Download or read book We Know How This Ends written by Bruce H. Kramer and published by U of Minnesota Press. This book was released on 2015-04-01 with total page 215 pages. Available in PDF, EPUB and Kindle. Book excerpt: Nautilus Book Awards — Silver Award Winner 2010 had been a very good year for Bruce H. Kramer. But what began as a floppy foot and leg weakness led to a shattering diagnosis: he had amyotrophic lateral sclerosis. ALS is a cruel, unrelenting neurodegenerative disease in which the body’s muscles slowly weaken, including those used to move, swallow, talk, and ultimately breathe. There is no cure: ALS is a death sentence. When death is a constant companion, sitting too closely beside you at the dinner table, coloring your thoughts and feelings and words, your outlook on life is utterly transformed. The perspective and insights offered in We Know How This Ends reveal this daily reality and inspire a way forward for anyone who has suffered major loss and for anyone who surely will. Rather than wallowing in sadness and bitterness, anger and denial, Kramer accepted the crushing diagnosis. The educator and musician recognized that if he wanted a meaningful life, then embracing his imminent death was his only viable option. His decision was the foundation for profound, personal reflection and growth, even as his body weakened, and inspired him to share the lessons he was learning from ALS about how to live as fully as possible, even in the midst of devastating grief. At the time Kramer was diagnosed, broadcast journalist Cathy Wurzer was struggling with her own losses, especially her father’s slow descent into the bewildering world of dementia. Mutual friends put this unlikely pair—journalist and educator—together, and the serendipitous result has been a series of remarkable broadcast conversations, a deep friendship, and now this book. Written with wisdom, genuine humor, and down-to-earth observations, We Know How This Ends is far more than a memoir. It is a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life.
Download or read book Navigating Life with Amyotrophic Lateral Sclerosis written by Mark B. Bromberg and published by Oxford University Press. This book was released on 2017 with total page 281 pages. Available in PDF, EPUB and Kindle. Book excerpt: Navigating Life with Amyotrophic Lateral Sclerosis provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by ALS. This guide covers all aspects of managing ALS, from the onset of symptoms, diagnosis, treatments, and coping strategies, to the use of home health care or hospice, and new research in the field. The book also sheds lights on difficult topics, such as end-of-life care and managing legal affairs. Formatted in a question-and-answer style, peppered throughout with patient stories, and with sections devoted to family members and caregivers, this compassionate resource provides guidance to those seeking to understand how to live with this disease.
Download or read book Eyes to the Wind written by Ady Barkan and published by Simon and Schuster. This book was released on 2019-09-10 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: In this “gripping story of resistance and the triumph of human will” (Senator Elizabeth Warren), activist and subject of the documentary Not Going Quietly 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. Ady Barkan loved taking afternoon runs on the California coast and holding his newborn son, Carl. But one day, he noticed a troubling weakness in his hand. At first, he brushed it off as carpal tunnel syndrome, but after a week of neurological exams and two MRIs, he learned the cause of the problem: amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. At age thirty-two, Ady was given just three to four years to live. Yet despite the devastating diagnosis, he refused to let his remaining days go to waste. Eyes to the Wind is a rousing memoir featuring intertwining storylines about determination, perseverance, and how to live a life filled with purpose and intention. The first traces Ady’s battle with ALS: how he turned the initial shock and panic from his diagnosis into a renewed commitment to social justice—not despite his disability but because of it. The second, told in flashbacks, illustrates Ady’s journey from a goofy political nerd to a prominent figure in the enduring fight for equity and justice whose “selfless activism fighting to make health care a right should be an inspiration to us all” (Senator Bernie Sanders). From one of the most vocal advocates for social justice, Eyes to the Wind’s “primary question is existential: how to live when you are dying? Barkan’s answer is to share, open up, act, and capital-R Resist, and his memoir, clearly and candidly written, establishes a legacy” (Booklist).
Download or read book ALS Saved My Life Until It Didn t written by Dr. Jenni Kleinman Berebitsky and published by . This book was released on 2018-03-18 with total page 278 pages. Available in PDF, EPUB and Kindle. Book excerpt: The author shares her insights and perspectives on living with ALS, or Lou Gehrig's disease, sharing both her thoughts on life and happiness as well as practical ideas for daily living with this progressive neuromuscular disease.
Download or read book Every Note Played written by Lisa Genova and published by Simon and Schuster. This book was released on 2018-03-20 with total page 336 pages. Available in PDF, EPUB and Kindle. Book excerpt: “Unsparing in her depiction of the disease’s harrowing effects, neuroscientist Genova also celebrates humanity.” —People “Sometimes it’s easier to tell truth in fiction…And she tells it with heart and hope.” —NPR “Her juxtaposition of scientific detail with compassionate, heartfelt storytelling is unparalleled.” —Bookreporter “Every Note Played will grip and gut you.” —The Boston Globe 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. 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. Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it. When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late. Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.
Download or read book The Tale of an ALS Reversal written by McFinn Lovere and published by . This book was released on 2021-12-03 with total page 182 pages. Available in PDF, EPUB and Kindle. Book excerpt: The time has come to tell my ALS reversal story. I have been silent long enough. In 2006 I was diagnosed with ALS and given 18 months to get my affairs in order. My physical condition deteriorated rapidly, until wheelchair-bound, I was only able to move my head and two fingers. My story is one of heartache, despair, the wish to end my life, and the Supernatural Gift of recovery. This book chronicles my journey and recovery as a rare ALS reversal. I feel I am in a unique position to offer solace and the understanding that only comes from enduring this disease. My Reversal taught me to never give up HOPE
Download or read book White Girls written by Hilton Als and published by McSweeney's. This book was released on 2013-11-30 with total page 339 pages. Available in PDF, EPUB and Kindle. Book excerpt: White Girls, Hilton Als’s first book since The Women fourteen years ago, finds one of The New Yorker's boldest cultural critics deftly weaving together his brilliant analyses of literature, art, and music with fearless insights on race, gender, and history. The result is an extraordinary, complex portrait of “white girls,” as Als dubs them—an expansive but precise category that encompasses figures as diverse as Truman Capote and Louise Brooks, Malcolm X and Flannery O’Connor. In pieces that hairpin between critique and meditation, fiction and nonfiction, high culture and low, the theoretical and the deeply personal, Als presents a stunning portrait of a writer by way of his subjects, and an invaluable guide to the culture of our time.
Download or read book Kickin ALS written by Carrey Dewey and published by . This book was released on 2019-10 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: Carrey Dewey and her husband, Eric, worked hard to build their dream life: a strong marriage, three incredible kids, and a beautiful home. It all came crashing down when Carrey was diagnosed at age 42 with amyotrophic lateral sclerosis (ALS) - a disease that had no treatment or cure, a disease that is 100 percent fatal. Her doctor told her, "Get your paperwork in order and go make memories." But Carrey, a smart, courageous, and often very funny woman, was determined to do more - to spend what life she had left advocating for ALS research and educating people about the disease.Kickin' ALS is a compilation of Carrey's personal Facebook posts, written from shortly after her diagnosis in June 2014 until just before her death in May 2018. It is a powerful and poignant chronicle of one woman's experience with the disease made famous through the Ice Bucket Challenge.More than 5,000 people in the United States are diagnosed with ALS each year, according to the ALS Association, and it is estimated that at least 16,000 Americans may be living with ALS at any given time.Proceeds from the sale of this book will be donated to organizations supporting ALS research and education, as well as ALS patients and their families.
Download or read book Until I Say Good Bye written by Bret Witter and published by Hachette UK. This book was released on 2013-03-14 with total page 346 pages. Available in PDF, EPUB and Kindle. Book excerpt: THE NEW YORK TIMES BESTSELLER What would you do with one last year? Susan Spencer-Wendel was determined to laugh instead of cry. In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS) - Lou Gehrig's disease - an irreversible condition that systematically destroys the nerves that power the muscles. She was 44-years-old, with three young children, and she had only one year of health remaining. She decided to live that year with joy. She left her job as a journalist and spent time with her family. She built a meeting place for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She went to the beach with her sons and to Kleinfeld's bridal shop in New York City with her teenage daughter, Marina, for a glimpse of the wedding she would never attend. She also wrote this book. No longer able to walk or even lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working. And yet Until I Say Good-Bye is not angry or bitter. It is sad in parts - how could it not be? - but it is filled with Susan's optimism, joie de vivre and sens of humour. It is a book that, like Susan, will make everyone smile. From a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is Susan Spencer-Wendel's unforgettable gift to her loved ones and to us: a record of their final experiences together and a reminder that every day is better when it is lived with joy.
Download or read book The World as Metaphor in Robert Musil s The Man Without Qualities written by Genese Grill and published by Camden House. This book was released on 2012 with total page 218 pages. Available in PDF, EPUB and Kindle. Book excerpt: The first study to utilize the Klagenfurt Edition of Musil's Nachlass offers a close reading of textual variations, emphasizing Musil's commitment to the artist's role in re-creating the world. Robert Musil, known to be a scientific and philosophical thinker, was committed to aesthetics as a process of experimental creation of an ever-shifting reality. Musil wanted, above all, to be a creative writer, and obsessively engaged in almost endless deferral via variations and metaphoric possibilities in his novel project, The Man without Qualities. This lifelong process of writing is embodied in the unfinished novel by a recurring metaphor of self-generating de-centered circle worlds. The present study analyzes this structure with reference to Musil's concepts of the utopia of the Other Condition, Living and Dead Words, Specific and Non-Specific Emotions, Word Magic, andthe Still Life. In contrast to most recent studies of Musil, it concludes that the extratemporal metaphoric experience of the Other Condition does not fail, but rather constitutes the formal and ethical core of Musil's novel. Thefirst study to utilize the newly published Klagenfurt Edition of Musil's literary remains (a searchable annotated text), The World as Metaphor offers a close reading of variations and text genesis, shedding light not onlyon Musil's novel, but also on larger questions about the modernist artist's role and responsibility in consciously re-creating the world. Genese Grill holds a PhD in Germanic Literatures and Languages from the GraduateSchool and University Center of the City University of New York.
Download or read book Blitz Your Life written by Tim Shaw and published by Dexterity. This book was released on 2017-01-03 with total page 224 pages. Available in PDF, EPUB and Kindle. Book excerpt: If you've ever dreamed of something more in life, this book is for you. 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.
Download or read book The Luckiest Man written by John R. Paine and published by Nelson Books. This book was released on 2018 with total page 224 pages. Available in PDF, EPUB and Kindle. Book excerpt: How do you experience God's intimate, comforting, tangible presence? In The Luckiest Man, John Paine reveals how he found the answer to this most important of all questions--by facing a terminal diagnosis. At middle age, John Paine thought he knew what it meant to have a relationship with God. He was a successful businessman, a well-respected Christian leader, a Bible teacher, and--outwardly, at least--the spiritual leader of his family. He was satisfied and thought he understood what it meant to know and experience God. But did he? John's journey into true, mystical intimacy with God began when a neurologist diagnosed him with ALS, or Lou Gehrig's disease, and said, "Go home and get your affairs in order." Seventeen years later, John tells his story, recounting the ways God intervened in his life, freeing him from all that prevented intimacy with God, even as John slipped into pain, paralysis, and further toward death. In stunning, insightful prose, The Luckiest Man points to the God who lovingly, though occasionally painfully, drew John into the richness of friendship. In this profoundly moving memoir, John Paine reveals the secret to intimacy with God and provides hope to all who are in the middle of their own trials. They, too, will understand why John considers himself the "luckiest man."
Download or read book Tuesdays with Morrie written by Mitch Albom and published by Crown. This book was released on 2007-06-29 with total page 226 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • A special 25th anniversary edition of the beloved book that has changed millions of lives with the story of an unforgettable friendship, the timeless wisdom of older generations, and healing lessons on loss and grief—featuring a new afterword by the author “A wonderful book, a story of the heart told by a writer with soul.”—Los Angeles Times “The most important thing in life is to learn how to give out love, and to let it come in.” 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. For Mitch Albom, that person was his college professor Morrie Schwartz. Maybe, like Mitch, you lost track of this mentor as you made your way, and the insights faded, and the world seemed colder. Wouldn’t you like to see that person again, ask the bigger questions that still haunt you, receive wisdom for your busy life today the way you once did when you were younger? Mitch Albom had that second chance. He rediscovered Morrie in the last months of the older man’s life. Knowing he was dying, Morrie visited with Mitch in his study every Tuesday, just as they used to back in college. Their rekindled relationship turned into one final “class”: lessons in how to live. “The truth is, Mitch,” he said, “once you learn how to die, you learn how to live.” Tuesdays with Morrie is a magical chronicle of their time together, through which Mitch shares Morrie’s lasting gift with the world.
Download or read book Dance Me to the End written by Alison Acheson and published by Brindle and Glass. This book was released on 2019-10-08 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: A profoundly honest and intensely personal story of a woman who cares for her husband after the devastating terminal diagnosis of ALS. Marty, age 57, was given a preliminary diagnosis of ALS by his family doctor. Seven weeks later, the diagnosis was confirmed by a neurologist. Ten months and ten days later, Marty passed away. From day one, Alison, Marty’s spouse of over twenty-five years, kept a journal as a way to navigate the overwhelming state of her mind and soul. Soon the rawness of her words harmonized to tell the story of Marty’s diagnosis, illness, and decline. Her journal became a chronicle of caregiving as well as an emotional exploration of the tensions between the intuitive and the pragmatic, the logical and illogical, and the all-consuming demands of being both spouse and nurse. Divided into short pieces, some of which reads as free verse, Alison’s words are at times profoundly intense and painfully private. The composition of the intricate notes of a life in its final movements includes another stanza of the journal that became Dance Me to the End: the guiding of children grappling with the imminent loss of a parent, and the shifting roles of family, friends, and community—all of which add their own complex rhythms. 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.
Download or read book Randy s Way written by Thomas Gill and published by Createspace Independent Publishing Platform. This book was released on 2018-03 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: Randy's Way is a must read for anyone interested in studying the lives of real-life heroes and heroines and learning how they earned their titles. The book tells the story of a dynamic, "high potential" Marine Corps officer who selflessly exchanged his quality of life for a role in the Gulf War and who, in so doing, began to cultivate a closer, hand-in-hand walk with God. Kim, Randy's wife of three years at the time, never wavered in her devotion to Randy, even when given the devastating news that her gifted and athletic husband had contracted ALS (Lou Gehrig's Disease) as a result of the Gulf War's toxic cocktail. The epic account of events leading up to that life-altering moment and the twenty-five years that followed gives new meaning to the phrase, "courage under fire." Enjoy this inspiring example of how to keep ones faith strong while being faithful and resilient as a husband and father, in spite of overwhelming challenges. Set in the quaint resort town of Emerald Isle, North Carolina, this true story illustrates how people can overcome any challenge through faith in God. Chocked full of humorous and serious anecdotes covering nearly fifty years, readers will be inspired by how the residents of this small town on the southern Outer Banks band together to ensure Randy, Kim, Nicole and Kyle are included in all aspects of the island community. Randy's Way is a tribute to the heroic lives the entire Hebert family have lived since coming face-to-face with this debilitating disease nearly twenty-five years ago.
Download or read book Surrounded by Love written by Jan Mathew and published by . This book was released on 2020-09-09 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: A touching account of how a family rallied around their father for the last year of his life as he battled ALS.
Download or read book The Ice Bucket Challenge written by Casey Sherman and published by University Press of New England. This book was released on 2017-09-05 with total page 186 pages. Available in PDF, EPUB and Kindle. Book excerpt: While everyone knows of the Ice Bucket Challenge, the viral craze that swept the nation in summer 2014, too few know the truly inspirational story behind it. Pete Frates was a man at war with his own body. A man whose love for others was unshakable. A man who refused to fight alone, and in so doing mobilized a global army to combat one of the most devastating diseases on earth: ALS, or Lou Gehrig's disease. When disease crippled Frates, the former Boston College baseball star turned tragedy into inspiration. Pete's story is a testament to the power of love, the steadfastness of family, the generosity of strangers, and the compassion of crowds. Half of the authors' proceeds will go to the Frates family.
