Download or read book Learning to Live with Huntington s Disease written by Sandy Sulaiman and published by Jessica Kingsley Publishers. This book was released on 2007 with total page 178 pages. Available in PDF, EPUB and Kindle. Book excerpt: Huntington's Disease (HD), is a hereditary illness passed on via a defective gene. This book offers one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. It also presents the struggles and strengths of the whole family when one member loses their future to a terminal illness.

Download or read book Patient 1 written by Charlotte Raven and published by Jonathan Cape. This book was released on 2021-11-04 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Charlotte Raven had never heard of Huntington's Disease when, in her mid-thirties, she discovered that her father was suffering from the illness. Life for her and her young family would never be the same again. Patient 1 is her brutally candid account of coming to terms with this inherited neurodegenerative disease, which can manifest at any time in life for people who carry the faulty gene. As the illness began to take hold of Raven's body, mind and memory, she began to write. She wrote like her life depended on it -- and in many ways she believed it did. Frank and fearless, Patient 1 is an act of self-preservation and a kind of reckoning -- with the illness, with the person she once was, with the person she is now. In an afterword, Raven's doctor Ed Wild explains how doctors and patients like Charlotte are working together in the hope of one day eliminating this disease altogether.

Download or read book Can You Help Me written by Thomas D. Bird and published by Oxford University Press, USA. This book was released on 2019 with total page 289 pages. Available in PDF, EPUB and Kindle. Book excerpt: Can You Help Me?: Living in the Turbulent World of Huntington Disease shares the surprising, insightful, challenging, and even encouraging stories of patients and their families who live with Huntington Disease. Having seen patients for more than 40 years, Dr Thomas Bird, a pioneer neurogeneticist, adds a human touch to this genetic brain disease that devastates persons during mid-life when they can least afford it. With a brief history of Huntington Disease and the occasional scientific detail, the true heart of the book is the human experience of the disorder: � The man who cannot stay out of prison because he is addicted to being a burglar. � Another man shoots and kills his roommate while watching television and cannot explain why he did it. � The woman with Huntington Disease copes with her depression by using Texas line dancing. � A twelve year old girl with juvenile Huntington Disease who can barely walk and talk, but her classmates rally around with touching and heartfelt support. � And the 72 year old man with late onset Huntington Disease and severe depression is made worse by ECT, but improved (for a while) with Transcranial Magnetic Stimulation. These are just some of the compelling stories of people of all ages and in all walks of life who feel trapped by a progressive degenerative brain disease from which there is no escape.

Download or read book In Between Years Life After a Positive Huntington s Disease Test written by Steven Beatty and published by Library and Archives Canada. This book was released on 2018-04-14 with total page 116 pages. Available in PDF, EPUB and Kindle. Book excerpt: All proceeds from the sale of this book are going to the Huntington Society of Canada for research and family support services! ---- This book is for those of us going through the "in-between years": the years following our HD genetic testing, but before the symptoms of the illness have begun to take hold. The years when we may struggle with this look into the crystal ball we've been given, for whatever reasons are personal to us. The years when we symptom-hunt and worry about every forgotten purse and each trip and stumble. The years when we watch and care for other Huntington's disease affected loved ones and wonder, how long until it's our turn. ---- Excerpt from the book: "It's not the result we were hoping for." Those eight little words echoed in my head like a Mack Truck rolling through a tunnel. A Mack Truck in the form of a telephone call from a Genetic Counsellor at my local hospital. "What, me?", was my gasped response. "Yes," she replied, "I'm sorry." I sat there in total stunned silence and started to think about all the consequences related to what she had just told me. What this news would mean for my family and me, possibly for generations to come. That was the moment my life completely changed. Changed in pretty much almost every conceivable way. How I looked to the future. How I reflected on the past. How I coped with the present. It changed what I found to be important and what I saw not even to be worth my time. It was the day I found out I was positive for the gene mutation that's responsible for Huntington's disease. The disease that I've heard some resources refer to as "one of the worst diseases you can get" and "it's like having Alzheimer's, ALS and Parkinson's disease all at the same time!" Where was I to go from there? What was I supposed to do? How could I cope with the knowledge that, unless a sufficient treatment came along soon, this disease was going to kill me in the not too distant future? I had no idea what to do next, and I felt utterly alone. ---- Chapters in this book include: 1. Steve's Huntington's Disease Story 2. What Is Huntington's Disease? 3. What Does My CAG Number Tell Me? 4. Becoming Involved with Huntington's Disease Associations 5. Your Health Care Team 6. Participating in Research 7. Symptom Seeking 8. Fear 9. When Do I Tell People About My Huntington's Disease? 10. Anger 11. Making Babies 12. Staying Positive 13. Exercise 14. Caring 15. Guilt 16. Journaling 17. Planning Ahead 18. Following the Latest Developments in Huntington's Disease News 19. Is Huntington's Disease Genetic Testing Even Worth the Trouble? 20. When Symptoms Start 21. I Look Forward to The Day When There Won't Be A Need for This Book 22. Calls to Action ---- What is Huntington's Disease?: Huntington's disease is a neurodegenerative disease that affects parts of the brain and leads to behavioural, cognitive and movement disorder symptoms. HD is caused by a mutation in a specific gene, now known as the Huntington gene. Huntington's disease is tragic in that it affects people in their prime. Symptoms often begin between the ages of 30- to 50-years-old. Currently, there is no cure for HD and once those affected become symptomatic, death usually occurs in 10-15 years. ---- About the author: Steven Beatty is part of a Huntington's disease family himself and received a positive result on his HD predictive genetic testing in 2015. Since that time, he has developed a passion directed at advocating for the Huntington's disease community. ---- The Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease

Download or read book Living with Huntington s Disease written by Dennis H. Phillips and published by . This book was released on 1982 with total page 258 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book Huntington s Chorea written by M.R. Hayden and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 333 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book A Physician s Guide to the Management of Huntington s Disease written by Adam Rosenblatt and published by . This book was released on 1999-01-01 with total page 85 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book Inside the O Briens written by Lisa Genova and published by Simon and Schuster. This book was released on 2015-04-07 with total page 368 pages. Available in PDF, EPUB and Kindle. Book excerpt: A New York Times bestseller ▪ A Library Journal Best Books of 2015 Pick ▪ A St. Louis Post-Dispatch Best Books of 2015 Pick ▪A GoodReads Top Ten Fiction Book of 2015 ▪ A People Magazine Great Read From New York Times bestselling author and neuroscientist Lisa Genova comes a “heartbreaking…very human novel” (Matthew Thomas, author of We Are Not Ourselves) that does for Huntington’s disease what her debut novel Still Alice did for Alzheimer’s. Joe O’Brien is a forty-three-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s disease. Huntington’s is a lethal neurodegenerative disease with no treatment and no cure, and each of Joe’s four children has a 50 percent chance of inheriting their father’s disease. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate. Praised for writing that “explores the resilience of the human spirit” (San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.

Download or read book Just Move Forward written by Susan E. Lawrence and published by America Star Books. This book was released on 2011-09-01 with total page 140 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Susan E. Lawrence shares her experiences on a personal level about her journey in living with Huntington's disease and delivers a powerful message of hope to help other families identify with the simple truths about living with HD." -- cover.

Download or read book The Woman Who Walked into the Sea written by Alice Wexler and published by Yale University Press. This book was released on 2008-09-30 with total page 277 pages. Available in PDF, EPUB and Kindle. Book excerpt: A groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as “the witchcraft disease” When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington’s chorea, and today it is known as Huntington's disease. This book is the first history of Huntington’s in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to “belong to the disease”; the emergence of Huntington’s chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.

Download or read book To Love and Help written by Denise Waide and published by Author House. This book was released on 2014 with total page 119 pages. Available in PDF, EPUB and Kindle. Book excerpt: Denise Waide is a professional lady who works hard day and by night, but under all her smiles and bubbly personality, she hides a dark secret. Her health remains under a strict balance on a daily basis. Her secret has taken its toll on her life and her family and the special bond between her and her identical twin sister. Denise Waide has run far away to greener pastures to look for piece and tranquility. Huntington's disease is a neurological degenerative condition that affects the motor neuron and the brain. This book is based on a true story.

Download or read book Living with Huntington s Disease Challenges Perspectives and Quality of Life written by Sherman Howell and published by . This book was released on 2020-03-16 with total page 156 pages. Available in PDF, EPUB and Kindle. Book excerpt: The book first discusses the variety of sleep disorders in Huntington's Disease, as well as how sleep quality can be associated with other important clinical symptoms. Although Huntington's disease is categorized as a movement disorder, the wide range of non-motor symptoms including cognitive impairment and behavioral abnormalities are considered by patients and their caregivers to be just as disabling as the motor symptoms. As such, the authors explore the importance of symptomatic treatment of Huntington's disease-related symptoms. Following this, the emotional and communicational issues in Huntington's disease and their interrelations are examined, including depressive symptomatology, anxiety, helplessness or anger, as well as verbal and non-verbal communication and assistive technology. Lastly, the authors describe current trends and efforts in gene therapy techniques and the improvements in health conditions of Huntington's disease patients and their families.

Download or read book Understanding Behavior in Huntington s Disease written by Jane S. Paulsen and published by . This book was released on 1999-01-01 with total page 46 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book On a High Wire Without a Net written by Susan E. Lawrence and published by Publishamerica Incorporated. This book was released on 2009-10 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: Susan Lawrence is one of 10 children in a family with more than 44 direct family members aat riska for Huntingtonas disease. In a routine doctoras visit she was informed that she was negative for HD. But, after seeing her genetic results, she realized that she was wrongly tested for Alzheimeras. If she had relied on a verbal consultation, Susan would not be aware that she is now living with a debilitating disease with no cure. Today, more than a quarter of a million Americans have HD or are aat riska of inheriting the disease from a parent. Family members have a 50/50 chance of having the disease when one or both parents have tested positive. Susan began writing therapeutically and now shares her experiences and knowledge of HD openly to help others find a way to keep hope in the forefront of an ongoing battle to find a cure.

Download or read book Living with Huntington s Disease written by Dennis H. Phillips and published by . This book was released on with total page 251 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book Faces of Huntington s written by Carmen Leal-Pock and published by Belleville, Ont. : Essence Pub.. This book was released on 1998 with total page 363 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book Learning to Live with Huntington s Disease written by Sandy Sulaiman and published by Jessica Kingsley Publishers. This book was released on 2007-04-15 with total page 178 pages. Available in PDF, EPUB and Kindle. Book excerpt: Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not. Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.