Announcement

Collapse
No announcement yet.

Excess saliva

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Excess saliva

    I am using these patches which doesn't help for excess saliva. Are there alternatives? I need suggestions for soft food to swallow. I have googled. I need ideas as I cook for my family also and do nit want to be doing separate meals.

    #2
    If anyone has any ideas would appreciate a reply as i am starting on the journey with bulbar palsy mnd which I am finding incredibly difficult

    Comment


      #3
      Hairbsb When did you get the firm diagnosis?

      Yes, there are alternatives to hyoscine, including glycopyrronium, atropine, amitriptyline, Botox injections.

      Ask your MND Nurse, Neurologist or GP which might suit you best to try next.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Well on 17 May. I am on hycosine but it doesn't make a difference. Thanks for replying I appreciate it as feeling quite isolated (my fault as I thought in my stupid mind I can do this alone and was being stubborn and idiotic) I was wrong. I have a care team just awaiting the diagnosis but even they know as they said have you read the letters. Well of course I have ! My swallowing is apparently a struggle but I just got used to it.

        Comment


          #5
          Hi

          If you look up soft diet. Or "soft and bited sized"

          Cottage pies, eggs ie smashed or poached

          Lots of different soups.

          Most things can be blended as well. The dietician can supply fortified drinks, so you are getting maximum calories per bite.

          I added cream to everything as eating can be tiring too.
          Donna

          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

          Comment


            #6
            Have you looked at the MNDA guide to eating and swallowing. I am still eating ‘normal’ meals but have found this guide useful.

            https://www.mndassociation.org/app/u...de-2020-V1.pdf
            Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

            Comment


              #7
              Hi Hairbsb my dad has bulbar onset and he was put on glycopyrronium bromide for excess saliva. I've heard of drops that go under your tongue (I think they are called atropine as Ellie has mentioned). Hopefully a chat with the GP or neurologist will help identify what might be best for you.

              ​​​​​​​there's a scale in terms of the affect on your swallow which is normally assessed by a speech therapist and that looks at whether you would benefit from fork mashed / moist food through to pureed. My dad was a plain eater so tended to eat things like porridge, cottage pie, mash, veg, fish, eggs. His favorite was puddings, apple crumble with ice cream, angel delight, mashed fruit. He didn't have to think about cooking meals for a family. He was advised to add cream and butter to make foods more moist and get more calories in.

              Everyone deals with this situation, whether it's them or a loved one affected, in their own way but you don't have to do it alone when there's so many people here going through similar with lots of advice to offer from their experiences.

              Comment


                #8
                Thank you. So much. I am trying to be positive x thanks for the food suggestions. I was a little plumper before all of this and now I'm getting slim which worried me. I funnily got my husbandto buy single cream and tinned fruit and I'm trying salmon tonight

                Comment


                  #9
                  Thank you all. I Really appreciate your input. I felt all was over to be honest and what's the point but there is lots of point. Just need to adapt from the lifestyle I had. I was sleeping alot I suppose that's how I coped but that isn't right. I need to get my head out of my @@@@ and stop feeling sorry for myself and just get on with it x

                  Comment


                    #10
                    It's totally understandable to react in that way, it's news no one ever wants to hear and there's a lot to adjust to. Have you been offered any psychological support? It might help alongside all the practical support the speech therapist, physio and OT will be able to offer.
                    Hope you enjoy the salmon. Melting grating cheese into things like potatoes is another way to up the calories.

                    Comment


                      #11
                      Not as yet. I get my diagnosis on May 17 . Just feels like a nightmare right now in my mind. I just can't accept it. Thanks . I think I'll ask when I got to see the head neuro

                      Comment


                        #12
                        I would just add radiotherapy on saliva glands to Ellie’s list. It worked for me until muscles in my mouth and lips weakened allowing saliva to escape although I like to think the problem would be worse without the RT. Let me know if you want more info.

                        I have tried most of the meds in Ellie’s list which didn’t really work for me. I am using Hyoscine patches which work upto a point.
                        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                        Comment


                          #13
                          Thank you John. I'm at the first stage of bulbar palsy I believe. To be confirmed next week. I do not feel. So isolated now. The saliva escaping from my mouth is an issue also. Luckily I wear a mask on the bus otherwise the person in front would think its raining when I laugh

                          Comment


                            #14
                            Hairbsb - good to see you came back on here. I hope we can all look after you xx
                            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


                              #15
                              TinyLady thanks to you. You have been so supportive and made me laugh too and made me see reason. I am not always right , I need to channel my stubbornness into positivity x

                              Comment

                              Working...
                              X