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    Food

    Hi everyone,

    Would really appreciate some advice. Christmas has really highlighted mums deterioration with food. She had a peg fitted prior to Christmas and currently we are supplementing with either two shakes down the PEG or two shakes orally.

    Mum is mostly only managing liquid food now but she hates it. She misses fresh food in particular she used to like a large salad.

    Any suggestions of foods that are not liquid but tend to work? Or food ideas in general.

    She also struggles with regurgitation mid food and says it feels like something catches her throat. I know it sounds stupid but every bit of alcohol she can’t have. She loves wine and I would love to find a way to make it work!

    thanks everyone in advance
    sara.williams
    Forum Member
    Last edited by sara.williams; 26 December 2021, 23:42.

    #2
    Hi Sara,
    I would by go by speech and language therapists suggestions.Your mom might need a swallow test performing.
    I had a RIG fitted in June and by Christmas I now have supplements via the RIG only.I can take liquid drinks such as tea, water, wine.The SALT nurse suggested thickener in drinks but aI have deferred that for a while.
    Initially post RIG I had bite size , soft diet but my appetite waned so I couldn’t maintain my weight so needed supplements.
    Hope your mom gets the issue sorted.
    Regards
    Mary x

    Comment


      #3
      sara.williams
      Forum Member
      sara.williams Hi Sara, I have reached the stage where I have lost interest in food. People's tastes differ but I found that the easiest way for me to eat salad was in a sandwich made with “moist” or “pappy” bread with plenty of mayonnaise. I’ve also found creamy “sloppy” scrambled eggs easy to eat.
      Rosemary6NT
      Forum Member
      Last edited by Rosemary6NT; 27 December 2021, 09:38.

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        #4
        I Peg whizzed up curry, wine, champagne, coffee, beer and water. I also take an occasional feed. 🍻☕🥂😉😊😁xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          sara.williams
          Forum Member
          sara.williams I think I must be about the same stage as your mum, and like her I really hate giving up eating ordinary food, but the choking it gives me is putting me off! (And if I get a chest infection as the result of choking then I'm sure I will regret it more, but luckily this hasn't happened so far). Salad I find very difficult to eat, and grieve not being able cope with a lovely fresh organic veg bag each week as I used to.
          Oakhouse sell some pureed microwaveable foods that I really didn't like the look of, but actually can be quite comforting to eat as they slip down quite easily. I find adding cream and yoghurt help me cope with foods. My favourite gin and tonic and wine I find difficult (yes irritate my throat) to drink. You can put alcohol down your tube, but not quite the same enjoyment!
          Heather x
          Diagnosed July 2020, ALS bulbar onset.

          Comment


            #6
            https://www.mndassociation.org/suppo...-and-drinking/

            sara.williams
            Forum Member
            sara.williams there's a guide to foods 👆👆👆👆

            I think soft foods like cottage pie....spag bol....good soups....are easy to eat. Scrambled eggs....fish pie if creamy. There are many.

            I can still eat a Caesar salad but careful with any tomatoes because of the skin. Chop up the lettuce. While I can I will.

            I think it's trial and error as we are all so very different.

            Alcohol again depends what you can tolerate a Baileys might be ok for some....

            I also don't try if I'm particularly tired....so times of day matter.

            Your SALT team are the experts but my view is I know me best. 😘
            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.​​​​​​

            Comment


              #7
              Originally posted by sara.williams View Post
              She also struggles with regurgitation mid food and says it feels like something catches her throat.
              TBH Sara, that's a red flag and something which risks aspirating food/liquid into her lungs - is it worse on liquids or gloopy food?

              . That said, if your mum wants to carry on regardless, maybe she could take the majority of her calories, more than 2 bottles, through her tube (if she doesn't like their taste, there's alternative mouth, without tastebuds directly into her stomach 😉) and eat some tasty morsels during the day for taste.

              I love my salads and eat small portions of very finely chopped salad veg - Greek is my favourite, or an Italian, but I love any combination reallyand I understand her love of fresh food! I cannot stand the consistency of pureed food and would rather take calories down the tube.

              Eggs are great, versatile and easy to eat, egg mayo with added cherry tomatoes, peppers, cheese etc (finely diced), omelettes or scrambled eggs or maybe even frittata (another favourite of mine)

              If your mum hasn't recently been seen by a Dietitian or an SLT, it might be good to be seen.

              Love Ellie.

              ​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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                #8
                Thanks so much everyone, think it’s all just trial and error

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