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Peg consultation

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    Peg consultation

    Hi all, I've got quite a bit worse in the past 6 months. Have bulbar involvement now,and what a bugger it is when you cant go to the loo by yourself anymore! I love having the carers in though. And my beloved ex is working through my bucket list with me 😁
    So,yes, peg consultation this Thursday , i know its sensible, my swallow is going as is my last arm, but ive been finding it very upsetting..

    Good luck with your Peg consultation. I'm sorry about your deterioration Catsparkle. Take care. Lynne
    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.


      Hi Catsparkle,

      Sorry to hear that your condition has worsened. I am in a similar position and am due to have my PEG fitted next Monday .

      Do you have NIV? I have recently been told that the NIV will be in use during the procedure. If you don't have any breathing difficulties I imagine they would use regular sedation to insert the PEG.

      All the best for your assessment on Thursday.

      Trying to keep positive, but not always managing.


        Thankyou, my breathing was checked and was fine, so they'll sedate me. Good luck with your procedure Gillette, lots of love x


          Hi Catsparkle;

          It's a big step in your mind but a short small opp carried out with local anesthetic normally.

          It is there for a back up if needed.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


            Thankyou Terry x my consultant mentioned i could need it for meds, and there is no way in on earth i can do without my antidepressant! Im still putting on weight, so presumably it will be a bit til its used, but i know physically it's better to have it in earlier.


              Hi Lisa,

              I can relate to what you are saying about how upsetting it to lose our ability and independence to do some things. It can take time to get used to needing help but Its good you have got some carers to help you and hopefully you are happy with them.

              Sorry to hear you have problems swallowing. I don't have experience of a feeding tube but it sounds like a good idea so that you can still get all the nutrition and any meds you need.

              Its great to hear your ex is being helpful with ticking things off on your bucket list. I hope your lovely daughter is ok and everything got sorted out concerning your housing.

              Love and hugs,
              Kayleigh x


                Two weeks to go Kayleigh! We've had to stay at my parent's for almost six months which has been challenging, but the flat is shaping up lovely 😁
                The daughter is starting secondary school soon !


                  It's great your flat is nearly ready Lisa. I'm sure it won't take long for you and your daughter to settle in and add your finishing touches to make it comfortable and homely.

                  Not long now before your daughter starts secondary school. I hope she enjoys her time there and her first day goes really well.

                  The Summer hols will soon be over but at least the weather has been good and hopefully you've had some sunny and enjoyable trips out with your family.

                  I hope everything goes smoothly at the consultation on Thursday.

                  Best wishes to you and your daughter and I hope everything in the coming weeks goes well for you both.

                  Kayleigh x
                  Last edited by Kayleigh; 27 August 2019, 02:59.


                    Thankyou lovely, i appreciate it xx


                      Hi Lisa.

                      Of course it's upsetting for you - it's a brutal reality check isn't it At the same time, you know it's the sensible thing to do, and, once it's done, it'll take one bit of stress away.

                      If I can suggest something to you? It is always best that children know exactly how and why equipment and aids will help you, so maybe have your daughter give you a "drink" of water through your PEG so she will understand more and the tube is nothing to fear.

                      My own kids used my PEG from a young age and I often was a "Show & Tell" subject as they revelled showing their friends how to give me food and water!! The concensus was it was "so cool"

                      Hope your daughter enjoys her next big adventure of secondary school.

                      Love Ellie.
                      ​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


                        Thankyou ellie, i really really appreciate that advice. And yes, i definitely need ti have it, but i dont want to neeď it! But we've planned in a trip somewhere nice afterward, and my nutritionist is going to hold my hand (or see i don't back out,haha!)
                        Lisa x


                          Hi Lisa,
                          I am going through the same thing about the peg as well. I somehow need to get over my anxiety about it. The nurse said to me, you can always back out. Which dosent really help. Let us know how you get on Thursday.
                          Sheila x


                            Hi Sheila,

                            It must be really hard for you with your anxieties to go through the whole thought process of whether or not to get a feeding tube, then to have the procedure - I'm sorry.

                            I'm glad you've a supportive hand-holder

                            Do you think there's anything that would make you even a bit less anxious? Is there anything about the whole thing that particularly increases your anxiety?

                            Love Ellie.
                            ​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


                              Thanks Ellie, I think it is the thought of tubes going down my throat and into the stomach. Even thinking about it makes me gag. I know I am being silly, but it is a major thing for me. I don't mind so much about the hole they make into the stomach, if they could do it all from outside I would feel calmer. But there you go I have to get it right in my head and over come these anxieties. Also I fear choking during the procedure and bleeding. The list goes on. Thanks for listening Ellie you are very kind and have lots of knowledge,
                              Speak soon.
                              Love Sheila.