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    Help with eating

    Good morning All
    I hope everyone is OK, well as ok that can be expected.
    my wife is really suffering with eating, a real loss of appetite, losing weight rapidly. I've tried, little and often, helping feed her, soft food, but she's lost interest in eating. Ive told her if she doesn't eat how is she going to fight this F#$#k disease ( sorry for the bad language). .....I've downloaded the food guide. Done everything I can think of and tried all the advice. But you guys are at the coal face so to say ......any advice please

    #2
    I have given up eating for a while but I have had a PEG since day zero
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    Comment


      #3
      markce

      Sorry to hear about your wife's lack of appetite. Unfortunately it is quite common with MND. I have to force myself to eat at set times.

      Have you access to a dietician? Mine gave me really good advice and prescribed supplement drinks. Double cream on everything, porridge, in soup, on puddings. Fortified milk which is four tablespoons marvel milk powder made up to a pint with full fat milk.

      I tend to make up the deficit with puddings. Creme caramel, chocolate mousse or sponges with custard.
      I have also changed how I eat and eat a main meal at lunchtime and soup or similar in the evening.

      If you can find something she likes to eat it doesn't matter if it is repetitive.

      โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹Has your wife been asked if she would consider a peg?

      โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹Hope this helps.

      Diagnosed 3rd November 2021 Bulbar Onset

      Comment


        #4
        markce Sorry to hear that your wife has little appetite Mark. It must be terribly difficult for you to see your wife losing weight like she is...

        Have you talked to her about it?

        Sometimes people are put off eating because they can't chew the food or move it around the mouth easily; swallowing might be difficult because of excess saliva and/or muscle weakness causing coughing or regurgitation; eating might just be too tiring; there is a degree of apathy towards eating, often due to low mood/depression.

        I don't know if your wife has seen her nurse, Neurologist or Dietitian lately, if not and, if and only if she wants to, perhaps it's a good idea to.

        There are nutritional drinks which can be prescribed.

        A feeding tube would be a route to providing safe calories and fluids but that decision is one for your wife to make. 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€‹

        Comment


          #5
          Iโ€™ve lost about 4 stone since MND took hold. I was overweight and now apparently Iโ€™m about normal! I have lost interest in food and have a very small appetite. Iโ€™m now about 80% fed through my PEG (which Iโ€™d thoroughly recommend) but the dieticianโ€™s idea of a โ€˜mealโ€™ (2 bottles of Ensure Compact) makes me feel extremely full.

          Iโ€™m going to be controversial now because the more Iโ€™m nagged about taking extra calories on board, the more stubborn I feel because I donโ€™t like feeling totally stuffed and uncomfortable. Iโ€™m a grown up. Nobody has told what I must eat since I was about 10 and Iโ€™m not happy being told what I โ€˜mustโ€™ do now!
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

          Comment


            #6
            Originally posted by PeterPan View Post
            Iโ€™m going to be controversial now because the more Iโ€™m nagged about taking extra calories on board, the more stubborn I feel because I donโ€™t like feeling totally stuffed and uncomfortable. Iโ€™m a grown up.
            I don't think that's at all controversial Peter; I think lecturing/nagging is guaranteed to make many people do the exact opposite ๐Ÿ˜

            Because we may have lost independence over mobilty and the ability to perform basic tasks, when we do have control over something, we don't yield easily. 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€‹

            Comment


              #7
              Hi all
              thank you for all your feed back. Peter 100% i think that's how my wife feels, ...yes she has seen all the nurses and dietitians, and tried all the supplements ( she hated them all ) I'm not saying she's a fussy eater ....but ....well she is ๐Ÿคฃ ....thank you all just for replying.....its made me smile....she loves the Aldi ready meals ....but I feel its reputation.....but like you said Gill it doesn't matter as long as she its most of it ....we talked about a feed tube....and that was a big no ....she just doesn't want it. ...so I won't nag as much ...but keep loving her as I have for the last 30years.
              thank you everyone

              Best regards

              Comment


                #8
                Bless you Mark, I wish you all the very best โค๏ธ

                James
                Foxes Never Quit ๐Ÿ’™

                Comment


                  #9
                  HI markce . Im so sorry to hear about your wife's eating difficulties. It must be very hard for you to see but you should feel proud of your love and patience.

                  My swallow is OK and I dont have a feeding tube but I rarely feel hungry. When my husband ( who is always hungry, bless him !!) asks me what I want for a meal it really puts me off. However, we have found if he just makes it and gives me a small portion I eat it. Its a bit like when your children were toddlers and loved asking for more.

                  This is what works for me but im no expert and we're all different. I have fresh fruit or a smoothie in the morning and a late brunch, which I enjoy. I have a light tea and then a snack before bed. I try to make sure I have enough protein but I guess calories are more important.

                  โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹Good Luck.. it must be so tricky for you xx๐Ÿ˜˜๐Ÿค—

                  Comment


                    #10
                    markce - I initially lost quite a bit of weight, but have re-gained a fair bit. I was told to eat whatever I wanted when I wanted.

                    At first I had no appetite and the effort felt too much. But I discovered a love of ice-cream... you can never have too much apparently. So I ate more ice-cream and now generally my appetite has improved and I am eating more food. I was told to treat eating food like taking medicine and I know if I start losing weight again I will have to go and get my PEG fitted. So, a summer full if ice-cream is my current plan.

                    I hope you find something to tempt your wife xx
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment


                      #11
                      Thank you all for your help .

                      Comment


                        #12
                        Tiny lady: Ice cream ๐Ÿจ YES!!! ๐Ÿ™Œ Iโ€™m with you!

                        Comment


                          #13
                          Every professional involved in my care discusses having a PEG on almost every visit. Even today the SALT nurse said "I'll just discuss again..blah blah." Which is fine. ...it's done in a respectful way and for now I say... "No....not wanting that option at this time". I add that I'm fully aware of how that could play out however my decisions and choices are mine to make.

                          I fully 'get' how much easier it is to ensure good hydration and nutrition via a peg. I've worked in social care all of my career so none of these processes are new to me ....but new to ME.

                          I've witnessed good and bad interventions in medical settings that quite frankly are done for staff rather than the person....but that's another story...& I digress๐Ÿ™„


                          My point is listen to the advice of professionals... weigh it all up....do what suits you๐Ÿ™๐Ÿ˜‡๐Ÿ˜˜๐Ÿ‘Š๐ŸผโœŠ๐Ÿผ



                          Easy to eat ready meals:

                          Charlie Bingham Fish Pie
                          Tesco finest Lasagne
                          Tesco finest mousaka
                          Cottage Pie
                          (Charlie B)Macaroni Cheese

                          I add grated cheese to the top of most meals and extra gravy if appropriate. Use ready made carrot & Swede mash....or creamy mash. Adding extra butter.๐Ÿ‘๐Ÿป๐Ÿ‘ฉโ€๐Ÿณ


                          Last edited by LindaB; 23 March 2022, 14:34.
                          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€‹

                          Comment


                            #14
                            Thank you Linda ๐Ÿ˜Š
                            100% the decision are my wife's just because every other part of her body has going tits up .....her mind is still as sharp and funny as ever. Just wish she was better at charades ๐Ÿ˜„
                            I will try the ready meals you recommended and see what she likes ๐Ÿ‘ and see what she likes .

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