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eyes to the wind, by ady barkan
You are reading: Amyotrophic lateral sclerosis books
In this inspiring and moving memoir, reminiscent of when breath becomes air and the bright hour, activist ady barkan explores her life with ela and how her diagnosis gave her a new and deep understanding of her commitment with social justice for all. .
als saved my life… until he wasn’t anymore, by dr. jenni berebtisky
Most people know that life won’t necessarily go as planned. But what do we do when nothing goes as expected? How do we deal with unpredictable changes in body and spirit, changes that require a constant change in our view of ourselves, 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. Hoping to help others move on after life-changing events, Jenni shares her life story with Als, describing the practical and existential changes needed to adapt and thrive. Embodying the idea that courage doesn’t always roar, Jenni reveals the combination of self-reflection, radical acceptance, courage, and social support that have allowed her to stay true to herself as she lives her life to the fullest.
Caddy for Life: The Bruce Edwards Story by John Feinstein
renowned sportswriter and bestselling author of a good walk spoiled provides an inspiring portrait of legendary golf caddy bruce edwards, who has caddyed for tom watson since 1973, while continuing the work he loves despite the increasing physical limitations of Lou Gehrig’s disease. 300,000 first run.
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, a teacher or a colleague. someone older, patient and wise, who understood you when you were young and you were searching, helped you see the world as a deeper place, gave you good advice to help you navigate it.
the luckiest man: the life and death of lou gehrig, by jonathan eig
draws on hundreds of new interviews and unpublished letters to present a comprehensive account of the life of the Hall of Fame player whose career was cut short by the illness that now bears his name, in a portrait he shares background details about his rivalry with babe ruth, the onset of his illness, and the last years of his life. 100,000 first impressions.
me and my luke, by eleanor gehrig
lou gehrig’s widow recalls their life together, the six years of travel and excitement before lou’s amyotrophic lateral sclerosis diagnosis and the two years of fear and courage afterward.
personal evidence: how terminally ill 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 prolongs the lives of all patients by an average of just three months. but a group of patients took their treatments into their own hands, fighting not only for their lives, but for a disease community that for years has fought to be heard. Personal Testing is the story of Ben Harris, Rob Tison, and Eric Valor, who joined dozens of other patients in meticulously researching experimental treatments and dosing chemical substitutes. Meanwhile, patients tracked their results openly online, recording exciting improvements and devastating physical decline, hoping their experiences would enlighten others and advance research. faced with a frustratingly slow and opaque biomedical research system, they believed their most important job was to share their data with the world. as ben always said, “if it’s done in secret, it’s done in vain.”
Until I Say Goodbye, by susan spencer-wendel
Until I Say Goodbye: My Year of Living Joyfully by Susan Spencer-wendel is a moving and inspiring memoir of a woman who makes the most of her last days after discovering she has amyotrophic lateral sclerosis (amyotrophic lateral sclerosis). ).
after spencer-wendel, a famous journalist for the palm beach post, learns of her diagnosis of ela, more commonly known as lou gehrig’s disease, she embarks on several adventures, traveling to various countries and share special experiences with loved ones. A trip takes Spencer-Wendel and her fourteen-year-old daughter, Marina, to Kleinfeld’s wedding in New York City to shop for Marina’s future wedding dress, an occasion Susan knows she’ll never see.
Co-written with Bret Witter, Until You Say Goodbye is Spencer-wendel’s tale of living a full life with humor, courage, and love, but also embracing death with grace and dignity. it is a celebration of life, a look into the face of death and the effort we must make to show the people we love and care how much they mean to us.
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dying to be healed, by holly gerrish
Dying to be Healed follows Holly Gerrish’s moving and intensely personal journey as her husband, Mark, is diagnosed with cancer at the age of twenty-eight and, fifteen years later, with ALS. Despite her nursing background 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, professor, dean, and vice president of the university of notre dame, moved through als’s decline, he was surrounded by the love of his family and many close friends. this love did not arise by chance, it was built over a lifetime of closeness, caring for each other with support in the most difficult moments of life. Although Roger lost his brave battle, his family and friends never forgot him. this is a book that teaches, inspires and moves the reader to appreciate people who give themselves to love even, and especially, in difficult circumstances.
Forty-One: A Story of Hope and a Car, by Blu Sanders
“i thought i was gone from west texas forever, but sometimes things just don’t turn out the way you think they will. At 35, I came home to take care of my dying father and fix a car. maybe even to fix myself.”
blitz your life: tales of an nfl and als warrior, by tim shaw
winner in two categories of the 2018 benjamin franklin awards, bomb your life is a collection of reflections by a former nfl linebacker on a life lived without fear and the challenges of a man with a sense of urgency for the impact. these powerful stories range from tim’s time on the soccer field to the radically different lives and goals that resulted from her diagnosis with ela in 2014. tim also shares stories of ordinary people who have faced everyday challenges and accomplished extraordinary things . Whether they’re sweeping floors, rebuilding neighborhoods, or making music, they all live lives that make a difference.
sometimes funny and sometimes serious, tim encourages readers to write their own goals and stories as they pursue their dreams. Through her whiteboard challenges, she provides practical help that leads readers down the path to success. From his days in the NFL to his support of ALS awareness, this fighter’s message is a courageous call to find and enjoy a life of 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 grew older, her love of the sport and her closeness to her father became complicated. the previously inseparable couple broke up. the lessons her father instilled in her about the game, and all the memories of her sharing the court with him over the years, were a distant memory.
When chris fagan was diagnosed with ela, kate decided something had to change. Leaving a high-profile job at ESPN to be closer to her mother and father and involved in their care, Kate Fagan spent the last year of her father’s life determined to bring back the kind of joy he once had. They shared on the field. All the Colors Came Out is Kate Fagan’s completely original reflection on the very specific bond a father and daughter shared, forged in love for a sport that over time came to mean so much more.
Filled with unforgettable scenes of humor, pain, and hope, Kate Fagan has written a book that explores the mysteries of unique gifts fathers give daughters, ones that resonate through time and circumstance.
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every note played, by lisa genova
richard, an accomplished concert pianist, received standing ovations from audiences around the world awed by his rare combination of emotional resonance and impeccable technique. each finger on his hands was a finely calibrated instrument, dancing across the keys and striking each note with pinpoint precision. that was eight months ago.
richard now has als, and his entire right arm is paralyzed. His fingers are powerless, motionless, devoid of possibility. the loss of his hand feels like a death, a loss of true love, a divorce, a divorce from him.
He knows his left arm will be next.
From the 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 Like a Dead Man: Life Lessons from Losing a Life for a Greater Purpose, by Jeff Lester
Jeff’s story is about destroying the life he hoped to live and then rebuilding a new and more useful life from its ashes. Along the way, he weathers great storms and overcomes what seems insurmountable to most people. This occurs as Jeff endures the daily challenges created by the devastation of one of the worst diseases anyone can experience.
Ultimately, it’s a story about being led into the light that emerges from the darkness that enveloped his life even before he 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 struggling with a problem in his life will find inspiration in Jeff’s story to get through it and see better days.
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No Pressure, No Diamonds: Extracting Gifts in Sickness and Loss, by teri a. dillion
At 35 and newly married, affluent psychotherapist and Buddhist practitioner Teri Dillion had many neat answers to offer for creating a meaningful and beautiful life. But once he’s diagnosed with Lou Gehrig’s Disease (ALS) and told to get his affairs in order before facing total paralysis, he finds all the cocky psychology and easy equanimity no match for his gut-wrenching new forecast.
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 shedding light on the fragile blessings of incarnation in general. As she becomes disillusioned with toxic positivity and bypasses spiritual gurus in her determined search for a miracle cure, she is forced to define her own deepest beliefs about hope, meaning-making, and healing.
too many reasons to live, by rob burrow
An inspiring memoir from one of rugby league’s true greats, Too Many Reasons to Live documents rob burrow’s battle with motor neuron disease and the incredible courage and resilience he has shown to keep fighting until the end. .
Too Many Reasons to Live is not just a rugby league book or just a book for sports fans. is an extraordinary story of love, friendship, infinite kindness and boundless courage. as rob faces his new battle, he’s doing what he’s done his whole life: proving people wrong. rugby league, winning the friendship, in essence, too many reasons to live is a book for anyone struggling with their own illness or other adversity, and a reminder that no one is going through it alone.
final season, by tim green
Drawing on his own experiences, both with the nfl and his diagnosis with als, new york times bestselling author and former atlanta falcon player tim green highlights the importance of family, community, and the love of soccer while warning against the risks of the beloved sport.
Reflecting on VA benefits and care: A resource for veterans with ela and their caregivers, by mary hahn ward and lara garey
“think about the benefits of va & va care” is comprised of veterans administration benefits and health care information as it pertains to service-connected veterans for als. The intent of this book is to inform and educate the Veteran and their caregivers about the many benefits and care available to the Veteran with ALS. was written in the hope that this book will help veterans and their caregivers spend less time going about their business 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 seeing a loved one suffer from a neurological, degenerative and terminal disease. This is a detailed account of the grief, shock and pain that coexist with the lightness, laughter and love shared with her husband and her children in the last months of Marty’s life.
breaker breaker 1-9: where’s my little man? by sabrina johnson
monster truck moe and little t the tow truck had a bond like no other, as sabrina johnson’s real life son and father. sabrina johnson lost her father to a sporadic case of als. She wasn’t supposed to rust early, but just like her character in the story, the parts she was born with sadly deteriorated. there’s nothing moe could have done differently to stop rust or his als diagnosis but what can be done differently is how people react to those who may look a little different than the people we see in our own homes.
a life derailed: my journey with als by nate methot
A young athletic professional, just a few years out of college, begins to feel that something is wrong with his body. without knowing it, 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 her. is a story about loss, self-reflection and growth. about hiding, loneliness and shame; unbreakable strength and absolute weakness at the same time. Nate’s last struggle is to come to terms with 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, newlywed, successful. and then something went terribly wrong. In this moving memoir, he shares his journey after receiving a terrifying diagnosis: Als.
while fighting for his independence and then for his life, jeremy gave himself completely to the communities of people with aliases and people with disabilities. never say invisible is her legacy gift. Smart, witty and humorous, his story is a testament to what can be learned and achieved despite a terminal illness.
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