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    Using thickener in fluids

    Hi
    After a swallow test I am now advised to use a thickener in fluids( yuk).
    How do people get on with thickened fluids…is it just another thing you get used to easily?

    Doesnt sound great in tea etc!
    Best wishes
    Mary x

    #2
    Mary C sorry to hear that. I think I'd probably rather not have a cuppa if it has to be thickened. You're right it doesn't sound great!I

    xx
    ​​​​
    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


      #3
      I have a dry mouth constantly for a year now despite changes in medications and reducing doses.It drives me nuts as I wake at night desperate for a drink to relieve dryness.I have tried sprays, gels, pineapple juice, glycerine swap sticks all give very short term relief.
      Neurologists or respiratory consultant not been able to come up with any relief to date.
      Now thickeners as swallow not as efficient…moan over!!
      Think I will stick with water and weak squash plus thickener !
      Best wishes
      Mary


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        #4
        I was given some thickener but I never got on with it.
        ​​​​​
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Originally posted by Mary C View Post
          Hi
          After a swallow test I am now advised to use a thickener in fluids( yuk).
          How do people get on with thickened fluids…is it just another thing you get used to easily?

          Doesnt sound great in tea etc!
          Best wishes
          Mary x
          I tried that about eighteen months ago. Yuk indeed. I never do now.

          Good luck with getting used to thickeners Mary 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
            Mary C Hi, I started using ThickenUp Clear over a year ago. It’s ok and doesn’t taste of anything at all! But I use it selectively.

            Water and tea are particularly ‘thin’ and I find they have to be thickened. The alternative is a choking episode.

            I can drink cappuccino without thickener, or maybe with just a tiny amount. I’ve also found that fizzy drinks are ok without (lager, Cava, Prosecco, Champagne 😀) . The bubbles seem to make fizzy drinks much easily to swallow.

            I have to use thickener in red wine, but more expensive rose and white wines are ok.

            Don’t be too put off - as a result of using it I have been spared a chest infection since I started using it.
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

            Comment


              #7
              Originally posted by Mary C View Post
              How do people get on with thickened fluids…is it just another thing you get used to easily?
              Let them prescribe it and try it in different drinks, it tastes different in water than it does in tea and coffee, or even wine 😉 It can also be used in food and handy enough for soups, sauces and casseroles etc.

              If you do get it, ask for the 'Clear' version to be prescribed.

              I don't know if drinking through a shortened straw would enable you to drink without thickeners for longer? Of course, only if safe to do so, and you can use the feeding tube for the bulk of your fluid intake and save your energy for drinking in company.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                I'd agree with Peter's comments. The thickener I'm using (produced by Nutricia) is tasteless - main constituent is Xanthun gum, which is used in gluten free cooking. I find you need to make sure that you don't put too much in though, so worth experimenting.
                I heard from a nutritionist recently that there is a specialist thickener you can buy for alcohol which ensures no change to its taste!
                Best

                Robin

                Diagnosed 05/2017 Familial ALS Limb onset

                Comment


                  #9
                  Hi Matthew and Lynne

                  Well how do you manage drinks without the thickener? does it bring on swallowing problems and coughs?Have you ended up with chest infections?

                  I mainly drink water and squash through a straw but will give thickeners a go.

                  Best wishes
                  Mary

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                    #10
                    I also use a straw and find squash thicker than water. I'm only just starting to need thickener. I use it in water and find it OK.
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      shelly21
                      Hi Shelly, good to compare notes! Speech therapist said using the thickener stops liquids going down wrong way and causing chest infections.I will give it a go.Another thing to take visiting I guess .
                      Have a good day.
                      Best wishes
                      Mary

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                        #12
                        As with all things recommended Mary C it depends on you...if you're choking on liquids or there are some you can manage. I'm not saying go against advice just that we all can consider the advice and make a choice if possible. Your feeding tube will ensure you have enough fluid intake so that's good.
                        Take care 🙏😘
                        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


                          #13
                          Originally posted by Mary C View Post
                          Hi Matthew and Lynne

                          Well how do you manage drinks without the thickener? does it bring on swallowing problems and coughs?Have you ended up with chest infections?

                          I mainly drink water and squash through a straw but will give thickeners a go.

                          Best wishes
                          Mary
                          Hi Mary,
                          I just very carefully swallow using mouth throat and tongue muscles. I take some water in my mouth then move the back of my tongue up and cheek muscles in to hold the water until my throat is ready to swallow it in a gulp. No choking for a long time and no chest infections had 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


                            #14
                            I can no longer take drink through the mouth. I was talking about the past. 🍺🍻😭😉xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              @Matthew
                              Hi Matthew, how do you keep your mouth moist?now you don’t take drinks?
                              best wishes
                              Mary

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