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Eating for maybe the last time

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    Eating for maybe the last time

    I just had poached eggs on toast and then did my teeth with Oralieve toothpaste to help with my very dry mouth. PEG this week and probably a NIV 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.

    #2
    Lynne K you've got a lot on this week and I hope it all goes well. You'll still be able to enjoy your treats as I know other forum members do even with a peg. ๐Ÿ‘๐Ÿป๐Ÿ™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€‹

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      #3
      Lynne K I thought you were still managing to eat safely ๐Ÿค” - toast can be tricky but you seem to eat it okay - are you thinking of not eating anything orally once you have a feeding tube? 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
        Originally posted by Ellie View Post
        Lynne K I thought you were still managing to eat safely ๐Ÿค” - toast can be tricky but you seem to eat it okay - are you thinking of not eating anything orally once you have a feeding tube? xx
        Hi Ellie, Iโ€™m going to try and have little treats when I have the PEG. Poached eggs on toast is a favourite but as you say toast is tricky so might just have the eggs and my vegan yogurt. Well as long as my hands work 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.

        Comment


          #5
          Originally posted by LindaB View Post
          Lynne K you've got a lot on this week and I hope it all goes well. You'll still be able to enjoy your treats as I know other forum members do even with a peg. ๐Ÿ‘๐Ÿป๐Ÿ™๐Ÿ˜˜
          Thanks Linda, very true 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.

          Comment


            #6
            I have a peg but I don't really use it. If you can manage toast then why not carry on eating? Maybe small moist bite sized. Thats what I go for x
            Diagnosed May 2021 bulbar onset als.

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              #7
              shelly21 I have a very dry mouth so toast is now a no no. If I wasnโ€™t intolerant to dairy it could be loaded with butter and go down easier. I wish. Iโ€™m waiting on a call from Wythenshaw about going in tomorrow to have my breathing checked 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.

              Comment


                #8
                Steve told me before he went to the shops a few minutes ago that heโ€™s doing me poached eggs on toast. Fingers crossed that I can cut it up and eat it 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.

                Comment


                  #9
                  Also Steveโ€™s looking if Morrisons have any vegan pasties because Iโ€™ve been able to eat those cold recently as pastry and filling is quite soft. Fingers crossed that Iโ€™ll manage 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.

                  Comment


                    #10
                    I had the cold vegan pastie (as can pick it up and not have to use cutlery) with mayonnaise to help with the dry bits of pastry, then put had a vegan yogurt so a normal late lunch for me. Now to go do my teeth with Oralieve toothpaste for dry mouths and get Steve to spray the Glandosane synthetic saliva (sent by my SLT via my GP) in my mouth 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.

                    Comment


                      #11
                      Lynne K There are plenty of vegan 'butters' out there for your toast which would help with its eating but, of course, the choice to continue eating meals, or not, is your choice to make.

                      Whatever you decide, make sure you're getting enough calories - don't want you fading away on us ๐Ÿ˜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
                        Hi Lynne K . You have such alot on this week, I really hope all goes well for you,

                        As an aside, I tried a diary free diet in the hope it would sort out my tummy problems and found lovely butters and soft vegan cheeses. Also coconut yogurts and vegan chocolate spread.

                        Hugs to you,
                        Love Debbie x

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                          #13
                          Originally posted by Deb View Post
                          Hi Lynne K . You have such alot on this week, I really hope all goes well for you,

                          As an aside, I tried a diary free diet in the hope it would sort out my tummy problems and found lovely butters and soft vegan cheeses. Also coconut yogurts and vegan chocolate spread.

                          Hugs to you,
                          Love Debbie x
                          Good idea Deb and thanks 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.

                          Comment


                            #14
                            Originally posted by Ellie View Post
                            Lynne K There are plenty of vegan 'butters' out there for your toast which would help with its eating but, of course, the choice to continue eating meals, or not, is your choice to make.

                            Whatever you decide, make sure you're getting enough calories - don't want you fading away on us ๐Ÿ˜๐Ÿ˜˜
                            Thanks Ellie, Steve is just packing me a bag and doing a medication list for my admission tomorrow 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.

                            Comment


                              #15
                              Lynne K all the best for tomorrow x
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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