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    • #20245
      Amanda
      Keymaster

      I was searching the internet looking for celebrities’ that have a connection to ALS. I thought if we reached out to them and invited them to participate in ALS Awareness month or Rare Disease Day 2022, we might be able to generate some more publicity.

      In my search I came across this https://www.nytimes.com/2017/12/04/arts/sam-shepard-novel.html. A book written by Sam Shepard during his last few months of living with ALS. Has anyone read this book? What did you think? It’s on my list!

    • #20250
      Dagmar Munn
      Keymaster

      I’m interested in reading his last book too. I read that he couldn’t accept that he had ALS and declined any treatment. Maybe this book; a fictional story about a spy with a debilitating disease, will reveal more.

      In case the NY Times link doesn’t work for you (you’ll need to subscribe to open it), here is a link to Amazon: https://www.amazon.com/Spy-First-Person-Sam-Shepard/dp/0525521569
      And a link to one book reviewer’s thoughts: https://www.courier-journal.com/story/life/books/2017/12/04/spy-first-person-sam-shepards-poignant-goodbye-comes-page/914142001/

      Has anyone read the book yet?

    • #20253

      > In case the NY Times link doesn’t work for you (you’ll need to subscribe to open it)

      If you reload the page then immediately stop the reload you can read the full page.

      There are several alternative means to bypass such paywalls. One for geeks is to drive the website to think that your browser’s request is from a search engine, as most sites under paywall must still authorize search engines to index their content (if they don’t, their precious content can’t be indexed on Google and would loose any value).

    • #20261
      Amanda
      Keymaster

      Thanks Dagmar!!

    • #20265
      Jim Knepp
      Participant

      I’ve read SPY OF THE FIRST PERSON, by Sam Shephard, but didn’t like it – probably too deep for me.

      Some of the other books that I have read: all are available on Amazon.

      ALS: AN ORIENTATION, by Eliot H. Dunsky, MD
      A retired physician’s journey with ALS.
      It is self-published, not professionally edited, nor a best seller, but Dr. Dunsky has made an effort to do something for other PALS. I have read it and, despite its shortfalls (my opinion only), I would recommend it to PALS, CALS, and anyone interested in our common disease. The chapters are short, subject specific (i.e., sitting issues, exercise, etc.), and each chapter is followed by references to web sites for additional information.

      BLITZ YOUR LIFE: Stories from an NFL and ALS Warrior, by Tim Shaw
      An NFL Linebacker’s journey with ALS.

      ROWING WITHOUT OARS; a Memoir of Living and Dying, by Ulla-Carin Lindquist
      A Swedish broadcaster’s journey with ALS.
      BEAUTIFUL BATTLEFIELDS, by Pastor Bo Sterns
      A Minister resorts to the Bible when her Husband is diagnosed with ALS.

      TUESDAYS WITH MORRIE: An Old Man, a Young Man, and Life’s Greatest Lesson, by Mitch Albom
      I read it when it first came out in 1997. Then it was just a best-seller about a sports writer talking to an old man who had this weird disease (ALS). I have read it twice since my diagnosis. Now it has much more meaning.
      Also, see the interviews that Ted Koppel did with Morrie on U-Tube.

      HEAVY: Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS, by Kristin and Todd Neva
      At first I was turned off by the tone of the book: but then I realized that this was their story, not mine. An interesting perspective by a pALS (Todd) and a cALS (Kristin).

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