Download or read book A Family Disease written by Dana Lorene Creighton and published by McFarland. This book was released on 2021-01-11 with total page 203 pages. Available in PDF, EPUB and Kindle. Book excerpt: Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate. Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma. Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.

Download or read book Your Child with Inflammatory Bowel Disease written by North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and published by JHU Press. This book was released on 2010-06-10 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: When a child has inflammatory bowel disease, the family has many concerns: Why is my child sick? What can we do to help him get better? What does the future hold for her? In this book, an expert team of pediatric gastroenterologists explains the symptoms, diagnoses, and treatments associated with Crohn disease, ulcerative colitis, and indeterminate colitis to help parents and children cope with the challenges of IBD. The authors' empathy and experience are evident throughout as they answer such questions as: • What are inflammatory bowel disease, Crohn disease, and ulcerative colitis?• Is there a cure for IBD?• How is IBD going to affect my child's daily life?• Will my child's diet change?• Can my child still play sports?• Will my child need surgery?• What are the side effects of commonly prescribed medications? The book also provides parents with practical advice on how to tell their children about their IBD and discusses the challenges children may face at school and in their social lives, especially as they grow older. Additional information on IBD medications, complementary treatments, and further reading round out this comprehensive and reliable resource.

Download or read book McWhinney s Textbook of Family Medicine written by Thomas Freeman and published by Oxford University Press. This book was released on 2016 with total page 537 pages. Available in PDF, EPUB and Kindle. Book excerpt: 'McWhinney's Textbook of Family Medicine' is one of the seminal texts in the field, defining the principles and practices of family medicine as a distinct field of practice. The fourth edition presents six new clinical chapters of common problems in family medicine.

Download or read book Families Caring for an Aging America written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-12-08 with total page 367 pages. Available in PDF, EPUB and Kindle. Book excerpt: Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

Download or read book Parkinson s Disease and the Family written by Nutan Sharma and published by Harvard University Press. This book was released on 2009-06-30 with total page 233 pages. Available in PDF, EPUB and Kindle. Book excerpt: Too often, with Parkinson's disease, a loved one serves as medical interpreter, patient advocate, and caregiver. Sharma and Richman draw on the latest research and clinical practice techniques to offer valuable suggestions for managing patient care and, perhaps more important, for healing the family unit.

Download or read book Hidden Valley Road written by Robert Kolker and published by Anchor. This book was released on 2020-04-07 with total page 427 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • OPRAH’S BOOK CLUB PICK • ONE OF GQ's TOP 50 BOOKS OF LITERARY JOURNALISM IN THE 21st CENTURY • The heartrending story of a midcentury American family with twelve children, six of them diagnosed with schizophrenia, that became science's great hope in the quest to understand the disease. "Reads like a medical detective journey and sheds light on a topic so many of us face: mental illness." —Oprah Winfrey Don and Mimi Galvin seemed to be living the American dream. After World War II, Don's work with the Air Force brought them to Colorado, where their twelve children perfectly spanned the baby boom: the oldest born in 1945, the youngest in 1965. In those years, there was an established script for a family like the Galvins--aspiration, hard work, upward mobility, domestic harmony--and they worked hard to play their parts. But behind the scenes was a different story: psychological breakdown, sudden shocking violence, hidden abuse. By the mid-1970s, six of the ten Galvin boys, one after another, were diagnosed as schizophrenic. How could all this happen to one family? What took place inside the house on Hidden Valley Road was so extraordinary that the Galvins became one of the first families to be studied by the National Institute of Mental Health. Their story offers a shadow history of the science of schizophrenia, from the era of institutionalization, lobotomy, and the schizophrenogenic mother to the search for genetic markers for the disease, always amid profound disagreements about the nature of the illness itself. And unbeknownst to the Galvins, samples of their DNA informed decades of genetic research that continues today, offering paths to treatment, prediction, and even eradication of the disease for future generations. With clarity and compassion, bestselling and award-winning author Robert Kolker uncovers one family's unforgettable legacy of suffering, love, and hope.

Download or read book The Inheritance written by Niki Kapsambelis and published by Simon and Schuster. This book was released on 2017-03-07 with total page 407 pages. Available in PDF, EPUB and Kindle. Book excerpt: This gripping story of the doctors at the forefront of Alzheimer’s research and the courageous North Dakota family whose rare genetic code is helping to understand our most feared diseases is “excellent, accessible...A science text that reads like a mystery and treats its subjects with humanity and sympathy” (Library Journal, starred review). Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can. The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in one hundred percent of cases, and has a fifty percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, daughter Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure. Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. “A compelling narrative…and an educational and emotional chronicle” (Kirkus Reviews, starred review), their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this inspiring race against time redefines courage in the face of this most pervasive and mysterious disease.

Download or read book Recovering My Kid written by Joseph Lee and published by Simon and Schuster. This book was released on 2012-11-01 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt: National expert Dr. Joseph Lee explains the nature of youth addiction and treatment, and how families can create a safe and supportive environment for their loved ones during treatment and throughout their recovery. Raising a child is tough as it is, but when your kid becomes addicted to alcohol or other drugs, it can feel as if you’re living a nightmare. You’re not alone. In Recovering My Kid, Dr. Joseph Lee, a leading youth addiction specialist, takes worried, confused, and angry parents by the hand and addresses their most pressing questions and fears: What is addiction? What happens when my child returns home from treatment? How can my family support his or her recovery? What if my child relapses? How can my family get well again?Getting your child and your family well again requires the support and understanding of the whole family, even if feelings and trust were damaged. In his engaging and straightforward style, Lee explains the difficult concepts of addiction, treatment, and recovery in a way parents and families can understand and gives them concrete strategies they can put into practice.This book will help family members begin to understand what their loved one is going through and how they can help the addict adjust to a clean-and-sober life while still taking care of themselves.

Download or read book Parkinson s Disease written by William J. Weiner and published by JHU Press. This book was released on 2006-11-13 with total page 291 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent innovations, including deep brain stimulation and new medications, have significantly improved the lives of people with Parkinson’s disease. Nevertheless, medical, emotional, and physical challenges remain. The second edition of this accessible and comprehensive guide provides crucial information for managing this complex condition, including details on the use of medications, diet, exercise, complementary therapies, and surgery. The second edition includes new information about: • The genetic and hereditary pattern of the disease • Medications and uses of established medications • Other approaches to treating the symptoms of Parkinson’s • Juvenile-onset Parkinson’s disease • Normal pressure hydrocephalus • The effects of fluctuating hormones on disease symptoms • Fetal cell transplants and porcine cell transplants • The nutritional supplement Co-Enzyme Q10

Download or read book The 36 Hour Day written by Nancy L. Mace and published by JHU Press. This book was released on 2021-08-10 with total page 361 pages. Available in PDF, EPUB and Kindle. Book excerpt: The 36-Hour Day is the definitive dementia care guide.

Download or read book The Urge written by Carl Erik Fisher and published by Penguin. This book was released on 2022-01-25 with total page 393 pages. Available in PDF, EPUB and Kindle. Book excerpt: Named a Best Book of the Year by The New Yorker and The Boston Globe An authoritative, illuminating, and deeply humane history of addiction—a phenomenon that remains baffling and deeply misunderstood despite having touched countless lives—by an addiction psychiatrist striving to understand his own family and himself “Carl Erik Fisher’s The Urge is the best-written and most incisive book I’ve read on the history of addiction. In the midst of an overdose crisis that grows worse by the hour and has vexed America for centuries, Fisher has given us the best prescription of all: understanding. He seamlessly blends a gripping historical narrative with memoir that doesn’t self-aggrandize; the result is a full-throated argument against blaming people with substance use disorder. The Urge is a propulsive tour de force that is as healing as it is enjoyable to read.” —Beth Macy, author of Dopesick Even after a decades-long opioid overdose crisis, intense controversy still rages over the fundamental nature of addiction and the best way to treat it. With uncommon empathy and erudition, Carl Erik Fisher draws on his own experience as a clinician, researcher, and alcoholic in recovery as he traces the history of a phenomenon that, centuries on, we hardly appear closer to understanding—let alone addressing effectively. As a psychiatrist-in-training fresh from medical school, Fisher was soon face-to-face with his own addiction crisis, one that nearly cost him everything. Desperate to make sense of the condition that had plagued his family for generations, he turned to the history of addiction, learning that the current quagmire is only the latest iteration of a centuries-old story: humans have struggled to define, treat, and control addictive behavior for most of recorded history, including well before the advent of modern science and medicine. A rich, sweeping account that probes not only medicine and science but also literature, religion, philosophy, and public policy, The Urge illuminates the extent to which the story of addiction has persistently reflected broader questions of what it means to be human and care for one another. Fisher introduces us to the people who have endeavored to address this complex condition through the ages: physicians and politicians, activists and artists, researchers and writers, and of course the legions of people who have struggled with their own addictions. He also examines the treatments and strategies that have produced hope and relief for many people with addiction, himself included. Only by reckoning with our history of addiction, he argues—our successes and our failures—can we light the way forward for those whose lives remain threatened by its hold. The Urge is at once an eye-opening history of ideas, a riveting personal story of addiction and recovery, and a clinician’s urgent call for a more expansive, nuanced, and compassionate view of one of society’s most intractable challenges.

Download or read book Ending Discrimination Against People with Mental and Substance Use Disorders written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-09-03 with total page 171 pages. Available in PDF, EPUB and Kindle. Book excerpt: Estimates indicate that as many as 1 in 4 Americans will experience a mental health problem or will misuse alcohol or drugs in their lifetimes. These disorders are among the most highly stigmatized health conditions in the United States, and they remain barriers to full participation in society in areas as basic as education, housing, and employment. Improving the lives of people with mental health and substance abuse disorders has been a priority in the United States for more than 50 years. The Community Mental Health Act of 1963 is considered a major turning point in America's efforts to improve behavioral healthcare. It ushered in an era of optimism and hope and laid the groundwork for the consumer movement and new models of recovery. The consumer movement gave voice to people with mental and substance use disorders and brought their perspectives and experience into national discussions about mental health. However over the same 50-year period, positive change in American public attitudes and beliefs about mental and substance use disorders has lagged behind these advances. Stigma is a complex social phenomenon based on a relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person with that attribute. Labeled individuals are then socially devalued, which leads to inequality and discrimination. This report contributes to national efforts to understand and change attitudes, beliefs and behaviors that can lead to stigma and discrimination. Changing stigma in a lasting way will require coordinated efforts, which are based on the best possible evidence, supported at the national level with multiyear funding, and planned and implemented by an effective coalition of representative stakeholders. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change explores stigma and discrimination faced by individuals with mental or substance use disorders and recommends effective strategies for reducing stigma and encouraging people to seek treatment and other supportive services. It offers a set of conclusions and recommendations about successful stigma change strategies and the research needed to inform and evaluate these efforts in the United States.

Download or read book Heart Warriors written by Amanda Adams and published by Behler Publications. This book was released on 2012-06-12 with total page 323 pages. Available in PDF, EPUB and Kindle. Book excerpt: A family conquers grief and lost expectations raising their son born with half a heart, while navigating complex medical challenges.

Download or read book Mercies in Disguise written by Gina Kolata and published by Macmillan + ORM. This book was released on 2017-03-21 with total page 217 pages. Available in PDF, EPUB and Kindle. Book excerpt: "[Kolata] is a gifted storyteller. Her account of the Baxleys... is both engrossing and distressing... Kolata's book raises crucial questions about knowledge that can be both vital and fatal, both pallative and dangerous." —Andrew Solomon, The New York Review of Books New York Times science reporter Gina Kolata follows a family through genetic illness and one courageous daughter who decides her fate shall no longer be decided by a genetic flaw. The phone rings. The doctor from California is on the line. “Are you ready Amanda?” The two people Amanda Baxley loves the most had begged her not to be tested—at least, not now. But she had to find out. If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible? In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution—not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma—fertility specialists had created a way to spare the children through an expensive process. A work of narrative nonfiction, Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman—Amanda Baxley—who faced the future head on, determined to find a way to disrupt her family’s destiny.

Download or read book Patient Safety and Quality written by Ronda Hughes and published by Department of Health and Human Services. This book was released on 2008 with total page 592 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Nurses play a vital role in improving the safety and quality of patient car -- not only in the hospital or ambulatory treatment facility, but also of community-based care and the care performed by family members. Nurses need know what proven techniques and interventions they can use to enhance patient outcomes. To address this need, the Agency for Healthcare Research and Quality (AHRQ), with additional funding from the Robert Wood Johnson Foundation, has prepared this comprehensive, 1,400-page, handbook for nurses on patient safety and quality -- Patient Safety and Quality: An Evidence-Based Handbook for Nurses. (AHRQ Publication No. 08-0043)." - online AHRQ blurb, http://www.ahrq.gov/qual/nurseshdbk/

Download or read book It Will Never Happen to Me written by Claudia Black, Ph.D and published by Ballantine Books. This book was released on 1987-09-12 with total page 226 pages. Available in PDF, EPUB and Kindle. Book excerpt: This "little green book," as it has come to be known to hundreds of thousands of C.O.A.'s and A.C.O.A.'s, is meant to help the reader understand the roles children in alcoholic families adopt, the problems they face in adulthood as a result, and what they can do to break the pattern of destruction.

Download or read book Wilson s Disease for the Patient and Family written by George J. Brewer and published by Xlibris Corporation. This book was released on 2002-04-09 with total page 154 pages. Available in PDF, EPUB and Kindle. Book excerpt: Wilsons Disease for the Patient and Family: A Patients Guide to Wilsons disease and Frequently asked Questions about Copper, is an essential reference book for patients with Wilsons disease and their families. In easy-to-understand language, Dr. Brewer, a world authority on Wilsons disease and copper, explains everything about Wilsons disease, from its genetic cause and mechanism of transmission, to effective treatment plans. A comprehensive glossary provides readers with definitions and explanations for many of the scientific words and phrases used in the text. Major reasons why this book is important to patients relate to the rarity of the disease, variation in its manner of presentation, and the likelihood that doctors consulted about the medical problems will know very little about Wilsons disease. Most doctors, even specialists in liver disease or neurology, will see at most one or two cases during their entire medical careers. If patients hope for rapid and early diagnosis, and that is important to preserve as much function as possible, they may need to help the doctor think of the disease in the first place, and help in sorting out what constitutes proper diagnosis. And then, if there is a diagnosis, comes treatment. The days are gone when one drug, penicillamine (the only anticopper drug most doctors have heard of), is prescribed as soon as the diagnosis is made. Now we have different therapies for different stages. In fact, we no longer recommend penicillamine for Wilsons disease at all. This book will guide the patient and family through all of these various aspects of Wilsons disease. Dr. Brewer begins by describing Wilsons disease, what causes it, how it is inherited, and what symptoms people with Wilsons disease exhibit. It is an inherited disorder of copper accumulation and toxicity, affecting one in 40,000 people worldwide. After basic coverage of Wilsons disease, Dr. Brewer devotes an entire chapter to answering some of the most commonly asked questions about copper. Many of these questions are unrelated to Wilsons disease, but are questions frequently asked by other types of patients as they are informed that there is something wrong with their copper. After that, Dr. Brewer explores the symptoms which should trigger the suspicion of Wilsons disease, and what screening tests can be done to explore this possibility. He then covers testing which will give a definitive diagnosis, what the results of different tests mean, and some of the possible problems with various tests which might be performed. Once a reliable diagnosis of Wilsons disease is made, anticopper therapy is essential to the survival of Wilsons disease patients. Dr. Brewer explains what drugs are available for treatment of Wilsons disease, and offers a comparison of their benefits and side effects. He elaborates on variations in treatment, first discussing the initial stage of treatment, and then long-term maintenance therapy. Included in the discussion are tips for treatment of children and pregnant women. The risks and long-term outlook for a person diagnosed with Wilsons disease are discussed in some detail. After these information-packed chapters, Dr. Brewer devotes a chapter to answering some frequently asked questions about Wilsons disease, and presents resources available to Wilsons disease patients and their families. The book concludes as Dr. Brewer examines the current shortcomings in Wilsons disease therapy, and points to areas which might be improved upon in the future.