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    #16
    Thanks Mary x

    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

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      #17
      Yes Matt, hospitals can be very dangerous for us that need specialist care. You definitely need a carer now.

      We will all benefit from from my care app later this year.
      Copyright Graham

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        #18
        Like I said get something in writing so you have as much about your condition as possible. Saves time. Put your name and address, nhs number then it will help then find your notes. Save a lot of time if you keep it up to date. Name of someone who knows you. If you hand that over you can make a good argument if something goes wrong.
        when i can think of something profound i will update this.

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          #19
          Originally posted by denise View Post
          Like I said get something in writing so you have as much about your condition as possible. Saves time. Put your name and address, nhs number then it will help then find your notes. Save a lot of time if you keep it up to date. Name of someone who knows you. If you hand that over you can make a good argument if something goes wrong.
          Good idea x
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

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            #20
            Pleased you finally got sorted Matthew, but not a nice experience. It’s fair to say most Doctors and health professionals don’t come into contact with many, if any, MND patients.

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              #21
              No to carers. I'm still mobile and as long as I am I shall be independent. πŸ‘x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #22
                Good stuff Matt! There are some cracking carers about that are a blast. It would be a shame to leave it too late when you are desperate for any. xx

                Hmmm Denise! Have you ever been looking at my app?? Love and hugs xxxx
                Copyright Graham

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                  #23
                  No. Where is it? Graham. It must be well hidden!

                  love Denise xxx
                  when i can think of something profound i will update this.

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                    #24
                    Steady on my little tiger with long teeth that loves to cuddle, artificial intelligence code doesn't write itself you know! Love and hugs xxxx
                    Copyright Graham

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                      #25
                      Come on Graham. About time we saw your creation. 🐯
                      when i can think of something profound i will update this.

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                        #26
                        Ohh Denise! Do you want me to rush my Masterpiece?? I am just arranging the smile on my Mona Lisa. That in itself will take a couple of months! I am very excited for you to see it on the other hand. Love and hugs xxxx
                        Copyright Graham

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                          #27
                          graham ive never quite figured out if the mona lisa was actually smiling.she's probably just thinking that graham just takes soooo long.

                          come on hurry up we cant wait to see this work of art. youve been hiding it for much too long it needs to make an appearance.

                          love as always
                          denise

                          when i can think of something profound i will update this.

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                            #28
                            Some of the complexity is the logging in bit using Entity Framework but that was just the start of it! It really is a monster but when done, the health system will be better the world over. Love and hugs xxxx
                            Copyright Graham

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                              #29
                              good heavens. i had a look but its way above my head.

                              love and lots of hugs
                              denise xxxxxxx
                              when i can think of something profound i will update this.

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                                #30
                                Yes, me too but I have all of the time in the world and I have it working. Thing is that I can make it work for us. I have devised a system where carers or family or friends may be invited to join the app and may be allowed privileged access to various parts of the app. Is this how you see it working, as you were bob-on beforehand? Love and hugs xxxx
                                Copyright Graham

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