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    #31
    We get everywhere don't we 😁🤗🍪😍xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #32
      Lynne K hope today is better one for you xxx
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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        #33
        Hi Lynne,
        Big hugs..
        I know that for my husband both the Niv and Peg improved his quality of life, Both take some time to get used to. Hope this week goes better for you xxx

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          #34
          Lynne K sounds like a mixture of good and not so good at the moment. Hope you feel better after a shower.

          Is it possible to remove the front part of the mask (detach the tube) and use a straw for a drink in the night?

          Thoughts are with you Lynne 🙏💙
          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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            #35
            I’m having the PEG then going to a palliative care home whilst CHC is sorted out for home. I need a night carer to manage my c-pap, mask, turn me to save bed sores, take mask off and give drinks, spray my dry mouth, put Vaseline on my dry lips, manage my stoma and call 999 if it goes pear shaped. I want to top myself before it gets much worse but how the hell do I and Steve objects, says he thinks that I’ll last years. That’s what I’m worried about, lingering. My hands are still just about working. I’ve been doing my teeth night and morning but one of these days I’ll wake up and they won’t work. That’s what I’m most worried about., well not true my breathing and my hands.

            Any tips for ending it all?
            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.

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              #36
              Originally posted by Lynne K View Post
              Any tips for ending it all?
              If you're serious about ending it Lynne, I must admit to being confused as to why you're using CPAP and putting yourself through the PEG procedure...

              I hope you get 5 star treatment in your "palliative care home" and get home with your CHC sorted.

              Love and hugs 😘😘🤗🤗
              ​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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                #37
                Lynne K Oh Lynne, I have no words as I have the same question going round in my head. I just want to send you love and strength, xx
                Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                  #38
                  Thanks Ellie but I don’t want to lie in a bed struggling to breath, having no movement and having everything done for me. I’m having the PEG and using the c-pap both to make things easier whilst I still have some speech (not much) and some use of my hands (not much). Time to decide what to do, if there is anything for me to do? Xx
                  Last edited by Lynne K; 7 February 2022, 19:43.
                  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.

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                    #39
                    Lynne K Hope PEG procedure goes to plan. 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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                      #40
                      PEG yesterday, very painful night. X 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.

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                        #41
                        Originally posted by Lynne K View Post
                        PEG yesterday, very painful night. X xx
                        Sorry to hear that....hope you get adequate pain relief today.💙🙏
                        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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                          #42
                          Originally posted by Lynne K View Post
                          PEG yesterday, very painful night. X xx
                          I had that too. They had put the fitting on too tight. The white triangle (in my case) was pinching into me. When PEG nurse loosened it I got relief
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #43
                            Pretty soon you'll be doing it yourself. 😁🤗❤️😍xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #44
                              It does get less painful. I too had the fixer put on too tight. Make sure they give you plenty of painkillers. Once it is loosened it gets much better.
                              Thinking of you x
                              Diagnosed 3rd November 2021 Bulbar Onset

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                                #45
                                Lynne K Good to hear you’ve got a plan sorted out post hospital. The PEG shouldn’t be painful so I’m very hopeful you will get that sorted today. In my experience just being in hospital makes everything seem much worse because you’re in a strange environment and it’s usually hard to sleep well. Best wishes
                                Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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