I’m a 44-year-old guy who’s been living with ALS for 11 years.  Every once in a while, I write about it.  These poems are posted here, for your reading pleasure.  If you happen to have ALS, hope you find these scribbles uplifting.  Thanks for visiting my blog.

Scott Lew



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19 responses to “Welcome

  1. Reese Smith

    welcome. i can’t wait to read some of your poetry!

  2. brooke Miller Stuckey

    I am so proud how strong you are. I hear you and Ann have two beautiful little boys. I love your blog and I should be ashamed to be so needy sometime. You are a wonderful person and I wish you the best of luck. You are a real trooper. You are in my thoughts and prayers. I remember going to see you a few years ago at Glenbrook Highschool and watching your new movie! You are truly amazing. Keep writing it is your passion :)Cathy keeps me posted on your progress and loved visiting you.

  3. Joy Berks

    Scott, you are truly a fine writer and inspiration. Your thoughts and feelings come through loud and clear and they have made it possible for me to better understand some of what you experience on a daily basis. Your inner strength is admirable surely reinforced by your beautiful children, Ann and all the people who love you. Keep up the hard work and the daily battle of surviving in a most difficult situation. Hope to see you again soon.
    Love, Joy

  4. Jodi

    Really touching stuff here- thx for sharing. Brings back a lot of memories.
    – Jodi

  5. Joy

    It’s Joy, Jodi and Gregg’s friend. (Jesse’s mom) Jodi just forwarded your blog link to me and I can’t begin to tell you what a pleasure it is to actually hear you for the first time! I have only known you in your wheelchair unable to speak, but realize what a gift you have in your writing. I will keep checking in on your bloggs as they are so enlightening and tender with your journey. What you have accomplished in the few years I have known you is pretty darn incredible, including having your two beautiful boys that even Jodi and I together have a hard time keeping up with…..God bless Ann! ; )

  6. Kathleen Shanfield

    Hi Scott, and family,
    Andy just forwarded me your blog and I just wanted to say hi from all of us at CART. I love your poems and am so glad to see the pics of you, your lovely wife and BOYS!! I know every day is a new day with ALS, and you are living proof that your voice and spirit are loud and clear in the blogoshere!! Still using headmouse? I will be sure and book mark your site and keep up
    often. Take care, and hope to read more work soon!
    Sincerely, Kathleen, Andy and all of us at CART (Rancho Los Amigos Hospital

    often. P

    Still using

  7. Jodi Bales

    Hi Scott I have been thinking a lot about you and Anabel. I came across your Blog. As always you speak the truth; with heart; honesty and determination.
    Give Anabel my love. Would love to catch up
    Jodi Bales
    ( retired)
    Forbes Norris MDA/ALS Treatment and Research Center

  8. Mom aka Grandma Tammy

    Mom aka Grandma Tammy

    Scott you honor all of us with your incredible strength, perseverance and honesty. Your voice is loud and clear. As said before, you hand out love like it is candy in your pocket.
    Our deepest love is always with you and Ann and the incredibly delicious little boys the two of you have given all of us.

    Much Love,

  9. Michael and Tammy Lew

    Dear Scott,
    We just read your 44th birthday poem and realized for the first time how incredible it is that you have spent 25% of your life and 80% of your married life with ALS. Big numbers are often impressive and worthy of celebration. In this case too, even though you and your beautiful wife, Ann, are in an unfortunate situation you are entitled to celebrate an achievement that would not have been possible without determination, mutual love and a joy of life. You will live at least another 44 in the thoughts and the memories of your two sons, Rocky and Roman, your wife, Ann, your brother, Dan, your parents and the many family members, friends and co-workers who know and love you.
    Happy 44th Birthday.
    Mom and Dad

    • Jodi Bales

      Thank you for reminding me of just how important each passing day becomes in the truth of ones life. Your determination and Ann’s to live, love and be a wonderful family allows me to to be so grateful that I have had the chance to know you. Because for 100 percent of the last ten years I have known 2 people who do not allow ALS to define them.
      I look forward to you’re next poem.
      Jodi Bales

  10. Greg DePaul

    Hi Scott! Greg DePaul here. Remember me? I remember you. So does my buddy Hank Nelken. You gave us our first break in Hollywood.
    Anyways, I’m just saying Hi and I dig your poems. Also, congrats on your movies. You got a lotta strength and it’s impressive. Keep writing and thanks for the poems.
    Greg DePaul

  11. Ken McManus

    Dear Scott,

    Just watched “Living With Lew” and loved it (and I will make it a point to find Bickford Shmeckler’s Cool Ideas). Even happier to hear that you are hanging in and that you and your family are doing well. To families like mine impacted by ALS, your life journey and your spirit are truly inspiring.

    Peace and Blessings,

    Ken McManus

  12. Brie Jasnoch

    I just wanted to tell you how inspiring you are. I came across ‘Living with Lew’ tonight and was so touched after finishing it. I can only imagine the torture that someone like you, that has such a loud personality, goes through at this point in the disease process but please know your story is being heard in ways you may not realize. I’m actually a nurse and care for ALS patients often, I know I’ll be telling them about you from now on. You and your wife have truly touched me.
    God Bless,

  13. Gerri

    I just finished watching “Living with Lew”. All I can say is I admire you so much for facing a difficult prognosis with humor and grace and for continuing to live your life to the fullest extent possible, whatever that looks like in that moment. Your attitude, and your poetry, have inspired me to start living my life, each moment, fully aware and fully appreciative of every blessing that moment has to offer. Thank you.

  14. rogershartmann

    Scott, it’s been ages. I have an incurable brain disorder a la Parkinson’s. I’m so proud of you and will always dig you. Xo

  15. Scott, keep writing. Thanks for the inspiration.

  16. Dear Scott:

    This is your old friend and fellow Cobra Kai warrior, Brian Kramer.

    It has been far too long and if you are still in the Los Angeles area I would very much like the opportunity to come by and say hello to you and your family.

    If anyone would find a way to turn lemons into lemonaide it would be you. That is what you have done so well with this blog, and many of the other things you’ve done.

    I just wanted to let you know that reading your blog has inspired me in many ways, and reminded me how important it is to be presen in every moment and at every turn in life.

    Please e-mail me at bkramer@bjkpc.com and let me know if a visit is possible. I look forward to hearing from you Scott.

    Brian J. Kramer

  17. Mel Florance

    Hi Scott, you do not know me and I do not either. But now you just gave me incredible strength, the strength to believe in life. I always thought I had a horrible life and that nobody could understand, but today I came across your blog, saw the force with which you write all these scenarios, and I realized how I was an idiot, I did not understand. When I saw the documentary by Chetin Chabuk, I cried because it was impossible for me that someone have such a desire for power, and finally live.

    I want to thank you for the hope you have given me and I hope you continue to write again and again.

    A movie fan.

    (Ps: sorry for the mistakes, I’m french).

  18. Anne Berube

    Hi Scott:
    I love reading your poetic updates on this blog. And what a beautiful family you have. You continue to inspire me, old friend!

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