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    Hello

    Good morning to anyone who like me are alone. Another precious day lies ahead but don't panic just take it in bite size pieces. Oh and I am always open for a chat. Stay Strong ๐Ÿ˜Šx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    It's wet and horrible here.
    The doctor said yesterday we need to think about leaving our house, as it's unsuitable, and the village. We need to make plans. I've been saying this for ages but there you go.
    is it me but it really doesn't feel like Christmas. I don't even have mince pies or sausage rolls. Daft thing is I'm not keen on pastry.
    I feel Christmas will just be another day.
    ๐Ÿ˜•
    when i can think of something profound i will update this.

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      #3
      Havenโ€™t posted for a while so here goes.
      I am off to London hospital for respiratory review today with my bulbar mnd. Itโ€™s such an effort now. Wheel chair required, however I can walk short distances. Train is out the question, so going in style by taxi. I shall be exhausted by the end of the day.
      nick

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        #4
        I hope everything goes well. Do you have far to travel?
        when i can think of something profound i will update this.

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          #5
          Good morning Matthew.

          I hope you will purรฉe some nice food to have at Christmas. I will certainly send you greetings on the day.

          Denise Iโ€™m saddened that you are not happy where you are but remember that many people would be envious of you in Portugal. Make plans to return to the UK next year which I hope for us all will be better than 2020.

          Good luck Nick with your hospital review.

          Barry
          Iโ€™m going to do this even if it kills me!

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            #6
            I am so worried about Stephen and his illness and my family being so far away and having no help over rides being here. I wake up some nights terrified. I just want to be home. The whole planning thing must be bad enough being in the UK but the whole getting back home when you've moved away to start a new life it's just hard to know where to start. Stephen just turns off. It's only when you leave what you've known that you realise what you've lost.
            when i can think of something profound i will update this.

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              #7
              We never appreciate what we have until it's gone. ๐Ÿ˜žx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                #8
                Oh Matthew I agree. Some things are so basic that we don't realise until it's too late.
                we have a door in the house that shrinks in the summer so it pops open but come winter it expands so it's a real bugger to shut. Stephen thinks if he really bangs it's shut then that will solve the problem. He's just slammed it 5 times so it's obviously not so. I've told him if he keeps that up the door and the frame will come apart and my carpentry skills are non existent.
                I would like Harry potter's wand for Christmas. ๐Ÿ˜
                when i can think of something profound i will update this.

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                  #9
                  Denise I feel for you, all the things to sort out and then a house sale and a move on top ..........will it be harder to sell post brexit do you think?
                  Husband Albert diagnosed PMA Feb 21

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                    #10
                    Selling something here will be a miracle. If we wait for that I think we will both be dead and gone
                    when i can think of something profound i will update this.

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                      #11
                      Hi All,

                      Just got back from central London, about 70 mile round trip, but with London traffic itโ€™s two hours each way. Thankyou for your good wishes. I have got yet another machine now. This one for cough assist. Weโ€™re running out of plug sockets!

                      Denise, sorry to hear of your situation, I hope things get better soon for you.

                      Nick

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                        #12
                        Stephen had a respiratory review yesterday. Told if he needed it for longer than the night time period he will need a bigger machine. For some reason I pictured Battersea power station. What was the record album that had Battersea power station and a elephant or something on the cover? Ok anyone remember records? ๐Ÿค”
                        when i can think of something profound i will update this.

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                          #13
                          Albert says its by Pink Floyd and called animals!
                          Husband Albert diagnosed PMA Feb 21

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                            #14
                            I was worried it was all in my head and not real ๐Ÿคค
                            when i can think of something profound i will update this.

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                              #15
                              Here's a question I'd like to ask. Mnd, and other things I suppose, can come from a faulty gene. So what causes a faulty gene?
                              Could this virus cause faulty genes or am I going down the wrong track? ๐Ÿค”
                              when i can think of something profound i will update this.

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