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Hello I’m Douglas

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    Everything crossed for you Douglas,

    Good Luck,
    Love Debbie x

    Comment


      All the best Douglas;

      Been wanting a update for ages.

      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


        Originally posted by Dis1960 View Post
        I’m 58 and this year have had a few trips/falls; lost a lot of weight and saw my speech dwindle to almost unintelligible.

        The GP thought either a stroke or MND so signed me off work ( I have been a software engineer) from the 18th September for six weeks

        I was given the clinical diagnosis of MND at Salford Royal last week and am waiting for the MRI scan results.

        I really feel sorry for my wife In all this xxx
        hi, Douglas. I'm the same, I'm scared for my wife when this is over. I am totally reliant on her for my every need, its not fair that her reward for all her hard work will be to be a widow. all we can do for our wives is be strong, be positive, last as long as we possibly can. whilst devastated I relish the fight, MND will drag me screaming and fighting from this world.

        I too attend Salford Royal (Dr Ealing) its the best we could hope for.


        I wish you both the best x

        Comment


          Well that was an interesting day- the plan was to leave at 5pm

          That was changed to 3pm so patient transport transferred me by stretcher at 3 got to the house 330 no carers because they hadn’t been told of the change of plans. Ok patient transport got in and carried all the nippy, cough assist, tubes, masks, prescriptions and a box of Fortisip inside then announced they couldn’t get the stretcher in the front and couldn’t open the kitchen door. So waited in the ambulance on the stretcher for another crew to help transfer to a chair. They came at 5 and i was finally inside at 520. Then we couldn’t find the Fortisip

          Comment


            Hope you slept reasonably well after that ill-planned, traumatic day Douglas - you must have been exhausted

            So glad you're out of hospital... There's no place like home, as the saying goes.

            (I daren't mention the feeding tube )

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

            Comment


              It's good to hear that you are home Douglas. I expect you could have done with some of that Fortsip after having to wait in the ambulance for so long!

              I hope you are enjoying your home comforts and hopefully everything will go smoothly with the carers from now on.

              .... and yippee - no more bland hospital food!

              Love and best wishes to you and your wife,

              Kayleigh x

              Comment


                Glad you are finally home Douglas. What a day you have had.
                Best wishes Sheila.

                Comment


                  So glad that you are finally home. Take care x

                  Comment


                    Hope you have the basic things sorted at home Douglas;

                    It's must be so hard for you both to be home for a few days till you get things in place.

                    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


                      Hi Douglas,

                      I'm pleased for you that you are finally home. I hope everything is slipping into place for you.

                      All the best,
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        Hi Douglas,

                        So glad you're home .. Theres no where like it . I hope everything is in place for you and that you're both managing.

                        Love Debbie x

                        Comment


                          Hi Douglas,

                          How are things with you. Hopefully better, we would like to know.

                          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


                            Hi Douglas,

                            I hope you are enjoying your home comforts and everything is going smoothly with the carers.

                            Love and best wishes to you and your wife,
                            Kayleigh x

                            Comment


                              chrissie here

                              Hi, everyone
                              I am Douglas' wife/carer (although it appears not a particularly great example of the latter&#128558. Douglas came back into Wythenshawe hospital on Friday evening - his CO2 readings were apparently too high to be measured and he has an infection in one of his lungs.

                              He was stabilised in the Resus ward and has now been transferred back to the Ventilation Unit, oddly into the very same bed he was in before. The readings are still higher than they like but are coming down and he is on anti biotics for the infection. We don't know how long he will be in for.

                              The doctor seems to be saying that if he relapses, they will just keep him 'comfortable'😥.

                              As you might be aware, Doug was determined not to return to hospital. But I have no Power of Attorney and he seemed to be completely unresponsive so I had no Power to stop them taking him - but the worst thing to me was when he indicated this morning that he had been completely aware of what was going on but was completely unable to communicate😢😢😢

                              Comment


                                Sorry to hear that Douglas is back in hospital, Chrissie - it's very distressing for you to hear the "make him comfortable" phrase...

                                Hopefully those antibiotics will do the job. Is he linked to a hospice? They might take him and treat his current infection - they're much different places to hospitals (in a good way!) - and speak to you both about symptom management & future care.

                                When you say Doug was apparently unresponsive when the paramedics were at your house, but was aware what was going on; do you think he was just 'zonked' from the infection / CO2 retention? I presume he would normally be able to move his head (yes/no) to indicate he didn't want to leave home - mind you, that'd need to have been followed by a chat with them which maybe would've been difficult.

                                I am sorry to bring this up but have you and he had a conversation about ongoing treatment?

                                You're doing a great job caring for Douglas, in very difficult and challenging circumstances - you're an unsung hero.

                                Please give Douglas my best.

                                Big hug to you.

                                Love Ellie.
                                Last edited by Ellie; 15 September 2019, 14:02.
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                                Comment

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