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    Life Goes On...

    MND is just one of those things that we are meant to just get on with...

    Meanwhile my gall bladder has recently been rearing its ugly head and I have been severely ill with it, looking like a ripe banana and unable to eat, vomiting each time.

    Absolutely necessary to go to hospital a week last Thursday after a week being ill at home.

    The Plan was used. One to one care at all times by my carers.

    Had MRI scan that showed many stones in the bile duct but my breathing was considered too weak for the operation to proceed.

    Fortunately after strong antibiotics, I seem to have passed the problem stone.

    I was reminded that not accepting DNR could lead to broken rib bones and the rest. It is a tricky call.

    Just before I left hospital I got Covid-19.

    Very eventful fortnight.
    Copyright Graham

    #2
    Oh Graham I'm so sorry you are going through all this. One thing after another. I really don't know what to say.

    Love and hugs
    Denise xxx
    when i can think of something profound i will update this.

    Comment


      #3
      Graham how is are your covid symptoms now? Hope no long lasting symptoms re your compromised breathing.

      Also glad your care app came in useful. I have not done my dnr either. I feel I'm not ready yet for a serious decision.

      Glad you are home.
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Oh no Graham, that sounds a really horrible time, so sorry . How are you now? Xx
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

        Comment


          #5
          Graham - so sorry to hear about your trip to hospital and then covid. Sounds awful so I hope you are recovering.

          How did you get carers with you in hospital? Who did you plan that with? Sounds like an absolute must to avoid the humiliating experience I had xx
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

          Comment


            #6
            Hello my princesses.

            The hospital was delighted to hear that I had my own carers. I organised it with my carers prior to the visit.

            My Covid-19 is on its last legs. 7 days now. Things have tasted funny and I have had a thick head.

            Looking forward to buttered scones for tea...

            https://www.youtube.com/watch?v=odt3eXmjy24
            Copyright Graham

            Comment


              #7
              That's just brilliant that your carers could go onto a ward etc. I'm learning everyday. Glad the back of covid is near. Friends said the lack of tasting food lasts a while.
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Oh so that's what you've been doing! Hanging around in bars wearing women's clothing! I believed the hospital bit.

                Cant believe anything anyone says anymore. Anyone got any rotten fruit to throw? ๐Ÿ™„
                when i can think of something profound i will update this.

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                  #9
                  I think having carers with you in hospitable is so helpful. Didn't realise this could be done either. Definitely one to sort out if I really can't avoid the place.

                  Glad Covid has almost gone and you are doing so well. Buttered scones sound lovely. I love butter ๐Ÿ™‚
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    #10
                    Hi Graham, so glad your feeling a bit better. My partner Daren has recently had a 8mm stone removed. He is paralysed from the neck down and 24/7 NIV machine.
                    When he went into hospital he also had sepsis in his kidney and a chest infection.
                    After a drain in his back, antibiotics , a stent and the stone removed through his back under local anaesthetic he has made it home and just got to go back tomorrow to have the stent removed.
                    my warrior x Look after yourself xx ๐Ÿ˜˜

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                      #11
                      Blimey Jo Jo, Daren did well to survive that onslaught. Well done Daren!

                      I do think that they would have operated on me if it was necessary but happily I must have passed the stone.

                      Good luck tomorrow at hospital. Hopefully a quick in and out.
                      Copyright Graham

                      Comment


                        #12
                        Jo jo - Darren sounds like one tough cookie. So glad he is doing well
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                        Comment


                          #13
                          Wow that's a lot to go through for both Graham and Darren (and you Jojo). Hope things improve.

                          Comment


                            #14
                            Graham hope your feeling better now Graham. Youโ€™ve had a bad time๐Ÿ™ sending best wishes xx

                            Comment


                              #15
                              Jojo hope Darren is ok now. How terrible he has had all that to contend with. Bet you were out of your mind
                              . Wishing you both well.take care xx

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