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    Chewing and swallowing issues

    I can’t chew any longer and can’t swallow pills so had to take them with vegan yogurt. I’ve just had 2 scrambled eggs, easy except hands weak. I’ve bought a vegan meal substitute from Amazon but it won’t be delivered until Friday.

    I’ve got an appointment with Wythenshaw breathing team next week (12th), and hope that they don’t cancel with all the Greater Manchester Hospitals having difficulty meeting appointments and that they get me a PEG urgently, otherwise I’m going to waste away.

    What did you all do with similar difficulties pre-PEG? I’m dairy intolerant so makes finds meal substitutes harder. 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
    Sorry to say this but it illustrates the need to get a PEG early. If only for peace of mind. ✌️🙏🙄🤗xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      Originally posted by matthew55 View Post
      Sorry to say this but it illustrates the need to get a PEG early. If only for peace of mind. ✌️🙏🙄🤗xx
      Yes true Mathew but I’m worried now 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


        #4
        You are in my prayers tonight. 🙏
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Thanks Mathew.
          My speech and language nurse is coming Monday at 10.30am 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
            Lynne K some Ensure drinks might be dairy free? Could your hospice team offer advice/prescribe?
            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.​​​​​​

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              #7
              Lynne K Is it lactose intolerance or something else? xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
              .

              Comment


                #8
                Sending you big hugs Lynne. Im so sorry that you're having such a distressing time with swallowing and also with transferring.

                I really hope you get the support you need quickly. Xx😘🤗🤗

                Comment


                  #9
                  No not lactose it’s milk protein that I’m intolerant to 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


                    #10
                    Originally posted by Deb View Post
                    Sending you big hugs Lynne. Im so sorry that you're having such a distressing time with swallowing and also with transferring.

                    I really hope you get the support you need quickly. Xx😘🤗🤗
                    Thanks Deb, husband Steve tired with having to get up in the middle of the night. Luckily I can still stand to go to the loo independently but that’s today. I obviously don’t know if tomorrow will be the same and even if so I’m losing the use of my hands 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
                      Originally posted by LindaB View Post
                      Lynne K some Ensure drinks might be dairy free? Could your hospice team offer advice/prescribe?
                      Thanks Linda, I don’t know but Speech and Language assess me on Monday 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


                        #12
                        Lynne K

                        I am the same but find some foods ok. Try soup or baked potatoes with tuna although guess you can't have mayo. Leave the skin. Tinned ravioli or even frozen Chinese dumplings. Are you veggie in which case quorn in a shepherds pie or with cut up spaghetti or macaroni. For puddings I guess it is more difficult for you but maybe soya puddings. I have Altraplen as my supplement drink and they taste nice. They have helped me stabilise weight loss and put some back on.

                        Sending hugs 🤗
                        Diagnosed 3rd November 2021 Bulbar Onset

                        Comment


                          #13
                          GillB no I’m not veggie just dairy intolerant so eat vegan yoghurt. I could manage shepherds pie last night but every day is different isn’t it 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
                            Hi Lynne K,
                            Can you ring SALT to get advise before your appointment next week?Is there a nutritionist in the team that can help you?

                            My RIG was fitted months before I needed it but I had lost weight pre diagnosis due to anxiety.The respiratory team advised to have it fitted for when needed.

                            At least if you have some advise from SALT, nutritionist it might relieve the anxiety.It’s awful for you when so many symptoms happening all at same time.

                            GillB has made some suggestions for food she manages.
                            Thinking of you …
                            Mary

                            Comment


                              #15
                              Mary C SALT is the best person to speak to according to my OT and the SALT is coming Monday 10.30am.

                              I replied to Gill’s suggestions thanks 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

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