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    Harsh reality

    MND/ASL is a incurable terminal illness. It kills what it touches. If they came up with a cure today it would be too late for any of us. Unless you can you fancy a zombie apocalypse! So we won't see 100? My Grandfather did and he was abjectly miserable saying all his friends were dead and that he had nothing in common with the world he was living in. Personally I'm glad I'm missing it. Queen had it right when they sang "Who wants to live forever" I apologise if this upsets anyone but false hope is no hope.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Never wanted to live to 100 -I would of liked to live long enough to enjoy retirement however that's probably not going to be my reality. A cure today would be just that...a cure. Who knows....what If the cure also enabled restoration of wasted muscle. We can dream....I'm a glass half full type....when possible.
    Pre diagnosis I would say I love my life...so many things bring me joy....now it's harder to think of the joy....but I do...I'm saddened to think of leaving but realistic about possibilities. On a bad day I think of all the many younger ppl with MND & I'm grateful I got this far before it hit. My children grown my grandchildren I know them all. That's not true for all....sadly.

    It ain't over til the fat lady sings (& I'm no longer fat & can no longer sing) so we live in hopeπŸ™
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      But that's just it, restoration of dead tissue has morbid ramifications. I have a positive mental attitude, I have to or I would have ended it by now. 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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        #4
        LindaB
        Hi like you I am glad I almost reached retirement and our kids are capable and adults.The 7 grandchildren live local and bring me lots of pleasure.
        I try not to waste to much time thinking about what might have been if I hadn’t got MND.

        Each day is a bonus isnt it...hope I continue to feel that way but realistic enough to know physical frailty will get worse.My Catholic faith keeps me strong too and I have support from parishioners and priest.

        So for today ..just awaiting palliative nurse to arrive.She comes regularly and it’s a great comfort she understands my views / needs for end of life care .She also checks how my husband is coping and feeling.

        Respiratory nurse coming Monday to talk about managing breathing as I can’t tolerate the NIV.

        Later on we have a friend coming for a visit.Might go out for a wheelchair push if rain stays away.
        Wishing you all another good day
        Best wishes
        Mary

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          #5
          I only posted because I am a little tired of all the talk about amazing treatments and cures. Sorry for bringing my bad day online. 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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            #6
            matthew55 no sorrys required here this is the space for sharing...we all have good, not so good and downright awful days. I'm sorry your day isn't so good or maybe even awful. πŸ€—

            ​​​​​I only know you from your posts you certainly do have a positive mental attitude...& your humour shine through. My view for what it's worth....moving to a suitable new home will give you such a boost. You overcome obstacles daily....and still will but with a little more support. Big hug πŸ€—
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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              #7
              Mary C I think faith and whatever that means for individuals is such a big deal. Sounds like you have a handle on it.
              I'm getting there...but a long way to go.
              Enjoy your day with your friend 😘
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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