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    #31
    Hi Lynne,

    I hope you are feeling a bit better today and that you cough has started to ease a bit. Hopefully the medication your GP prescribed will help.

    Love,
    Kayleigh x

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      #32
      Hi Lynn

      How are you doing now?

      Last few days my dad has started coughing too, feeling like he needs to clear his chest but can’t cough strongly enough to get it up

      It is worrying. Hoping it’s more different bad luck rather than the mnd progressing as he only had breathing tests last week and the hospital didn’t mention them so presuming they’re ok?

      Hope you are xx

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        #33
        Hi Vicky,

        Any sudden onset cough and / or inability to clear phlegm should be checked out by his GP to rule out infection, pneumonia etc.

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

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          #34
          Originally posted by JAY TEE View Post
          Lynne, I formally diagnosed coming up 5yrs and had peg fitted two years ago but only use that few times a week as I can still eat well as long it’s minced up. My saliva very thick and drooling bad. I have patch behind ear and Carbocisteine 5ml three times a day an eye drops on tongue. I also in morning Lansoprazole tablet. I have a sucking machine which good to clear mouth and throat before eating. Also breath machine sending strong wind down throat so helps control the mouth and throat. Best wishes John
          Hi John, I noticed this post from earlier this year. How are you doing now? I was only diagnosed in August this year but already my bulbar symptoms are quite bad. In particular my throat muscles are weakened. I’m having a PEG fitted next week and I was given a cough assist machine today. My speech has pretty much completely gone. So I’m scared of what this all means. But it sounds like it can still be manageable (taking into account everyone is different of course)? Best wishes, Sarah

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            #35
            Hi Sarah, sorry to butt in. Your symptoms sound a bit like mine. My speech has gone now. I have a appointment tomorrow for a neck brace, and on Monday another appointment to talk about having a peg done. Good luck next week.
            I see all the Christmas adverts on the telly, but I can't get in the mood this year.
            Best wishes, Sheila.

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              #36
              Hi Sarah,

              Hope next week goes to plan.

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

              Comment


                #37
                Hi Sheila,

                I hope you get on well on Monday. I know you will be anxious at the appointment, but you know a bit of information about feeding tubes and you now know lots of your new friends who have one

                We'll be here to help and support you, whatever you decide.

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

                Comment


                  #38
                  Hi Sheila,

                  I hope everything goes well at your upcoming appointments.

                  It seems that as soon as each of us start dealing with one challenge, it's not long before we are faced with some more. I am losing my ability to talk but I find that using a speech app on my i-pad is very useful. Hopefully you have a speech therapist who is very helpful and can source any suitable communication aids for you, if you would like her or him to.

                  Love
                  Kayleigh x
                  Last edited by Kayleigh; 13 November 2019, 18:23.

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                    #39
                    Hi Sarah,

                    I hope everything goes smoothly with your PEG operation next week.

                    Love,
                    Kayleigh x

                    Comment


                      #40
                      Hi Sarah and Sheila

                      Good luck for next week. I found actually having the PEG fitted was much easier than I had anticipated. Having it in place takes the pressure off me for eating and makes it simpler to keep my fluid intake up.
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        #41
                        Hi Sheila and Sarah, All the best from me too for next week.

                        Sheila, I hope your appointments are not too bad or stressful and Sarah I hope your PEG fitting goes as well as possible.

                        Love Debbie x

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                          #42
                          Hi all, well my neck brace appointment has been cancelled for tomorrow. That's the second time.
                          Dina did you feel anything during the peg procedure? I am nervous for Monday's appointment. But I have to go and get something sorted.
                          Sheila x

                          Comment


                            #43
                            Hi Sheila,

                            Sorry to hear that your neck-brace appointment has been cancelled again Sheila (and at such short notice).

                            Hopefully, you won't have to wait very long to get another appointment.

                            Love
                            Kayleigh
                            Last edited by Kayleigh; 23 November 2019, 22:40.

                            Comment


                              #44
                              Sorry about your cancelled appointment Sheila and much good luck for Monday, Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment


                                #45
                                Hi Sheila

                                I had sedation for the procedure so there wasn’t any pain or discomfort at all. When the tube was pulled down my throat I knew it was going down but there definitely wasn’t any difficulty. There was a slightly weird sensation but it didn’t hurt at all. Honestly, it was really easy to go through. I was surprised how easy it was. In fact, I was so fine afterwards it was no problem having a second, different procedure just a couple of hours later. And, believe me, I’m the world’s worst coward.
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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