Be Mine by Rishard Ford

from Good Reads: [with] "Be Mine" Richard Ford has crafted an ambitious, incisive, and singular view of American life as lived. Unconstrained, astute, provocative, often laugh-out-loud funny, Frank Bascombe is once more our guide to the great American midway.

Now in the twilight of life, a man who has occupied many colorful lives--sportswriter, father, husband, ex-husband, friend, real estate agent--Bascombe finds himself in the most sorrowing role of all: caregiver to his son, Paul, diagnosed with ALS. On a shared winter odyssey to Mount Rushmore, Frank, in typical Bascombe fashion, faces down the mortality that is assured each of us, and in doing so confronts what happiness might signify at the end of days.

In this memorable novel, Richard Ford puts on displays the prose, wit, and intelligence that make him one of our most acclaimed living writers. Be Mine is a profound, funny, poignant love letter to our beleaguered world."

  From a  medical point of view, this book is a picture of a family dealing with ALS.  Bascom finds himself as care giver to his son. Most of the book takes place at the Mayo Clinic and there are many memorable scenes in and around Rochester, MN..  Ford, I believe, was a patient there when he was being treated for prostate cancer.  I thoroughly enjoyed this book and learned a bit about care giving from it.

Spy of the First Person (2017)

This  Final Work by Sam Shepard Reveals His Struggle With Lou Gehrig’s Disease

Shepard explored his condition [ALS] through his writing — in vivid, precise prose that transformed his worsening symptoms into something akin to poetry.  It is an unvarnished, intimate portrait of a man facing the end of his life, as he reflects on his past and observes how his own body has betrayed him.

When Shepard began working on “Spy of the First Person” in early 2016, he could still write by hand. But a few months later, as his illness worsened, that became impossible. So his daughter, Hannah, bought him a recorder, and would set it up by him and leave him to dictate in the garden of his home in Kentucky.

Sam Shepard, NY Times Obit.

ALS Researcher Dies of ALS

Dr. Richard K. Olney, a leading physician and pioneer in clinical research on amyotrophic lateral sclerosis, died of the disease on Jan. 27, 2012 at his home in Corte Madera, Calif. He was 64.

This is an important obit of a researcher/patient with ALS. It's quite ironic and one would hope that some of his writings on the subject are available.

NY Times Obituary.

San Francisco Chronicle article about Dr. Olney (April 2011)

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The Killer Within (2011)

(Published January 2011)  
Philip Carlo's investigative achievements are remarkable, but what wasn't known to his readers is that, while working on The Ice Man, he learned he had amyotrophic lateral sclerosis (ALS), a terminal illness that causes all of the muscles in the body to atrophy over time. Suddenly, after years of penetrating the minds of killers, Carlo found himself being pursued by the grim reaper. But rather than lying down and succumbing to the disease, Carlo continued to work, and his books are still being published, to both critical and commercial acclaim.

In The Killer Within, Carlo documents his difficult experiences with ALS and explains how he has managed to continue to write prodigiously in the face of adversity. The Killer Within is a gripping, suspenseful page turner that pulls the reader into the netherworld of Mafia bosses, Mafia hit men and serial killers, as well as the hard realities of dealing with a fatal disease.

Mr. Carlo died in November 2010:  NY Times Obit.

His Brother’s Keeper: Jonathon Wiener 2004

From Jonathan Weiner, Pulitzer Prize-winning author of The Beak of the Finch, comes His Brother's Keeper -- the story of a young entrepreneur who gambles on the risky science of gene therapy to try to save his brother's life.
Stephen Heywood was twenty-nine years old when he learned that he was dying of ALS -- Lou Gehrig's disease. Almost overnight his older brother, Jamie, turned himself into a genetic engineer in a quixotic race to cure the incurable. His Brother's Keeper is a powerful account of their story, as they travel together to the edge of medicine.
The book brings home for all of us the hopes and fears of the new biology. In this dramatic and suspenseful narrative, Jonathan Weiner gives us a remarkable portrait of science and medicine today. We learn about gene therapy, stem cells, brain vaccines, and other novel treatments for such nerve-death diseases as ALS, Alzheimer's, and Parkinson's -- diseases that afflict millions, and touch the lives of many more.
It turns out that the author has a personal stake in the story as well. When he met the Heywood brothers, his own mother was dying of a rare nerve-death disease. The Heywoods' gene therapist offered to try to save her, too.

"The Heywoods' story taught me many things about the nature of healing in the new millennium," Weiner writes. "They also taught me about what has not changed since the time of the ancients and may never change as long as there are human beings -- about what Lucretius calls ‘the ever-living wound of love.'
"The Heywoods mean the whole story to me now: an allegory from the edge of medicine. A story to make us ask ourselves questions that we have to ask but do not want to ask. How much of life can we engineer? How much is permitted us?
"What would you do to save your brother's life?"

This has been made into a documentary: So Much So Fast