Palliative Care in Amyotrophic Lateral Sclerosis


Book Description

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.




Lou Gehrig Disease, Als Or Amyotrophic Lateral Sclerosis Explained. Als Symptoms, Signs, Stages, Types, Diagnosis, Treatment, Caregiver Tips, Aids And


Book Description

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.




Navigating Life with Amyotrophic Lateral Sclerosis


Book Description

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.




What You Need to Know about ALS


Book Description

This book offers an accessibly written introduction to ALS, focusing on the topics that matter most to anyone whose life has been affected—directly or indirectly—by this condition. Amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease, is a neurodegenerative disease that affects the motor neurons that drive voluntary movement. Those diagnosed with ALS experience difficulty moving and speaking and, as the condition worsens, difficulty swallowing and breathing. Beyond this definition, however, what do those affected by ALS need to know? What You Need to Know about ALS is a part of Greenwood's Inside Diseases and Disorders series. This series profiles a variety of physical and psychological conditions, and distills vast collections of scientific knowledge into concise, readable volumes. A list of "Top 10" essential questions begins each book, providing quick-access answers to readers' concerns. The text follows a standardized structure, with each chapter exploring a particular facet of the topic. In addition to covering causes, signs and symptoms, diagnosis, and treatment options, books in this series delve into issues that are less commonly addressed but still critical to understand, such as effects on loved ones and caregivers. Case illustrations highlight key themes discussed in the book and are accompanied by insightful analyses and recommendations.




Dying Well


Book Description

From Ira Byock, prominent palliative care physician and expert in end of life decisions, a lesson in Dying Well. Nobody should have to die in pain. Nobody should have to die alone. This is Ira Byock's dream, and he is dedicating his life to making it come true. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning. Ira Byock is also the author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.




The End-of-Life Handbook


Book Description

This book address both the emotional and psychological issues associated with death and dying and the practical and medical realities typically dealt with at this time-unusual among titles in this subject area. The authors, a psychologist and medical doctor, are passionate advocates for quality end-of-life care. Author Feldman's background in positive psychology brings an emphasis on hope, inspiration, meaning, and human connection at the end of life to the book. As medical technology progresses and life expectancies edge upward, families are being faced with ever-more-complicated choices as loved ones approach their final hours. This book offers readers much-needed guidance and support for making these often difficult decisions.




The Deanna Protocol


Book Description

The authors are in a life and death struggle against a terrible disease, Amyotrophic Lateral Sclerosis, which is referred to as ALS or Lou Gehrig's disease. If you or a loved one have been diagnosed with ALS, then you need to read this book. The Deanna Protocol® program was discovered by Dr. Tedone, Deanna's father, only after failing, again and again, with everything that he tried. The massage, non-exhausting exercise and core supplements, which are inexpensive and available without prescription from many suppliers. The program works for many ALS patients. It is not a cure, however, it provides a better quality of life and has been shown in ALS mice to extend life and improve motor skills. The rate of progression of ALS symptoms reported in ALSFRS scores, is markedly reduced in those adhering to the Deanna Protocol® program. There a few side effects reported, and those are manageable for most, if the program is phased in, gradually, over time.




Handbook for Mortals


Book Description

Rev. ed. of: Handbook for mortals / Joanne Lynn, Joan Harrold, and the Center to Improve Care of the Dying, George Washington University. 1999.




Biometals in Neurodegenerative Diseases


Book Description

Biometals in Neurodegenerative Diseases: Mechanisms and Therapeutics is an authoritative and timely resource bringing together the major findings in the field for ease of access to those working in the field or with an interest in metals and their role in brain function, disease, and as therapeutic targets. Chapters cover metals in Alzheimer's Disease, Parkinson's Disease, Motor Neuron Disease, Autism and lysosomal storage disorders. This book is written for academic researchers, clinicians and advanced graduate students studying or treating patients in neurodegeneration, neurochemistry, neurology and neurotoxicology. The scientific literature in this field is advancing rapidly, with approximately 300 publications per year adding to our knowledge of how biometals contribute to neurodegenerative diseases. Despite this rapid increase in our understanding of biometals in brain disease, the fields of biomedicine and neuroscience have often overlooked this information. The need to bring the research on biometals in neurodegeneration to the forefront of biomedical research is essential in order to understand neurodegenerative disease processes and develop effective therapeutics. - Authoritative and timely resource bringing together the major findings in the field for those with an interest in metals and their role in the brain function, disease, and as therapeutic targets - Written for academic researchers, clinicians, and advanced graduate students studying, or treating, patients in neurodegeneration, neurochemistry, neurology and neurotoxicology - Edited by international leaders in the field who have contributed greatly to the study of metals in neurodegenerative diseases




Until I Say Good-Bye


Book Description

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.