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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.
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.
A diagnosis of amyotrophic lateral sclerosis (also known as Lou Gehrig's disease or motor neuron disease) is a progressive neurodegenerative disorder that exerts a notorious life-shortening physical toll. Understandably, clinicians are keen to avoid a wrong diagnosis when there are such serious consequences, but any delay in diagnosis can result in unnecessary, and sometimes harmful, interventions, and prevents prompt implementation of much-needed physical and emotional support. Starting from the premise that ALS is not one disease but a syndrome, with a spectrum of upper and lower motor neuron involvement, this highly readable resource examines the causes of diagnostic delay and how to avoid them. With no diagnostic test to confirm the disease, no mandatory investigations and very few plausible 'ALS mimics', the authors take a pragmatic approach to what must always be a clinical diagnosis. With case presentations and teaching points to aid understanding, 'Fast Facts: ALS' will give clinicians the confidence to confirm or exclude a diagnosis of ALS, so that individuals facing this most challenging of conditions can receive rapid multidisciplinary support to maximize the quality of their remaining life. Contents: • Defining the syndrome • Epidemiology and pathophysiology • The first symptoms • Differential diagnosis • Investigations • Emerging diagnostic biomarkers
Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.
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.
The true story behind the Ice Bucket Challenge
Known for her portraits of family, friends, writers, poets, artists, students, singers, salesmen, activists, and more, Alice Neel created forthright, intimate, and, at times, humorous paintings that quietly engaged with political and social issues. In Alice Neel, Uptown, writer and curator Hilton Als brings together a body of paintings and works on paper of African-Americans, Latinos, Asians, and other people of color for the first time. Highlighting the innate diversity of Neel’s approach, the selection looks at those whose portraits are often left out of the art-historical canon and how this extraordinary painter captured them; “what fascinated her was the breadth of humanity that she encountered,” Als writes. The publication, which opens with a foreword by Jeremy Lewison, advisor to The Estate of Alice Neel, explores Neel’s interest in the diversity of uptown New York and the variety of people amongst whom she lived. This group of portraits includes well-known figures such as playwright, actress, and author Alice Childress; the sociologist Horace R. Cayton, Jr.; the community activist Mercedes Arroyo; and the widely published academic Harold Cruse; alongside more anonymous individuals of a nurse, a ballet dancer, a taxi driver, a businessman, and a local kid who ran errands for Neel. In short and illuminating texts on specific works written in his characteristic narrative style, Als writes about the history of each sitter and offers insights into Neel and her work, while adding his own perspective. A contemporary and personal approach to the artist’s oeuvre, Als’s project is “an attempt to honor not only what Neel saw, but the generosity of her seeing.” This catalogue is published on the occasion of the 2017 exhibitions of Neel’s paintings and drawings at David Zwirner, New York, and Victoria Miro, London.
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.
ALS is not a curable disease, but it is a treatable one. Treatments are now available that can make a major difference in prolonging life and enhancing the quality of life for people with the disease, and there are treatments for many of the symptoms of ALS that can help ease its burden.Multidisciplinary teams in specialized ALS centers are providing top quality care and comprehensive rehabilitation for persons with ALS. In spite of the progressive nature of this disease and its clear tendency to shorten life, the momentum of research in this disease is expanding dramatically and numerous clinical trials are testing promising new therapies. Our understanding of the basic causes of ALS is expanding gradually. The substantial resources of patient advocacy groups such as the Amyotrophic Lateral Sclerosis Association and Muscular Dystrophy Association provide tremendous help and support for people with ALS and their families. Although the diagnosis of ALS can initially be devastating, the vast majority of people discovering new courage from within to battle this disease and live life with vigor and enthusiasm. The information in this book will prove useful to people with ALS and their families both in managing the disease and living within its limitations.