Download or read book Someone I Love Has ALS written by Jodi O'Donnell-Ames and published by People Tested Publications. This book was released on 2015-09-09 with total page 136 pages. Available in PDF, EPUB and Kindle. Book excerpt: Kevin and Jodi O'Donnell, were a young New Jersey couple busy raising a toddler and making plans for their future when they received life-altering news in 1995 that changed everything as they knew it. Kevin was only 30 years old when he was told that his health problems were the result of a rare, terminal disease called ALS (Amyotrophic Lateral Sclerosis), or Lou Gehrig's disease. Kevin and Jodi had not heard of ALS until then and had no idea how those three letters would challenge everything they thought to be certain. After more than 20 years of working with ALS families, Jodi realized that more information and better resources could be available to help families who are coming to grips with the challenges of the disease and the caregiving responsibilities that are involved. In the Introduction to "Someone I Love Has ALS: A Family Caregiver's Guide," Jodi recounts the journey she took as a caregiver, advocate and writer and embraces and shares the lessons learned throughout the pages of this wonderful guide, "This guide was created by a variety of caregivers and professionals who have years of experience with various aspects of ALS. It was written by volunteers and experts who care about ALS and your journey. It is the resource that I wish we had received along with the shocking diagnosis." Although Kevin died of ALS in 2001 at the age 35, the disease never won the battle. ALS only strengthened Kevin and Jodi's love for God and each other and it created an even bigger purpose and plan: the creation of Hope Loves Company(r), the only non-profit whose mission is to support the children and grandchildren caregivers of PALS (people with ALS).
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 But She Still Can Love A Child s Understanding of ALS written by Amalia Flecksteiner and published by . This book was released on 2021-04-08 with total page 28 pages. Available in PDF, EPUB and Kindle. Book excerpt: ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that currently has no cure. ALS is a disease that typically involves a gradual onset, with initial symptoms that can be quite varied in different people. One person may struggle with lifting a coffee cup or grasping a pen, while others may begin slurring or losing their speech - ALS affects everyone differently. Regardless, ALS is a disease that always takes - takes someone's ability to help themselves, takes someone's ability to express themselves, and ultimately takes someone from the ones who love them most.Mom was taken from us by this disease too soon. She was a nurse of over 30 years, always taking care of others, to end up being taken care of herself. Though we ultimately lost Mom to ALS, we gained a purpose to bring awareness and support to others who may have or had the same experience with their loved one. Whether it's Mom, Dad, Grandma, Grandpa, or another loved one affected by this disease that always takes, always remember - but they still can love.For more ALS information and resources, visit als.org. A large portion of the proceeds from this book will benefit the ALS Association of Georgia Chapter's 'Walk to Defeat ALS' in honor of Mom, Marina Pascarelli.
Download or read book Lou Gehrig Disease Als Or Amyotrophic Lateral Sclerosis Explained Als Symptoms Signs Stages Types Diagnosis Treatment Caregiver Tips Aids And written by Robert Rymore and published by Imb Publishing. This book was released on 2013-08-01 with total page 154 pages. Available in PDF, EPUB and Kindle. Book excerpt: The author, Robert Rymore, had a good friend who was diagnosed with Lou Gehrig Disease. He wanted to be able to help her and decided to buy some books about the disease. To his disappointment there was a lack of good informative books available on the subject. He decided to investigate the subject thoroughly and write a book about it to be able to help others. He decided he would start talking to professionals - doctors, physical therapists, speech therapists and occupational therapists - to learn more. He quickly realized the information he was getting would be extremely valuable for other people with ALS and their loved ones. This book has been a labor of love, one born of necessity and certainly one that aims to help those with ALS, their families, and their friends. ALS symptoms, signs, stages, types, diagnosis, treatment, caregiver tips, aids and what to expect is all covered. Including chapters about financial considerations, famous people with Lou Gehrig Disease and resources. The book is written in an easy to read and understandable style and contains tips for caregivers.
Download or read book More Love Less Fear written by Robert and published by Balboa Press. This book was released on 2015-02-06 with total page 207 pages. Available in PDF, EPUB and Kindle. Book excerpt: The despair that befalls a family when one of its own is forever changed by illness or tragedy is an experience we can only hope to escape. A serious accident, stroke, terminal illness, or more can cause stress and sorrow that are often unbearable. But we dont get to choose from a menu of life lessons. We simply wake up one day to them sitting on our plate. The question then becomes: What do you do? Daybreak jogs, PTA meetings, church choir rehearsals, laughter, and family timethese were the basic ingredients of Robert and Theresa Lees life together. Then, at age forty-three, Theresa was diagnosed with ALS. With raw honesty and grace, Robert chronicles the inspiring story of his late wifes twelve-year dance with the disease, his role as her caregiver, and the highs and lows ALS took their marriage through. A touching memoir filled with moments of lightheartedness, wisdom and simple humanity, readers will be uplifted by this brave couples tale of unconditional love and their ultimate message: You are not alone. Life is a never-ending teacher of lessons. The question is, Are we paying attention? In 2002, my life, which all along had been filled with many of these blessings-lessonsor blessons as I called thempresented the greatest challenge my family and I would have to face yet. Robert Lee, author
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 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 Amyotrophic Lateral Sclerosis written by Hiroshi Mitsumoto and published by F. A. Davis Company. This book was released on 1998 with total page 520 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume provides comprehensive background for understanding amyotrophic lateral sclerosis (ALS) and a critical review of research. It points out the distinguishing characteristics of the disease and testing procedures for reliable diagnosis.
Download or read book The Last Leaves Falling written by Fox Benwell and published by Simon and Schuster. This book was released on 2015 with total page 17 pages. Available in PDF, EPUB and Kindle. Book excerpt: In Japan, teenaged Abe Sora, who is afflicted with "Lou Gehrig's Disease," finds friends online and elicits their help to end his suffering.
Download or read book ALS written by Eliot H. Dunsky and published by Createspace Independent Publishing Platform. This book was released on 2016-11-04 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Eliot H. Dunsky, MD, is a retired physician who since his diagnosis in 2009 has been living with ALS, the complex, progressively debilitating disorder commonly known as Lou Gehrig's disease. Determined to maintain the best quality of life possible-for as long as possible-he extensively researched the condition and its management. As he immersed himself, talking to ALS patients and exploring emerging assistive technologies and aids, he realized that misunderstanding of this complicated disease was rife, preventing many from making the most of the precious years left. The result is this compilation of not only his personal experiences as his own condition advanced but also current research and links to additional specialized resources. Its aim is to help other patients learn to live with their diagnosis and navigate the day-to-day struggles associated with it. Appropriate symptom management can help fend off the devastating effects of the disease for a longer period of time. ALS: An Orientation offers a practical guide for patients and their families on maximizing quality of life through strategic care and, importantly, coping with the emotional toll the disease can take. A terminal diagnosis simply means savoring to the fullest the life that is still possible.
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 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 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 Spy of the First Person written by Sam Shepard and published by Vintage. This book was released on 2017-12-05 with total page 97 pages. Available in PDF, EPUB and Kindle. Book excerpt: The final work from the Pulitzer Prize–winning writer, actor, and musician, drawn from his transformative last days In searing, beautiful prose, Sam Shepard’s extraordinary narrative leaps off the page with its immediacy and power. It tells in a brilliant braid of voices the story of an unnamed narrator who traces, before our rapt eyes, his memories of work, adventure, and travel as he undergoes medical tests and treatments for a condition that is rendering him more and more dependent on the loved ones who are caring for him. The narrator’s memories and preoccupations often echo those of our current moment—for here are stories of immigration and community, inclusion and exclusion, suspicion and trust. But at the book’s core, and his, is family—his relationships with those he loved, and with the natural world around him. Vivid, haunting, and deeply moving, Spy of the First Person takes us from the sculpted gardens of a renowned clinic in Arizona to the blue waters surrounding Alcatraz, from a New Mexico border town to a condemned building on New York City’s Avenue C. It is an unflinching expression of the vulnerabilities that make us human—and an unbound celebration of family and life.
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 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 Tales from the Bed written by Jenifer Estess and published by Simon and Schuster. This book was released on 2007-11-01 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: Jenifer Estess is a woman on the verge: She's about to launch her own company; she's looking buff and dating vigorously; she's driving in the fast lane -- with the top down. At the age of thirty-five, Jenifer dreams of falling in love and starting a family. Then she notices muscle twitches in her legs. Walking down a city block feels exhausting. At first, doctors write off Jenifer's symptoms to stress, but she is quickly diagnosed with ALS, a fatal brain disease that is absolutely untreatable. Max out your credit cards and see Paris, suggests one doctor. Instead of preparing to die, Jenifer gets busy. She dreams deeper, works harder, and loves endlessly. For Jenifer, being fatally ill is not about letting go. It's about holding on and reaching -- for family, friends, goals. Jenifer's girlhood pact with her sisters Valerie and Meredith -- nothing will ever break us apart -- guides them as Jenifer faces down one of the most devastating illnesses known to humankind. That same enduring pact inspires the creation of Project A.L.S., a movement started by the sisters that changes the way science and medicine approach research for ALS and the related diseases Parkinson's and Alzheimer's, and which has already raised more than $18 million. Will Project A.L.S. help scientists discover medicine in time for her? Jenifer answers these questions and others in this beautifully written and wholly inspiring memoir that celebrates a life fuelled by memory. Tales from the Bed forces us to reconsider society's notion of "having it all," and illustrates, more than anything, the importance of endurance, hope, and, most of all, love.
