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    Dis1960 and Chrissie57

    I've moved this to a new thread with a better title


    I think it would be lovely for members to send hugs and other good things to Douglas and his wife, Chrissie. They had a disappointing day yesterday (I shan't give details as they are not mine to share) and I am REALLY hoping it all gets sorted today. If it doesn't, I can provide some effigies and members can annihilate them with pins, if you'd like.

    Sending hugs, best wishes and hope to you both.

    P.S. That was some beard you had, Douglas!
    Last edited by Gillette; 12 October 2019, 11:30.
    Dina

    Trying to keep positive, but not always managing.

    #2
    Sending good vibes and a big hug to you both, Douglas & Chrissie.

    big hug.jpg


    If there is one good thing about your prolonged hospital stay, it's that you have the wonderful Dina for company and support.

    Hope you get sorted today, Douglas.

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

    Comment


      #3
      Hope it gets sorted without the effigies and pins Douglas and Christine;

      Thanks Dina for your support to others.

      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


        #4
        Hi Douglas and Chrissie.

        Thinking of you and sending hugs.

        Thanks for the heads up Dina.

        Doug

        Comment


          #5
          Now back home,,

          Comment


            #6
            Hi Douglas,

            Pleased to hear that you are back home although poor Dina will surely miss you both.

            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


              #7
              Great news Douglas.

              (now to free the Wythenshawe One )

              Best wishes to you and Chrissie.

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

              Comment


                #8
                Originally posted by Ellie View Post
                Great news Douglas.

                (now to free the Wythenshawe One )

                Best wishes to you and Chrissie.

                Love Ellie.
                Ooh, I rather like the idea of a campaign for the Wythenshawe One!
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #9
                  Originally posted by Dis1960 View Post
                  Now back home,,
                  Douglas and Chrissie,

                  I can't tell you how thrilled I am that you got home today. However, it would be dead simple to tell you how miffed and how jealous I am! Ha ha ha. All I can think is that the staff like me so much they can't bear to let me go! Anyway, I can't go home until I find someone suitable to take over as chair person of the Tom's Bottom Appreciation Society!

                  I was so sad for you both when I realised what had happened and I was worried that, being the weekend, nothing would be done until Monday !

                  I hope you received the message I sent via Apollo.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #10
                    Originally posted by Terry View Post
                    Hope it gets sorted without the effigies and pins Douglas and Christine;

                    Thanks Dina for your support to others.

                    Love Terry
                    Thanks, Terry. It's my pleasure to hunt forum members down, or even MNDers who are not yet members, and drive them bonkers! No, I just remember how alone I felt when I was in hospital just after diagnosis.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #11
                      Originally posted by Ellie View Post
                      Great news Douglas.

                      (now to free the Wythenshawe One )

                      Best wishes to you and Chrissie.

                      Love Ellie.
                      Hi Ellie,

                      Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        #12
                        Originally posted by Gillette View Post
                        Hi Ellie,

                        Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!
                        It might be too late to put that campaign on hold Dina!

                        Apparently TC phoned the Fire Brigade, urgently requesting them to rescue a damsel called Dina aka 'The Wynthenshawe One' (also, famously known as Gillette!).

                        The firemen must have realised that, as you are 'the best a man can get', they shouldn't delay rescuing you - and so don't be surprised if a fireman's ladder (and possibly his hose?) appears at your window very soon! LOL

                        Love Kayleigh x
                        Last edited by Kayleigh; 13 October 2019, 12:36.

                        Comment


                          #13
                          Originally posted by Gillette View Post
                          Thanks, Terry. It's my pleasure to hunt forum members down, or even MNDers who are not yet members, and drive them bonkers! No, I just remember how alone I felt when I was in hospital just after diagnosis.
                          Hi Dina;

                          I try to do the same at meeting and hospital appointments. So often waiting rooms are quite places, sometimes not if I'm in attendance.

                          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


                            #14
                            Dina, I am heartened that you can at least get a day pass out of the hospital, but disheartened that the firemen didn't follow through on their rescue mission.....

                            The more I think of how your CHC application is being handled and how delay after delay and the uncertainty is affecting you, the angrier I get.

                            What happened to the NHS's stated "CCGs will normally make a decision about eligibility for NHS continuing healthcare within 28 days of getting a completed checklist or request for a full assessment, unless there are circumstances beyond its control" ?? And that's not even the timeframe for a Fast Track application, they (allegedly) can be processed in 48hrs if necessary.

                            If I were a cynic, I'd say they're trying to wear you down and doing a fine job of it too by all accounts

                            Have you the fight in you to complain to your CCG? Or have you an advocate who can act on your behalf? A well constructed formal complaint, not a moan, may get the ball rolling?

                            IDK how far you want to go with getting a decision within a reasonable timeframe, or if at all in case you rock the boat and they somehow manage to put your file to the back of the pile, which would be reprehensible. You could involve your MP - they may need you vote soon

                            Hope you continue getting the odd day out and can use the HCPs given you're in hospital. For example, the OT should assess your wheelchair needs and provide one which mitigates any pain it causes - they have an explicit duty of care to you.

                            And what about your PC access - can they provide anything or can AT / AAT visit you as an inpatient?

                            If necessary, involve PALS (again?) and MND Connect?

                            It's simply not good enough and the CCG should not be allowed to treat you as they are.

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

                            Comment


                              #15
                              Oh, Kayleigh, you did make me chuckle! Unfortunately nothing and no-one appeared at my window! Another of life's disappointments!

                              That's a kind thing to do, Terry. I can't do that: I might manage to talk to someone sitting next to me, but that's all.

                              Ellie, thank you for your anger on my behalf. At the moment, I've lost all my fight. I can't cope with talking about it, typing about it and definitely not thinking about it but my son has agreed to do something.

                              My MND is worsening noticeably every day. My life is literally being wasted in here, despite the best efforts of the staff - and they are being tremendously supportive.
                              Last edited by Gillette; 13 October 2019, 18:14. Reason: Too honest
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment

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