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    #46
    Hi Dis,

    Sounds confusing, having the offer of a bed in both hospitals. I would suggest you ring the MND nurses to ask them to explain. Do you have their telephone number?
    Dina

    Trying to keep positive, but not always managing.

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      #47
      Dina, the consultant is Ms Chaouch and as soon as we got to Area 3 she appeared and exclaimed “ Mr Douglas you made it today”

      Terry and Ellie
      Both beds are for the sleep study/ breathing tests after I mentioned that my nose is almost permanently blocked with catarrh - 1 bed today at Salford Royal and 1 today or tomorrow at wythenshaw

      So tomorrow I’ll be admitted to Wythenshaw

      Comment


        #48
        Hope it all goes well for you.

        Though 'sleep study' is often a misnomer with so many wires and probes attached to you!

        X
        ​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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          #49
          Hi Dis;

          Sounds like a few nights of good sleep, not. seams crazy to go straight from one to another hospital.

          Best wishes, 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.

          Comment


            #50
            Dina, John Ealing was the neurologist that I saw in 2016 in Fairfield Hospital Bury as an outreach clinic. He sent me for an MRI on my spine (that showed seriously degenerated discs) and then discharged me. I didn't realise that he'd discharged me. 10 months later I went back to my GP. He was very annoyed that I hadn't received a further appointment so he re-referred me. That time I chose to go to the main hospital in Salford. This was much further but I was treated much better. I've spoken about this previously so I'll leave it there. Lynne
            Last edited by Lynne K; 31 May 2019, 15:50.
            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.

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              #51
              Hi Dis,

              All the best for your sleep tests.

              When you saw Dr Chaouch, did she have the registrar, Andrew Sneddon, in with her? I think he's a bit of a hot shot (as well as pleasing eye candy!). He and I were talking about various research projects - all neuro but not all MND - including one involving electrical stimulation to the diaphragm.

              If you are having a PEG fitted, were you invited to be on Dr Hamdallah's PEG study? If not, would you be interested?
              Last edited by Gillette; 30 May 2019, 19:14.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #52
                Hi Lynne,

                I remember you talking about John Ealing last week. Yours was such a different experience from mine. I have been very happy with the way he has treated me. I suppose it's different strokes for different folks.
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #53
                  Dina, yes Andrew was in the room and was adept at reading what I was typing whilst incomplete
                  There was a geneticist from St Mary’s as well

                  Comment


                    #54
                    Originally posted by Dis1960 View Post
                    Dina, yes Andrew was in the room and was adept at reading what I was typing whilst incomplete
                    There was a geneticist from St Mary’s as well
                    Yes, Andrew is very bright. I get the feeling he will be a high flier. I don't know anything about the geneticist as my MND is not genetic.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #55
                      Greetings from sunny Wythenshaw ��

                      Comment


                        #56
                        Originally posted by Dis1960 View Post
                        Greetings from sunny Wythenshaw ��
                        Good luck!

                        My son, who lives in Essex, asked me where Wythenshaw was. I said it's so far south from Radcliffe that it's classed as the south of England!
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #57
                          Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples

                          Comment


                            #58
                            Dina, Lynne and Dis,

                            I think it must offer a degree of comfort that you all can chat about, and compare notes on, your clinic experiences?

                            The Manchester Amigos

                            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


                              #59
                              Thanks Ellie x
                              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


                                #60
                                Hi Dis;

                                Taking arterial blood out of the wrist can be hard and painful. Not always but i have mine taken from the ear, they reckon it's not quite so accurate.

                                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.

                                Comment

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