August 16, 2021 at 8:27 am #20245AmandaKeymaster
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!
August 16, 2021 at 12:54 pm #20250Dagmar MunnKeymaster
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?
August 16, 2021 at 1:32 pm #20253Jean-Pierre Le RouzicParticipant
> 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).
August 17, 2021 at 8:48 am #20261AmandaKeymaster
August 17, 2021 at 5:21 pm #20265Jim KneppParticipant
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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