Books about ALS

Choose one of the below books for your next book club. Other books you think should be on the list? Email us to let us know!

Eyes to the Wind, by Ady Barkan

In this inspirational and moving memoir—reminiscent of When Breath Becomes Air and The Bright Hour—activist Ady Barkan explores his life with ALS and how his diagnosis gave him a profound new understanding of his commitment to social justice for all.

ALS Saved My Life…Until it Didn’t, by Dr. Jenni Berebtisky

Most people know life will not necessarily go as they planned. But what do we do when nothing goes as we had hoped? How do we cope with unpredictable changes in body and spirit – changes that require constant shifting of our view of ourself, other people, and the world? Jenni, diagnosed in 2009 with Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease), has been forced to find answers to these questions every day. With the hope of helping others move forward after life-altering events, Jenni shares her story of life with ALS, outlining both the practical and existential changes needed to adapt and thrive. Embodying the idea that courage does not always roar, Jenni reveals the combination of self-reflection, radical acceptance, grit, and social support that have allowed her to remain true to herself while living her life to the fullest.

Caddy for Life: The Bruce Edwards Story, by John Feinstein

The renowned sportswriter and best-selling author of A Good Walk Spoiled provides an inspirational portrait of legendary golf caddy Bruce Edwards, who has been a caddy for Tom Watson since 1973, as he continues the job he loves despite the growing physical limitations of Lou Gehrig’s disease. 300,000 first printing.

Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson, 20th Anniversary Edition, by Mitch Albom

Maybe it was a grandparent, or a teacher, or a colleague. Someone older, patient and wise, who understood you when you were young and searching, helped you see the world as a more profound place, gave you sound advice to help you make your way through it.

Luckiest Man: The Life and Death of Lou Gehrig, by Jonathan Eig

Draws on hundreds of new interviews and previously unpublished letters to present a comprehensive account of the life of the Hall of Fame ballplayer whose career was cut short by the disease now named for him, in a portrait that shares background details about his rivalry with Babe Ruth, the onset of his illness, and the final years of his life. 100,000 first printing.

My Luke and I, by Eleanor Gehrig

Lou Gehrig’s widow recalls their life together, the six years of travel and excitement before the diagnosis of Lou’s amyotrophic lateral sclerosis and the subsequent two years of fears and courage.

Personal Trials: How terminally ill ALS patients took medical treatment into their own hands, by Jef Akst

ALS is fatal. There is no cure. There is only one approved treatment, which extends the life span of ALS patients by an average of only three months. But one group of patients took their treatments into their own hands—fighting not just for their lives, but for a disease community that for years has struggled to be heard. Personal Trials is the story of Ben Harris, Rob Tison, and Eric Valor, who joined dozens of other patients in meticulously researching experimental treatments and in dosing themselves with chemical substitutes. All the while, the patients tracked their results openly online—charting thrilling improvements and devastating physical decline—hoping their experiences would enlighten others and advance ALS research. Facing a frustratingly slow and opaque biomedical research system, they believed their most important work was to share their data with the world. As Ben always said, “If it is done in secret, it is done in vain.”

Until I Say Goodbye, by Susan Spencer-Wendel’s

Susan Spencer-Wendel’s Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).

After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig’s disease, she embarks on several adventures, traveling to several countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her fourteen-year-old daughter, Marina, to New York City’s Kleinfeld’s Bridal to shop for Marina’s future wedding dress—an occasion that Susan knows she will never see.

Co-written with Bret Witter, Until I Say Good-Bye is Spencer-Wendel’s account of living a full life with humor, courage, and love, but also accepting death with grace and dignity. It’s a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.

Dying to Be Healed, by Holly Gerrish

Dying to be Healed follows Holly Gerrish’s touching and intensely personal journey when her husband, Mark, is diagnosed with cancer at the age of twenty-eight and, fifteen years later, with ALS. In spite of her nursing experience and long-held beliefs, Holly ventures beyond the boundaries of medicine in an effort to help improve her husband’s prognosis.

A Journey of Love by Jan Mathew

As Roger Schmitz, a professor, Dean and Vice President of the University of Notre Dame, progressed through the debilitation of ALS, he was surrounded by the love of his family and many close friends. This love did not just happen, it was built over a lifetime of closeness, caring about each other with support through life’s tougher moments. Though Roger lost his brave battle, his family and friends have never forgotten him. This is a book that teaches, inspires and moves the reader to cherish the people they are given to love even, and especially, in difficult circumstances.

The Forty One: A story of hope and a car, by Blu Sanders

“I thought I left West Texas for good, but sometimes things just don’t quite end up like you think they will. At 35, I came home to care for my dying father and to fix a car. Maybe even to fix myself.”

Blitz Your Life: Stories from an NFL and ALS Warrior, by Tim Shaw

Winner in two categories at the 2018 Benjamin Franklin Awards, Blitz Your Life is a collection of reflections from a former NFL linebacker on a life lived fearlessly and challenges from a man with a sense of urgency for impact. These powerful stories range from Tim’s time on the football field to the radically different life and goals that resulted from his diagnosis with ALS in 2014. Tim also shares stories of ordinary people who have faced everyday challenges and accomplished extraordinary things. Whether they sweep floors or rebuild neighborhoods or make music, all are living lives that make a difference.

At times funny and others serious, Tim encourages readers to write their own goals and stories while pursuing their dreams. Through his whiteboard challenges, he provides practical help that takes readers on a road to success. From his NFL days to his support of ALS awareness, this fighter’s message is a courageous call to find and enjoy a life with purpose.

All the Colors Came Out: A Father, a Daughter, and a Lifetime of Lessons, by Kate Fagan

Kate Fagan and her father forged their relationship on the basketball court, bonded by sweaty high fives and a dedication to the New York Knicks. But as Kate got older, her love of the sport and her closeness with her father grew complicated. The formerly inseparable pair drifted apart. The lessons that her father instilled in her about the game, and all her memories of sharing the court with him over the years, were a distant memory.

When Chris Fagan was diagnosed with ALS, Kate decided that something had to change. Leaving a high-profile job at ESPN to be closer to her mother and father and take part in his care, Kate Fagan spent the last year of her father’s life determined to return to him the kind of joy they once shared on the court. All the Colors Came Out is Kate Fagan’s completely original reflection on the very specific bond that one father and daughter shared, forged in the love of a sport which over time came to mean so much more.

Studded with unforgettable scenes of humor, pain and hope, Kate Fagan has written a book that plumbs the mysteries of the unique gifts fathers gives daughters, ones that resonate across time and circumstance.

Every Note Playedby Lisa Genova

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.

Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.

He knows his left arm will go next.

From neuroscientist and New York Times bestselling author of Still Alice comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.

Living as a Dead Man: Life Lessons Gained from Losing One Life to Receiving a Greater Purpose, by Jeff Lester

Jeff’s story is about the destruction of the life he expected to live then rebuilding a new, more purposeful life out of its ashes. Along the way, he weathers huge storms and overcomes what seems to most people insurmountable odds. This occurs while Jeff endures the daily challenges created by the devastation from one of the worst diseases someone can experience.

Ultimately, it is a story about being led into the light emerging from the darkness that enveloped his life even before ALS entered it. Jeff learns to focus on the blessings in his life instead of what he has lost and the difficulties he faces. He shares the lessons he learned and what is essential to living a happy and fulfilling life with greater purpose. Anyone who struggles with a problem in their life will find inspiration from Jeff’s story to overcome it and see better days.

No Pressure, No Diamonds: Mining for Gifts in Illness and Loss, by Teri A. Dillion

At 35 and newly married, thriving psychotherapist and Buddhist practitioner Teri Dillion had plenty of tidy answers on offer for creating a meaningful and beautiful life. But once diagnosed with Lou Gehrig’s disease (ALS) and told to get her affairs in order before facing total paralysis, she finds all smug psychology and easy equanimity no match for her harrowing new prognosis. 

With a humorous and nuanced exploration of the colorful landscapes of alternative medicine and self-help culture, No Pressure, No Diamonds recounts Teri’s powerful healing journey while shining a light on the fragile blessings of embodiment in general. As she grows disillusioned with toxic positivity and bypassing spiritual gurus in her determined pursuit of a miraculous cure, she’s forced to define her own deepest beliefs about hope, meaning-making, and healing.

Too Many Reasons to Live, by Rob Burrow

The inspirational memoir of one of Rugby League’s true greats, Too Many Reasons to Live documents Rob Burrow’s battle with motor neurone disease and the incredible courage and resilience he has shown to keep fighting to the very end.

Too Many Reasons to Live isn’t just a rugby league book, or just a book for sports fans. It’s an extraordinary story of love, friendship, of infinite kindness and boundless courage. As Rob takes on his new battle, he is doing what he has done his entire life – proving people wrong. Rugby League, winning friendship, at its heart Too Many Reasons to Live is a book for anyone either fighting their own battles with illness or other kinds of adversity, and a reminder that no one is going through it alone.

Final Season, by Tim Green

Drawing from his own experiences, both with the NFL and with his ALS diagnosis, New York Times bestselling author and former Atlanta Falcon’s player Tim Green highlights the importance of family, community, and love of football while also cautioning against the risks of the beloved sport.

Thinking Through VA Benefits and VA Care: A Resource for Veterans with ALS and Their Caregiversby Mary Hahn Ward and Lara Garey

“Thinking Through VA Benefits & VA Care” is comprised of Veterans Administration benefits and healthcare information as it pertains to the veteran service-connected for ALS. The intent of this book is to inform and educate the veteran and their caregivers on the many VA benefits and care available to the veteran with ALS. It was written in the hopes that this book will help veterans, and their caregivers, spend less time with VA matters and more time enjoying life.

Dance Me to the End: Ten Months and Ten Days with ALS, by Alison Acheson

Dance Me to the End is an evocative memoir about the emotional impact of witnessing a loved one suffer from a neurological, degenerative, and terminal disease. This is a detailed account of grief, shock and pain coexisting with the levity, laughter and love shared with her husband and sons in those final months of Marty’s life.

Breaker Breaker 1-9: Where’s My Little Man At? by Sabrina Johnson

Monster Truck Moe and Little T the Tow Truck had a bond like no other, like Sabrina Johnson’s real life son and father. Sabrina Johnson lost her father to a sporadic case of ALS. He was not supposed to rust early, but just like his character in the story, the parts that he was born with unfortunately deteriorated. There is nothing that Moe could have done differently to stop the rust or his ALS diagnosis, but what can be done differently is how people react to those who might look a little different than the people we see in our own homes.

A Life Derailed: My Journey with ALS by Nate Methot

An athletic young professional, only a few years out of college, begins to feel something is wrong with his body. Unknowingly, he has already started a new and terrifying journey.

A Life Derailed is an honest and unapologetic memoir about a young man’s journey navigating the relentless and ever-increasing challenges of a life with ALS. It’s a story about loss, self-reflection, and growing up. About hiding and loneliness and shame; unshakeable strength and absolute weakness at once. Nate’s ultimate fight is to accept what has happened and find a new purpose in life.

Never Say Invisible: A Memoir of Living and Being Seen with ALS by Jeremy Schreiber

Jeremy Schreiber was on top of the world—athletic, newly married, successful. And then something went terribly wrong. In this moving memoir, he shares his journey after he received a terrifying diagnosis: ALS.

While fighting for his independence and then for his life, Jeremy gave his all to the ALS and disability communities. Never Say Invisible is his legacy gift. Smart, clever, and humorous, his story is a testament to what can be learned and achieved despite a terminal illness.

Tenacious: How God Used a Terminal Diagnosis to Turn a Family and a Football Team into Champions, by Jeremy and Jennifer Williams

Jeremy Williams captured the nation’s imagination by coaching his high school football team to unprecedented heights while combating ALS and caring for a son with spina bifida. This is his family’s inspiring story.

America first met Jeremy and Jennifer Williams when Extreme Makeover: Home Edition rebuilt their Depression-era farmhouse into a beautiful, handicap-accessible haven… It made for compelling television but only told a little slice of the story. Tenacious gives you the rest―a tender love story, a thrilling sports story, and an unforgettable testimony to the power of faith and grit in the face of almost overwhelming adversity. 

Flying into the Storm A Story of Love and Loss: Diary of a Wife-Caregiver, by B. J. Gustafson

This book is about love and what happens when a person is given the diagnosis of a degenerative and terminal illness. It is about the caregiver, the emotional roller coaster, and how the relationship changes throughout the illness. The book is meant as the true story of how one person handled these life changes. Gustafson’s goal, through this narrative, is for other caregivers to see they are not alone in their feelings or emotions.

All Is Well: Life Lessons from a Preacher’s Father, by Deacon Kevin P. Martin Jr.

Part Tuesday’s With Morrie and part Townie, this memoir offers solace and a path for those who are experiencing or have experienced grief from losing a parent, especially to terminal illness. Those that believe in a higher power (especially but not limited to the Catholic community), those from Boston and elsewhere in New England, and those looking to find lessons in the good life well-lived will readily find themselves in All is Well. 100% of this book’s profits will go to ALS research, care charities, and support organizations.

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