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    #31
    How about guns and roses knocking on heaven's door! ๐Ÿ˜Šx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #32
      Ah, but would you get in? Iโ€™m sure I wouldnโ€™t x๐Ÿคญ

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        #33
        I live and die in hope ๐Ÿ˜Šx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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          #34
          I have decided to have a Direct Cremation. No service or party. This way some of my life insurance can be left to MNDA. My ashes, along with my dog Jessie are mostly thrown where my daughter wants to. Although some of my ashes are to be put in a firework rocket so I can light up the sky for one last time.

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            #35
            Oh Steve , that sounds beautiful. I havenโ€™t decided on the detail of mine yet but Iโ€™m thinking about it. Iโ€™ve never liked a fuss so the Direct Cremation is worth thinking about. Iโ€™m considering making a tissue donation to MND research, so that could work quite well. ๐Ÿค” x

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              #36
              Recently seen that some European country (can't remember which0 is just developing a coffin made of mushroom/funghi??? Not on sale yet
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #37
                I'm all signed up for brain and spinal cord donation for MND research - just hope Covid doesn't kill me as all Covid deaths where I live are automatically Coroner cases and not suitable for donations ๐Ÿ˜ช
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

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                  #38
                  When I retired, a few years ago, I started working as a volunteer on a local preserved steam railway. This illness unfortunately cut that a bit short, but they do have a service where they will put your ashes into the firebox of the steam loco while it is running down the line. They then get ejected out of the chimney with the steam and distributed along the track. I'm hoping my wife will do this with mine. Even better if it's the loco I helped to restore (in a very small way).
                  Each day is made easier with a bit of humour.

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                    #39
                    Oh Gary that sounds great. For a horrible moment I thought it would have cremated you as well. I had a horrible picture in my head. What a way to go though. Great plan I'm sure your wife will make it happen xx
                    when i can think of something profound i will update this.

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                      #40
                      I have often thought about being buried at sea and I have a long list of people I want to carry my coffin ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

                      Richard
                      Richard

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