figure can vary. Ideally a Dietitian should have had a chat with you around the time of your PEG procedure so you not flying blind ๐Ÿค”
              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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                #8
                My dietitian is an immature waste of space. I'm halfway to eight bottles but I'm not over fussed. I know you want me around but I'm seriously not bothered. I don't want it to rule what life I have left I guess. ๐Ÿ˜x

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                  #9
                  4 bottles a day - well, at least you know why you're losing weight!!
                  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
                    Well I have decided that from tomorrow I will have eight so remind me in a week and we shall see what we see. ๐Ÿ˜x

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                      #11
                      Doubling your Ensure intake overnight may make you feel ๐Ÿคข not to mention how it may affect your bowels...

                      Go easy on yourself ๐Ÿ˜˜
                      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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                        #12
                        Matthew my dietitian has put me on extra protein which I have at lunchtime xx it is only a glass full but very good for preventing skin ulcers and gives me extra energy x
                        Worth a try x

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                          #13
                          Ooh, that's interesting Sarah - what's the product?

                          Thanks,
                          Love Ellie.
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

                          Comment


                            #14
                            I'm touched by the concerns truly but don't worry about me. I'll keep you updated on my progress I promise ๐Ÿ˜๐Ÿ‘x

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                              #15
                              Ellie it's called ProSource a protein liquid supplement for tube feeding only. Made by Nutrinovo. I have two sachet daily xx

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