A Family Disease


Book Description

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.




Your Child with Inflammatory Bowel Disease


Book Description

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.




Families Caring for an Aging America


Book Description

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.




McWhinney's Textbook of Family Medicine


Book Description

'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.




Hidden Valley Road


Book Description

#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.




Parkinson's Disease and the Family


Book Description

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.




The Inheritance


Book Description

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.




Recovering My Kid


Book Description

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.




Parkinson's Disease


Book Description

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




The Urge


Book Description

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.