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    • #22018
      Creighton Rider
      Participant

      A few years ago, in the back seat of a Suburban rolling down the highway, some words popped into my head about my journey with ALS. They were lyrics dancing around in my brain, and I even heard a deep country voice singing it. I only got two or three verses figured out in the car, and when I got home I typed them out with my toes, and never finished the rest, as it slid further and further down my to-do list. About a month ago, my ‘music therapist ‘ (yeah, it’s a thing) asked if had any poetry that I would like to put to music. I said “no, but there’s a song I’d like to finish”. So she made me commit to a deadline. That lit a fire under my butt, and I finished the lyrics, dusted off my GarageBand skills, wrote the music, and coaxed my brother-in-law to perform it. Next, I learned how to make a lyrics video, and voilá, here it is. Maybe some of you pALS out there feel the same way…

    • #22020
      Len Jax
      Participant

      Creighton,

      Love it! Love it! I think you will be a contender for The Country Music Awards ceremony next year! Your music is a genre I call “Depressingly/Optimistic!” It is based on the acceptance of life as it is, and the realization that life is still good. You are now on my playlist. You nailed it with the lyrics and the warmth of your video! Thank you for making my day!

      Len

    • #22021
      Steve L.
      Participant

      Creighton,

      I lost my dad at his age 89 three years ago. Fortunately for him it was a short passage…only three months from diagnosis until he was at rest.

      I follow postings here nearly every day. Yours is one of the most inspiring I’ve seen in a long, long time. From your typing with your toes to writing this wonderful song, I’m amazed.

      And I’m absolutely amazed by all who are afflicted with this terrible disease. You all are so much stronger people than I can ever hope to be.

      Steve

      • #22031
        Creighton Rider
        Participant

        Thank you Steve.  I’m sorry about your Dad.  It’s a terrible disease indeed.

    • #22024
      Lisa Brown
      Participant

      Creighton, you absolutely nailed our ALS story. Can I please repost on my facebook page?

    • #22026
      John McCormack
      Participant

      Beautiful. I’m crying. I’m glad you finished it. The video is inspiring for people like me just starting our journey. I can still play my guitar but can’t sing anymore so it hit hard on me.

    • #22025
      KarenM
      Participant

      This so beautiful. Thank you for sharing. I’m going to share it with my sister.

    • #22033
      Ellen Garber
      Participant

      Great great song. Lost my husband 3 years ago to ALS, but I know he’d agree with you….figure out what means the most today. You nailed it!

    • #22041
      Pamela J Glover
      Participant

      Thank you, Creighton and brother-in-law. It’s a great story, a great song, and yes the genre is aptly named. Plus its singable snd I can still croak it out with lots of unnatural pauses for deep breathing.

    • #22042
      Pamela J Glover
      Participant

      Thank you, Creighton and brother-in-law. It’s a great story, a great song, and yes the genre is aptly named. Plus its singable snd I can still croak it out with lots of unnatural pauses for deep breathing.

    • #22048
      Amanda
      Keymaster

      What a beautiful piece of music. I was holding back the tears although I’m not sure how I was able to do that. Thank you for sharing. I hope it’s ok that I also shared on my Facebook page too.

      Thank you,
      Amanda

    • #22049
      Amanda
      Keymaster

      What a beautiful piece of music. I was holding back the tears although I’m not sure how I was able to do that. Thank you for sharing. I hope it’s ok that I also shared on my Facebook page too.

      Thank you,
      Amanda

    • #22056
      Kathleen B (Katie)
      Participant

      AWESOME song—music, lyrics, message!  Totally agree with all other opinions also—THANK YOU THANK YOU for doing this for all of our community—a tribute to our caregivers & families also!  I am just about 2 years since diagnosis, yet can completely relate to every word & feeling expressed…
      I do hope it spreads far & wide — although I’m not on FB, I will share it on to family & friends—and check with our MI ALS organization to see if can be part of the upcoming ALS Advocacy Conference (June 14-16).

    • #22061
      Lisa Bonahoom
      Participant

      Thank you for this music!  You did nail it!

    • #22203
      Nick N
      Participant

      Nailed it indeed, Creighton.  Like John I can still play guitar (barely) but can no longer sing.  I am roughly two years in.  I would be grateful and honored to be around in another 12.  Thank you for giving voice to what so many of us are feeling, and for the wonderful photos of what matters most.

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