December 12, 2020 at 6:51 pm #17160Kathy stitzParticipant
Does anyone have any recommendations for books to read that either have information about ALS or are people’s personal stories about ALS? Thank you in advance!
December 14, 2020 at 4:08 pm #17175Dagmar MunnKeymaster
Well, since no one has stepped forward yet… I’ll jump in with my book. 🙂
I wrote “Align, Lengthen & Strengthen Your Resilience; While Living with ALS” in 2015. It is about my first year (I was diagnosed in 2010) of living with ALS.
Through numerous personal and humorous anecdotes as well as drawing on my background in wellness I share practical advice and tips for creating a resilient life. It’s a guide for not only patients, but for caregivers, family, and friends as well.
It is FREE and can be downloaded as a PDF. This is my gift to the ALS community and I encourage you to share it with others!
website: ALS and Wellness Blog
December 14, 2020 at 6:52 pm #17176tomdParticipant
Tuesdays with Morrie is a memoir by author Mitch Albom about his visits to his former sociology professor Morrie Schwartz as Schwartz gradually dies of ALS.
December 15, 2020 at 1:04 pm #17177Jean-Pierre Le RouzicParticipant
Shameless self promotion: In 2019 I wrote a book about the state of ALS research.
I am not a MD, I am a R&D engineer in Telecoms, but for personal reasons I feel too little had been done in ALS research.
Sadly not much interesting occurred in ALS research in 2020.
It is a long book with many references but I will make an update probably at the end of January 21, after the publication of Arimoclomol results.
The new book will be updated with recent clinical trial results. It will be easier to read, both because sentences will be simplified (English is not my native tongue), but also because I was a bit angry at the time, now hopefully I could make a better job.
If you are still interested here the link for the current book, but you should wait until it is updated.
December 15, 2020 at 3:13 pm #17187Jim KneppParticipant
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.
My favorite passage: or me, it’s not the death part that I don’t want to deal with. I don’t want to deal with the process of getting there.
ROWING WITHOUT OARS; a Memoir of Living and Dying, by Ulla-Carin Lindquist
A Swedish broadcaster’s journey with ALS.
My favorite passage: I am going to die of ALS, if nothing unpredictable happens. There are two roads I can take. One is to lie down, be bitter and wait. The other is to make something worthwhile of the unfortunate. See it in a positive light, however banal that sounds. My road is the second. I have to live in the immediate present. There is no bright future for me. But there is a bright present. Children live like this. Only for the present. Nothing coming afterwards. Therefore I laugh like a child. Uncontrollably. The whole of my adult life I have thought, it will be all right in the end. I have to do this first, then it will be all right. But this way of thinking is no longer possible. The strange thing is that nowadays, when I am terminally ill, I feel moments of great joy, such as I have hardly ever felt before. Happiness has never been a constant for me, but now it is becoming one. That is why I laugh. And if it has anything to do with bulbar paralysis, then it is a blessing that comes with ALS.
BEAUTIFUL BATTLEFIELDS, by Pastor Bo Sterns
A Minister resorts to the Bible when her Husband is diagnosed with ALS.
My favorite passage: No, I didn’t earn His grace yesterday. Or the day before that. Or ever. Grace is free. Love is undeserved. And while I know God loves us on the days when we try hard to get it right, I think He’s also quite fond of us on the days when we know we’ll never get it right.
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.
SPY OF THE FIRST PERSON, by Sam Shepard
The award winning actor, author, and playwright’s journey with ALS.
I read it, but don’t recommend it.
December 15, 2020 at 3:49 pm #17188BillParticipant
I find daily interface with current pALS on a sharing and support site much more powerful than a book. I hear daily stories as pALS experience life, doctors visits, treatments, trials, health crisis, caretaker issues, how they cope with progressing ALS. Even hear them talk of decisions on end of life. It’s been the most important learning experience to me. Example is I just posted about a fall and stitches I just had and a number of my online pALS friends offered comments and support.
There is life to live in spite of our ALS and no one better to hear it from than the PALS living it. At lot of good books were mentioned in this forum but living with ALS is a moving target. By the way I am an avid reader going through a couple of books a week. Just don’t read ALS books , I more just experience it through friends and myself.
December 16, 2020 at 9:22 am #17194Marianne OpillaParticipant
I recommend “I remember running: The year I got everything I ever wanted–and ALS” by Darcy Wakefield.
I related because I was a marathon runner before ALS.
If you like ALS movies, “You’re Not You” with Hilary Swank. I got this on AmazonPrime.
Of course, both of these have a sad ending.
December 17, 2020 at 11:24 pm #17212Ilana SchatzParticipant
A friend recommended “Navigating Life with ALS” by Mark Bromberg, MD and Diane Banks Bromberg. It’s a good synthesis of a medical perspective (he’s a neurologist) and helpful everyday life tips (she was the caregiver for her mother who had ALS). I found it very helpful and wished I’d known about it closer to my diagnosis.
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