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    Hi Everyone, this is my first post on the forum, though I have read a lot of he posts already. I was diagnosed with Progressive Bulbar Palsy on 25 March 2020. Needless to say it came as huge surprise for me, my wife and kids, but you just have to get on with it don't you? Speech and swallowing are the main impacts for me, no limb weakness yet. Have also just agreed to get a PEG fitted in the coming weeks. Live in Perth, Scotland with wife, Lynda and kids, Euan, 18, going to university in two week and Emma and Scott, twins of 17, in 6th year then university next year. Covid has been a pain in terms of lack of face to face consultations but getting better now. I retired from work in early May.

    Anyway, that's my first post.

    Take care everyone,

    Neil,

    #2
    Hi Niel and welcome, for better or worse this is where we are. It's up to us to make the best of it! 😀x

    Comment


      #3
      Hi Neil and welcome.

      I’m pleased you have had the courage to join us as many people don’t want to accept the diagnosis and that’s okay because we’re all able to deal with it in our own way. I’m aware that there is a different MND support team in Scotland and I hope they have offered you a good care team. The fitting of a peg is a good start.

      Best wishes,
      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Hi Neil and a warm welcome to you.

        Sounds like you've a busy household there!! I have a 17yo and a 19yo (final year of upper secondary & 2nd year Uni) and having them at home for so long has been a big bonus 😍

        Good luck with the feeding tube. Have you banked your voice or discussed speech Apps with anyone?

        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


          #5
          Hi Neil,

          A warm welcome to the forum from me and well done for joining us. It's a good place for friendship and support and there's usually someone with an answer to a question.

          I am sorry for your diagnosis...Its such a shock ! It sounds like your positive attitude and close family will really help you.

          Take Care and good luck with the fitting of a PEG.
          Love Debbie x

          Comment


            #6
            Hi Neil, welcome to the club.
            Regards Jerry

            Comment


              #7
              Hi Neil,
              Last edited by Gemstone189; 2 September 2020, 21:17. Reason: Error

              Comment


                #8
                Hello Neil. Welcome to the forum. You will get a lot of help here from those who have had this horrible disease for a while and can share their experiences and give advice.

                Wishing you peace and happiness

                Richard

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                  #9
                  Thanks for all your kind words guys, much appreciated.

                  Neil.

                  Comment


                    #10
                    Hello and welcome! Im new at the forum as well.
                    Stay strong Neil.
                    Good luck to you and your family. I can only imagine how happy you must be having so many kids.

                    Comment


                      #11
                      Hello Roy and welcome to our exclusive club where membership is random.

                      You will find good advice and support from this family and if you want a rant then we hear you since MND invokes many emotions.

                      Best wishes,
                      Barry
                      I’m going to do this even if it kills me!

                      Comment


                        #12
                        Hello Neil, hello Roy, A warm welcome to you both
                        As long as there’s golf and beer I’m happy

                        Comment


                          #13
                          Hi Neil,

                          We're also in Scotland! Welcome. Hope you're getting on ok. I know MND Scotland do video support groups in place of the various in person support groups right now with Covid (mind you we've never used this yet).

                          MND Scotland have been great so far in all aspects, but couldn't find an online forum, so came across this one and some great advice and chat so far. We also got the family to buy the mynamesDoddie facemasks too, supporting the charity while staying safe I guess and a bit off fun wearing the crazy tartan haha.

                          Hopefully the retirement has meant more quality time with the family before school and uni start back.

                          Tess x

                          Comment


                            #14
                            hi neil
                            nice to meet you. there's lots of friends on here so make sure you join in.

                            Comment


                              #15
                              Hi Neil

                              I joined in July 2020 on behalf of my husband. I am from Glasgow originally, we live in North England. The My name is Doddie podcasts are great, the 6th one is on what is happening with treatments and there is a trial started in Dundee last month. So movement is happening regarding managment and treatments. On You Tube if you are interested is Australian MND have great videos too.

                              Husband Thomas has mainly limb weakness but everyone is different, the support and information I have had in the last 2 months here. Have been invaluable.

                              Thanks everyone

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