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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.
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, a disease that affects approximately 5,600 Americans every year, with as many as 30,000 people managing the disease at any given time. ALS is a difficult disease for the patient and is also challenging for the caregiver and family as there are many questions, issues relating to care, and problems to manage. 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. Navigating Life with Amyotrophic Lateral Sclerosis is unique because it covers two perspectives: one author is a neurologist with 30 years of experience treating ALS patients, and the other author experienced first-hand the issues in providing care for a parent with ALS. 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.
"Since you have opened this book, you or a close friend or family member have likely been impacted by the upsetting and frightening diagnosis of dementia. You may have been told about this diagnosis in a number of different ways. Either the term dementia was used, or other words associated with or more specific than dementia, such as Alzheimer's disease, vascular dementia, Lewy Body disease, frontotemporal dementia, or Pick's disease, were used. You may even have been misinformed at first and told that you were simply facing the normal changes of aging, such as forgetfulness or mild depression. Sometimes these terms are relatable based on others we know who have been affected by them. But they can be shocking to hear and hard to understand when talking about yourself or a loved one. Even more difficult is that none of the most common forms of dementia currently have treatments that can cure or slow the disease"--
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.
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.
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).
Navigating Life with a Brain Tumor is a guide for anyone affected by brain tumors and their associated conditions-patients, family members, friends, and caregivers. Providing readily accessible information and real-world encouragement to people living with primary and metastatic brain tumors and their caregivers, this book discusses the basics of brain tumors, types of tumors, management of different tumors, related symptoms, treatments and side effects, the role of medical team members, and coping strategies from initial diagnosis throughout the course of the illness. At the same time, it also offers practical suggestions on symptom management and lifestyle modification, as well as real-life anecdotes and advice from both patients and family members and friends who are experiencing this diagnosis.
Navigating Life with Chronic Pain provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by chronic pain, showing that no two pain experiences are the same. The authors expertly guide the reader through current approaches, to diagnoses including a review of diagnostic tests, and discuss a comprehensive, integrated approach to chronic pain treatment. Through the use of patient stories, you get real-world experiences and advice on navigating the day-to-day challenges, associated with chronic pain like exercising and nutrition, using non-opioid drugs, deciding when surgery is the best option, how to maintain intimacy with a partner, and how to manage caregiver burnout.
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.