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    #16
    Hi Mary

    Yes it was just a short dose to kick start and increase his appetite.

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      #17
      Originally posted by Jo jo View Post
      Yes it was just a short dose to kick start and increase his appetite.
      Did the benefit last
      Jo jo
      Forum Member
      Jo jo is his appetite is still healthy? 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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        #18
        Yes so far so good. He gets very tired eating so isn’t eating as much but his appetite went and really wasn’t hungry at all. We were all set up to start feeding through the rig then it was decided to give a short dose on steroids just to see if they could kick start his appetite and after a few days he started to feel hungry again. That was about two months ago now and his appetite is still there. Maybe coincidence but worth a try as it’s saved him using his rig for now.

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          #19
          Hi Mary, sorry to hear you’re having this difficulty. I went from being a bit hungry all the time, to really going off food, but find this varies. Sharing meals with friends was one of my favourite things, but now meals are such a challenge, choking on people’s beautiful cooking, especially if I try to talk, taking ages to eat, etc. Having to adapt to new norm, as someone said, and enjoy what you still can enjoy.
          love, Heather x
          Diagnosed July 2020, ALS bulbar onset.

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            #20
            Originally posted by Jo jo View Post
            Yes so far so good. He gets very tired eating so isn’t eating as much but his appetite went and really wasn’t hungry at all. Maybe coincidence but worth a try as it’s saved him using his rig for now.
            That's great Jo Jo.

            I know using a feeding tube can be a huge (and unwanted) step but maybe think about having a few bottles of Ensure or Fortisip in a cupboard to use on a bad or tired day? Using the odd bottle here and there to top up his calories could give him an energy boost, particularly as eating tires him.

            The tube doesn't have to be a 'last resort' in the whole nutrition management aspect of his day or week, rather it can be used on an ad hoc basis *in addition* to his oral intake of food.

            Something for you both to mull over perhaps. 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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              #21
              I've got Ensure plus & Fortisip as prescribed...for days when my appetite is not so good due to fatigue or just not hungry. Currently I'm drinking one a day anyway just to try to stabilise weight loss.
              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.​​​​​​

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                #22
                Originally posted by Ellie View Post
                That's great Jo Jo.

                I know using a feeding tube can be a huge (and unwanted) step but maybe think about having a few bottles of Ensure or Fortisip in a cupboard to use on a bad or tired day? Using the odd bottle here and there to top up his calories could give him an energy boost, particularly as eating tires him.

                The tube doesn't have to be a 'last resort' in the whole nutrition management aspect of his day or week, rather it can be used on an ad hoc basis *in addition* to his oral intake of food.

                Something for you both to mull over perhaps. xx
                Hi Ellie
                we have been given some high fibre and calorie bottles but they gave him the runs and bad stomach ache. Then he was given protein sachets to have by mouth or through the tube, this gave him bad constipation so he’s very reluctant to have anything through it. He’s paralysed from the neck down now and needs his NIV all night and in the day only coming off it for short periods. I’ve just returned to work last week on a two day week until I have to return full time. We have a lovely carer who we both feel confident with but I hate leaving him. I will regret going back and not spending the time with him if hes not got long but as there is no time line I carnt not work and live on SSP for long.

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                  #23
                  Jo jo
                  Forum Member
                  Jo jo
                  Sad to hear your husband is paralysed from the neck down and using NIV almost 24 hours a day.It’s horrible that constipation or tummy upsets can occur as the result of taking supplements.I have the same problem as no two days seem to be the same despite taking the same supplements!

                  I struggle to get enough nutrients per day..I eat a good breakfast and lately aim to have 4 supplements if I can’t take small meals.( As advised by nutritionist recently and monitored monthly).I take supplements out with me as otherwise I can’t achieve the amount I need.

                  I hope returning to work in a phased way will work for you both and great your hubby has a good carer.

                  Best wishes
                  Mary

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                    #24
                    Jo jo
                    Forum Member
                    Jo jo He's not having much luck, is he 😟

                    There are various different nutrition drinks and puddings which can be given through the tube, diluted if necessary, or even very well blitzed 'normal' food, with added water, to make a tube-friendly consistency.

                    Jo Jo, I am not suggesting he use his feeding tube if he is against using it but, if he feels his energy levels would benefit from more calories, then there are products/foods and ways to give him that - sometimes it takes a bit of creativity to chance upon a solution.

                    I feel for you regarding your work dilemma, I really do - the bills don't pay themselves... 🤗 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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                      #25
                      I have found having one one litre feed and three pro plus a day puts about 2 pound on. Yesterday I only managed about three quarters of the one litre and my weight this morning had dropped from 11.11 to. 11.09. Not that I'm obsessed with my weight. 😉😁😍🍻xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #26
                        Originally posted by matthew55 View Post
                        Not that I'm obsessed with my weight.
                        Man, that's yet another advantage of not being able to stand, redundant home weighing scales 👍😍😍😘

                        ​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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                          #27
                          The loss of appetite is irritating at the least. Eat Cake. Cookies too. Higher weight, a high BMI, is good for us. Get fat. Love life. Enjoy the sweet treats and love the pasta. Your weight is a prediction of survival. Keep the weight on. If your appetite is falling off, ignore it. Just pick up a fresh Cinnamon bun and chow down. The love of that flavor will change your mind :-). Even if you have to lick it to death. The sugar coating is pure love... Shock your cardiologist! Scare the ALS clinic with attitude! I shall not go down with out a fight! Give me a direct line to the bakery so I can get instant delivery please.

                          Just sayin'...

                          (and don't forget the ice cream)

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                            #28
                            Johnny5
                            Forum Member
                            Johnny5
                            Hi, there is no way I could eat the treats you suggested as I have no appetite .I can’t ignore my poor appetite and just eat cakes.I am conscious I need to maintain my weight hence I-contacted the nutritionist to help me plan a combination of food supplements and the small amount of food I can face eating,
                            My appetite well and truly declined a year after diagnosis ..before that I did feel hungry and able to enjoy reduced size portions of food.
                            I didn’t give up eating a healthy diet by choice but rather because I never feel hungry as MND progressed.I now need soft and bite sized food according to dietician.
                            We still have friends over for meals and I am used to trying a small amount if I can face it or just enjoying the social side of having friends visiting.
                            I know many people with MND are also affected by diminished appetite .So glad I have the PEG in place to enable me to try and reduce more weight loss.
                            Enjoy the day.
                            Best wishes
                            Mary.

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                              #29
                              I have always loved my food. I still eat 3 meals a day but when hubby asks what I want I have no idea, my desire has gone. I was a big Sweet eater but I can take or leave it now. My palette is definitely deteriorating sadly but makes it difficult for hubby to know what to feed me x

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                                #30
                                Madge
                                Forum Member
                                Madge ..it’s very difficult for carers , spouses to witness our lack of appetite.For months now my husband has tried to encourage me to eat more food but he gets it that I have no appetite.The compromise was to see the nutritionist regularly and for me to eat food when I can and then top up with supplements as prescribed and regularly reviewed.

                                Today was a family lunch for one of our young grand children.So everyone tucked into pizza etc and I just had an orange juice.Nobody commented as they know the situation but I still had a lovely time filled with laughter.

                                I am determined not to be miserable about my poor food intake ( even though at times I really wish I fancied something to eat)My daughter explained to her children that as I am not well I have special food through a special tube in my tummy.That seemed to satisfy their curiosity enough.

                                My hubby and I have lovely memories of eating out with friends at a variety of restuarants.I try and sit with my hubby when he has his meals unless I am having a lie down.

                                Best wishes
                                Mary x






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