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    #31
    Hi Terry,

    Great news that you are back home with the correct equipment. I hope you don’t have to use it but it must be comforting to know it’s there.

    Graham,
    You must be made of strong stuff and I’m happy that you pulled through. I believe we are all going to have many challenges ahead and I am pleased we have this forum to keep in touch as the prospect of isolation is not one I relish.

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

    Comment


      #32
      Hi barry,

      the type of mnd you have is crucial. I have upper neurone disease or brain-rot, which means the lower motor neurones can still do their stuff. my sneezes are legendary and my laptop often goes flying along with the snot. sorry girls but that is mnd.

      20 odd years of squash has set me in good stead. people said I breathed through my arse playing squash which has helped now.

      yes, it won't be easy and the dire state of the nhs doesn't help.

      I suggest getting in antibiotics beforehand and take as soon as first cough and temperature.

      love
      Copyright Graham

      Comment


        #33
        Hi Graham,

        Sorry to hear that you have been so unwell. Like you I can coat things ten feet away when I sneeze or cough.

        Pleased I have the nippy.
        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


          #34
          Good afternoon all

          Sorry to hear you not been well Graham but glad you've come through it if indeed you have.

          And Terry glad to see you're keeping well and back home

          My added wrinkle is of course we are trying to move house at the moment - all we need is for us to be infected at the point where we complete the purchase or indeed by that time, perhaps eight weeks hence, if we have a transport lockdown.

          A friend and colleague who I was talking to this about said she was hoping that the government will push a big red pause button on everything but I reckon it's going to be a lot more granular than that with income opportunities for some and some incurring quite substantial costs
          Warmly


          Andy

          ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
          MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

          "Things turn out the best for people who make the best of the way things turn out"

          Comment


            #35
            CC, there is a free flu jab for most people in UK. Essential health workers, vulnerable people, the over 60s all get invited. Others can request it from GP and get free or pay at a pharmacy. There is nothing like this for Covid19 so it is a different ball game altogether and an element of choice or ignorance where people don’t get a flu jab every year and go on to suffer then die of it. Me and my husband have been getting free flu jabs for about 5 years. Now we have been self isolating and will continue this until the risk has passed . We are both vulnerable, my MND and his age.
            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


              #36
              I’m glad to hear that you pulled through Graham. The Government is talking about sending everybody a home testing kit to see who has already had Covid19 so that the scientists who are analysing this pandemic can get a clear picture of where the virus has been. 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


                #37
                Hi Lynne,

                Sending everyone a testing kit?

                My wife runs the bowel cancer screening programme for one of the central London hospitals covering most of south London and she tells war stories about the challenges they have because everybody over 55 gets called in for a bowel cancer check of one sort or another. And the take up is quite poor.

                However possibly this is sufficiently high profile to get a good response rate if indeed this is what is planned?
                Warmly


                Andy

                ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
                MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                "Things turn out the best for people who make the best of the way things turn out"

                Comment


                  #38
                  hi lynne,

                  I hope you are keeping well and thanks for your kind words. it is common sense to test for people that have natural immunity, but as most ministers are focusing on appearing on love island, we can dream on. I do feel that I have been totally failed by government but this is nothing new. the massive benefit is my whole care team are through it and my colleague returned to work today feeling much better.

                  hi terry,

                  hope you and the wife are feeling stronger today.

                  love
                  Copyright Graham

                  Comment


                    #39
                    Andy, we both get the bowel cancer screening letter regularly. The Prime Minister and a medical specialist who was speaking with him yesterday (it was on the BBC News). They both talked about their idea to test everybody’s so that they can see how this Covid19 virus is behaved. That will help them in several ways, some research based and also practical. 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


                      #40
                      Hi Lynne;

                      Hope your husband is being careful now.

                      My wife has.

                      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


                        #41
                        https://www.ordnancesurvey.co.uk/new...ement-covid-19
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
                        MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #42
                          Terry, it’s good that your wife is careful. It was hard for me to get my husband’s initial cooperation to self isolate with me. But I got there 10 days ago for him to agree for us both to self isolate. So we’ve stayed home mostly, and gone on short trips in my car. We’ve been doing internet shopping and keeping contact with loved ones in WhatsApp or Skype video calls. But my husband is like a naughty school boy, gone into Asda and Tesco at quiet times. He’s gone into the shop at petrol stations instead of paying at the pump. He told me that he’s trying to get paracetamol for me. That’s either stubbornness or stupidity and I’d be the most vulnerable if he brought the virus home. I’d rather do without paracetamol than get Covid19. Anyway I bought PPF3 face masks (with respirator valves) yesterday and told him that he must not go into any more shops or otherwise have close contact until he is wearing a face mask. They are due to arrive between tomorrow and Monday,

                          I’d searched for available PPF3 masks for a course of weeks. Most companies are out of stock, I saw a pk of 5 reusable PPF3 with respirator valves yesterday for £32.95. These were out of stock also. I then went to eBay and found what looks like the same masks for the exploitative price of £94.99 with £5.99 postage so I bought them despite being thoroughly disgusted about the inflated price. But at least I will have them and buggins will have to use one. I’m getting more forceful about this than I am about anything else because of the importance of complete isolation for all of us. I’ve had enough of feeling that he just doesn’t get it. I don’t care now if he doesn’t get it but insist now that he cooperates. He’s brilliant in keeping me fed and watered. But I like my independence to do my porridge every morning in our microwave and my lunch about half the time.

                          How are you coping?
                          Last edited by Lynne K; 19 March 2020, 19:34.
                          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


                            #43
                            A narrow escape?

                            I may have just had a narrow escape.

                            A little under three weeks ago I visited one of my physios for a final steroid injection for my painful shoulder. This one, thank God, seems to have worked, in that it’s now much more comfortable in most positions.

                            Like most physios she was a picture of health and fitness, together with the physique of a rower.

                            So imagine my shock today to receive an email from her cancelling a follow up appointment because she has “been advised on medical grounds to take a complete break from clinical work for six weeks…due to the severity of my respiratory health”.

                            Doug

                            Comment


                              #44
                              There must be a huge percentage of our population with or has had coronavirus. The BBC/NHS are pulling our leg by suggesting only 3,000 have had it. The true figure must be at least 300,000. People have been flying into this country from China, Iran, Singapore and Korea for months unimpeded.

                              Sadly, we have a country full of 'I'm alright Jack and Jills' and a government that only encourages 'em.
                              Copyright Graham

                              Comment


                                #45
                                Government now wants to shield me and you. Six weeks too late for me but how the heck do you SHIELD people that need close intimate care?? WTF are these highly paid top brains of the country thinking??

                                Self isolating is not a problem for me, as 10 years of austerity have FORCED me and many of us into isolation for the same period. Again, how incredibly insensitive and frankly THICK.
                                Copyright Graham

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