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Living with MND/ASL

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    Living with MND/ASL

    Try seeing living with MND/ASL as a marathon. At the start everyone is in a group and soon certain people move out in front and the distance seems impossibility far away. Inneveitably in the later stages runners speed up to improve their position and at the end of a race those that can sprint for the finishing line. Got it? So my question becomes is the current speed of my symptoms increasing a move for position or a last, desperate, rush to the line? πŸ€”πŸ˜€πŸ§πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    All that I can say Mathew is that I agree MND is certainly a Marathon, but we all don’t choose our diagnosis as you know. But the speed? I wouldn’t wish to increase speed, but some may choose to. Have I missed this point? Love Lynne 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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      #3
      I think Matthew has come up with a good analogy. I suppose its dependant on the runner and any set backs on the way and how you perceive the finish line. πŸ™

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        #4
        The runners do but we don't that's where we collide. πŸ˜€πŸ˜πŸ€—πŸ˜˜πŸ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          Matthew’s question poses a thought provoking response. Usually marathons start in one place and end in another with a few twists and turns along the way. Not dissimilar to MND, although the end is not welcome, whereas the runner sees the finishing line as an achievement.
          I’m going to do this even if it kills me!

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            #6
            Marathons have a pre-determined distance though, I prefer running like Forrest Gump πŸ˜‚πŸ˜‚ xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

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              #7
              It all sounds very energetic. I'd just like to sit on the grass verge with my picnic and watch everyone else x πŸ˜‚

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                #8
                Well, support from the sideline is vital Debbie πŸ‘πŸ˜˜
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

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                  #9
                  Originally posted by Deb View Post
                  It all sounds very energetic. I'd just like to sit on the grass verge with my picnic and watch everyone else x πŸ˜‚
                  Me too Deb πŸ˜‚
                  Janette x

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                    #10
                    Originally posted by Ellie View Post
                    Marathons have a pre-determined distance though, I prefer running like Forrest Gump πŸ˜‚πŸ˜‚ xx
                    I have you sussed Ellie. You’re waiting for the box of chocolates x.
                    I’m going to do this even if it kills me!

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