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    Liquid meals

    Had a very nice vegan strawberry liquid meal with all nutrients in. But it’s £40 from Vivo plus postage for 34 meal equivalent (dry and add your favourite milk. For me oat milk). The other that I bought was cheaper, about £20, and ‘vanilla’ similarly all nutrition but disgusting. I hope what the local nutritionist is sending me is better. 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.

    #2
    I hope the nutritionist sends something palatable. I dread needing to have shakes because I am such a fussy eater anyway.

    At what point did you/ someone decide it was necessary? I've lost a fair bit of weight, but making a real effort now to stabilise it (now I know why I lost weight).
    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


      #3
      TinyLady

      Have you seen a dietician yet? It is usually an intervention when you have lost a significant amount of weight i.e more than 10% of your body weight. I was prescribed Altraplen drinks on her first visit. They are quite nice and she gave me a few others to try. I had been losing weight and didn't know why until my diagnosis. Significant weight loss is also a factor in getting a feeding tube early.
      Diagnosed 3rd November 2021 Bulbar Onset

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        #4
        GillB - I have lost 20% of my body weight. I had no idea why as no-one was taking my symptoms seriously for over a year. Now of course it all makes sense.

        I have an appointment to see a dietician, but not until March! Thankfully over Christmas my family were around and have been feeding me constantly, so regained a little.
        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


          #5
          Originally posted by TinyLady View Post
          I hope the nutritionist sends something palatable. I dread needing to have shakes because I am such a fussy eater anyway.

          At what point did you/ someone decide it was necessary? I've lost a fair bit of weight, but making a real effort now to stabilise it (now I know why I lost weight).
          Hi, I had trouble with meat and hard veg. Funnily enough I’ve had two vegan pasties since having liquid meals mostly. These vegan pasties from Morrisons are soft inside and the pastry is soft enough. I’ve also had mashed potato and wizzed up mince and veg. That obviously depends on how long my dodgy hands decide to keep working. I use my left hand with a desert spoon.

          I have big problems swallowing tablets but so far managed with lots of effort to swallow capsules but paracetamol capsules are bigger than most so really hard to swallow.

          I put my name down for a PEG. The reasons given to the breathing specialist were my hands and chewing/swallowing problems. I’ve lost a little bit of weight. He agree but said that it would be a few weeks. That was about two weeks ago.

          If you’ve lost weight then I think it’s time to consider a PEG. Lynne 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


            #6
            TinyLady

            March is a long time to wait. Dietician was the first person I saw. If you can get her to come earlier as they have lots of good advice. I managed to put some weight back on. My loss was 10kg. Double cream on and in everything and fortified full fat milk made with four tablespoons of marvel.
            Diagnosed 3rd November 2021 Bulbar Onset

            Comment


              #7
              Originally posted by GillB View Post
              TinyLady

              Have you seen a dietician yet? It is usually an intervention when you have lost a significant amount of weight i.e more than 10% of your body weight. I was prescribed Altraplen drinks on her first visit. They are quite nice and she gave me a few others to try. I had been losing weight and didn't know why until my diagnosis. Significant weight loss is also a factor in getting a feeding tube early.
              Thanks Gill. The local nutritionist phoned a few days ago and spoke with Steve. She’s sending me some non-dairy samples. I’m milk protein intolerant so have to be careful what I eat or get the runs (obviously I can’t run).

              Do the Altraplen drinks contain dairy? Lynne 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
                Originally posted by GillB View Post
                TinyLady

                March is a long time to wait. Dietician was the first person I saw. If you can get her to come earlier as they have lots of good advice. I managed to put some weight back on. My loss was 10kg. Double cream on and in everything and fortified full fat milk made with four tablespoons of marvel.
                That’s good that you’ve put weight back on. I can’t have cream so more difficult for me to make sure that I don’t loose more weight, Lynne 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


                  #9
                  Lynne K

                  Unfortunately it says not suitable for those with a cow's milk allergy. x
                  Diagnosed 3rd November 2021 Bulbar Onset

                  Comment


                    #10
                    Thanks Gill 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


                      #11
                      I've said this before but I miss eating more than sex. I was loosing weight until I sorted out my feed. 🍜🍧🍰🥪xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        I really fancy poached eggs on toast so asked Steve to do this. I’ll give it my best shot and take my time. If the toast is too much to chew then I’ll end up with just the eggs 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


                          #13
                          GillB - I am yet to be seen at the MND clinic and get diagnosis "confirmed" - so some things are getting rushed through anyway, but some areas won't recognise the urgency until I have confirmed diagnosis. It's been a nightmare.

                          My weight loss is 14kg, but I weigh very little to start with. I'm very tiny 🙂

                          They have also insisted on a phone appointment (agreed with my husband) which irritates me as I can't speak well so I will sit there annoyed while they discuss me.

                          Lynne K - my swallowing and chewing is effortful, as is use of my hands. I tend to find if I have been talking (however badly) then I have less energy or appetite for eating.... ice cream is a good option for me, but obviously not for you, that must make it so much harder.
                          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


                            #14
                            I managed the poached eggs on toast and going to have a vegan yogurt to finish. They say that a little bit of what you fancy does you be good. I really enjoyed that after two weeks of mostly liquid food 😀 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 TinyLady View Post
                              They have also insisted on a phone appointment (agreed with my husband) which irritates me as I can't speak well so I will sit there annoyed while they discuss me.
                              That's not on TinyLady Insist on a video consultation, with a chat facility, reminding them that you are the patient, not your husband. 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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