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    How much food?

    Happy Friday everyone

    I am on pump food overnight and am gaining too much weight. How much do you all have?
    Do you mind telling me your height as well.
    I also have a sachet of extra protein at lunchtime.

    Thanks everyone xx have a good weekend x Sarah xx

    #2
    I have a target calorie intake of 1800 and that's more or less what I get. I have always been thin, and I still am, so I may not be an ideal comparison!

    Weight 50-51kg. Height 169cm.

    I'll politely put it out there - could it be age-related? I recently turned 52yo and think my belly is getting jiggly ๐Ÿฅด๐Ÿ˜ณ (which is why I added on that extra kg to my weight!)

    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€‹

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      #3
      Since taking daily 1000ml TwoCal I have gone from 10st to 11st in two weeks. I am 55 and 6'1" with the body shape of an American Football player wearing armour. My heaviest was 17st. Oh and I finally have a six pack albeit a very wrinkly one ๐Ÿ˜x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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        #4
        Hi Sarah, I've just gone over to exclusive tube feeding. I'm starting with 1800 calories to see how I get on. I'm 6' 2" (188cm) and have hovered around 70kg since my twenties. In the last month I've slowly dropped to 66kg. I'm hoping I can put a bit of weight on.
        Each day is made easier with a bit of humour.

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          #5
          hi everyone. i have a bit of a conundrum. stephen is having 500 calories at the moment and it will be gradually increased. the thing is he's starting to lose his appetite. on the one hand i am pleased about the peg food in that i know hes getting nutrition and calories. on the other hand i want him to eat with his mouth while he still can. i don't know if i am wrong or what but i feel while he can still eat and swallow his degestive system and in himself will be more (happy) i cant think of what i am trying to put but i cant imagine not being able to eat food and he always loved his food. as the calories are increased i am worried his appetite might go altogether. hes about 70kg and 6'2" i dont want to stop the peg food but im worried that the increase in peg food will be a decrease in him wanting to eat. i dont know if i am worrying unnecessarily. frequently ive worried that when i ask him if he wants to eat he just wants a bit of toast. i cant make out if its just so i dont faff about cooking, he doesnt like my cooking, he really isnt that hungry or he just wants the damn toast!
          any help would be appreciated.

          Comment


            #6
            Denise, it makes no physical difference how he gets his calories so, if he isn't much interested in eating, increase the amount of calories he gets pumped into him.

            He may be tired of the whole damn MND nonsense, have no energy or may be constipated, so has a decreased appetite. If he continues to restrict calorie intake, it becomes a vicious cycle of being too tired too eat and not getting the calories to produce that energy to want to function.

            What about increasing his pump feed and giving him a tasty, easy-to-eat small meal - e.g. cheese & diced ham/bacon omelette, mushroom pasta in cream sauce etc. Something which smells delicious when cooking it! If Stephen has an issue swallowing, I get my uncooked spaghetti broken into small pieces, I find this easy to eat, even easier than orzo pasta.

            I know it's hard for you, Denise - the walls in your house must have chunks out of them from where you bang your against them ๐Ÿ˜

            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


              #7
              thanks ellie.

              yeah im doing a lot of bacon and things that smell like you want to eat them. the dietician keeps suggesting soup. i think he find soups boring even though i add curry powder or something just so it smells good. he can eat and swallow but getts a bit pissy with his knife and fork. i shall say to him well either you eat it or you get to stay plugged in for longer.

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                #8
                Originally posted by denise View Post
                ... he can eat and swallow but getts a bit pissy with his knife and fork
                I remember being at that stage - I used to eat everything with a spoon!

                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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                  #9
                  I've lost my ability to swallow over the last few weeks. I've been struggling to eat for about six months, but that was more due to tongue than swallow. I can't even drink thickened tea and coffee now without setting off some kind of swallowing cycle. My throat just seems to go onto automatic for about five or six swallows. I'd put more nutrition through his PEG if I was you.
                  Each day is made easier with a bit of humour.

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                    #10
                    I'm going to up his peg food tomorrow. It will be a fight but I'm up for this.
                    he uses his fork like needs to kill what's on his plate ๐Ÿ˜ฏ

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                      #11
                      Iโ€™m 5โ€™8โ€™ and 69 kg and I take one 1000ml tube feed (1500 calories) and usually two calorie drinks (400 calories each) per day so that adds up to 2300 calories a day, seems a really good balance. Before having the tube fitted I went down to 66 kg because of the struggle eating enough every day but since the tube fitting put the weight back to normal. Iโ€™ve always been around 69/70 kg for many years.

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                        #12
                        He's only on 500 calorie feed at the moment the plan was to up it gradually but it's taken away his appetite. He was eating well before the peg feeding but now he just wants toast. I'm going to try and add at least another 250 today. If I try him on porridge and bacon and some roast chicken it might encourage him to eat. The peg feeding was supposed to up his calorie intake but until he's on 2500 at least it's doing the opposite. I don't know if he's just depressed everything is getting both of us down. I don't think we are coping very well.

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                          #13
                          Please don't insist that he eats normally. The sheer relief of not having to is unbelievable. My pump feed has brought me back from the brink and it can help you too. ๐Ÿ˜๐Ÿ‘x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            #14
                            Denise, I completely agree with Matthew. I spent months trying to get Neil to eat. Spent so much time thinking of high calorie foods and cooking for him, and then for him not to eat it, and then worry about weight loss. I found it all consuming. Now heโ€™s on PEG feed only and itโ€™s such a relief for us both. Lx

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                              #15
                              The grocery bill goes down too. Double bubble chicken dinner! x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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