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    No appetite

    Hi,
    Anybody else at the stage where your appetite has all but gone.Never feeling hungry is now my norm.I do take supplements via the RIG and eat a good breakfast daily.The nutritionist came last week and sorted out increasing supplement regime to maintain my weight.( I have lost a lot of weight before and since diagnosis in June 2020.

    I can swallow ok and assessed as needing soft bite size diet.
    Just feeling a bit sad that I can’t enjoy food whilst I can still eat.I don’t usually do self pity but feel like a little moan .

    There ..I have said how it is so will just get on with it .

    Best wishes
    Mary


    #2
    Mary I think a moan is something everyone on here is completely entitled to!! And does you good to voice how you feel.
    just a thought... if the nutritionist has increased the supplements amounts via the rig can that increase alone cause some of the lack of appetite? I dont know, if you are getting a lot of dietary requirements elsewhere from actually eating food can that prevent the body from feeling hungry? And lack of activity is always going to dent the appetite. Sorry can't offer much help but am thinking of u. I hope u can manage little and often and continue to enjoy small amounts of your favorite food.
    Best wishes from Zante.

    Comment


      #3
      Mary C hi, I’m at that stage too. My appetite is really poor, and I can’t even manage to drink a pint of beer these days. That’s crazy, and probably explains why I’ve lost 20 kilos (3 stone) since problems started early last year. Mind you, I was pretty overweight. I’m now ‘healthy’! It’s disappointing that food just doesn’t taste appealing any more, and choking, coughing and cheek biting make it even less pleasurable.

      You really don’t need to worry about self pity. As Zante said you’re entitled to moan occasionally!
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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        #4
        Originally posted by Mary C View Post
        The nutritionist came last week and sorted out increasing supplement regime to maintain my weight.( I have lost a lot of weight before and since diagnosis in June 2020.
        Are you managing to take in the amount of calories the nutritionist set as your target Mary?

        Never feel bad for having a moan 🤗🤗 xx

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Thank you Zante,I lost my appetite just before the RIG was fitted in June.
          I will just as you say try and enjoy small amounts of food when I can.Still manage to enjoy one glass of wine some evenings whilst watching TV.
          My sister in law Linda is an amazing cook and she helps us with with cleaning , cooking , gardening etc.She keeps trying to tempt me with her great meals but Just don’t feel hungry.
          Nutritionist worked out I need 5 small meals or combination of small meals and supplements.
          Moan over ..tomorrow is a brand new day.
          Mary

          Comment


            #6
            Hi Ellie , yes I am having more supplements than meals .So think I am getting enough calories most days..Nutritionist is coming back in 4 weeks and available on phone too.
            Goodnight Ellie x

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              #7
              Good luck Mary for keeping your weight stable and for enjoying little tastes of very tasty food that temps you.

              i emailed my neurologist to ask for her to arrange me a feeding tube of one form or other to be done when I go in for my suprapubic catheter. This is because my hands are getting weaker 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
                Would the supplements reduce your appetite as Zante suggested? It's tough to not be able to really enjoy food. I'm sure you'll talk it through with your nutritionist.

                My appetite is no where near my 'normal' & my taste has changed...less of a sweet tooth.
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                  #9
                  Hi Mary
                  my partner lost his appetite and the palliative nurse prescribed two weeks of steroids. That did the trick and he got his appetite back. He’s on supplements through his rig but now enjoys his small amounts when not to tired to eat.

                  Comment


                    #10
                    Jo jo Jo
                    Thanks for reply..Were the steroids prescribed to boost appetite only?I will talk to my palliative care nurse about that.
                    Best wishes
                    Mary

                    Comment


                      #11
                      Lynne K
                      Glad you decided to get the PEG in place as at least it’s there if you need it.I had mine fitted in June and so glad as had began to lose appetite before then.
                      Best wishes
                      Mary

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                        #12
                        I'm back at 11.11 stone. All due to my pump. 😁😊🤗😍xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Hi Mary C I suddenly got to that stage in the last week. It was like a switch had been turned off. Extraordinary. I had a huge appetite up until last week, now I feel sick at the thought of having to eat. I'm not having many swallowing problems either. The awkward thing is I have just started on the OptiCALS study (Sheffield Uni) and my target is 2,364 cals a day . Ugh!

                          Comment


                            #14
                            Thanks Mary 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
                              Originally posted by Rosemary6NT View Post
                              The awkward thing is I have just started on the OptiCALS study (Sheffield Uni) and my target is 2,364 cals a day
                              Try the 'Little and Often' approach to eating, Rosemary. Hopefully you'll have had some tips on what high cal foods you can eat to reach that (substantial) target!

                              Good luck 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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