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 Can You Help Me written by Thomas D. Bird and published by . 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 Watching Their Dance written by Therese Crutcher-Marin and published by Norcal Publishing Company. This book was released on 2017-03-22 with total page 312 pages. Available in PDF, EPUB and Kindle. Book excerpt: Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John's sisters announce they finally know what killed their mother, Huntington's disease. John and his three older sisters have a fifty-percent chance of inheriting Huntington's, which slowly kills the brain cells that affect movement and cognition. John says, "You never know what will happen in life," but his at-risk status shakes Therese to the core. How can she live with such uncertainty? Eventually, Therese takes the biggest gamble of her life and marries John. All four Marins choose to ignore what they cannot change; and in the early years, John and his sisters--a big part of Therese's life-- remain healthy, fun-loving, and as close as ever. When she observes symptoms in Lora, the oldest sister, Therese fears that Huntington's has found her. And when Marcia is diagnosed with the disease, Therese--with two small children, a career, and a husband now in the prime age range to show symptoms--struggles against the demons that feed her fear.When Marcia's symptoms worsen, Therese lovingly oversees her care. Several years later, Cindy, the youngest, also develops Huntington's, and Therese does the same, feeling that managing the care of these loved ones is the greatest gift she can give them.Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger, to find joy in the simple things. And though John's sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.

Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

Download or read book Genetic Twists of Fate written by Stanley Fields and published by MIT Press. This book was released on 2010-09-24 with total page 235 pages. Available in PDF, EPUB and Kindle. Book excerpt: How tiny variations in our personal DNA can determine how we look, how we behave, how we get sick, and how we get well. News stories report almost daily on the remarkable progress scientists are making in unraveling the genetic basis of disease and behavior. Meanwhile, new technologies are rapidly reducing the cost of reading someone's personal DNA (all six billion letters of it). Within the next ten years, hospitals may present parents with their newborn's complete DNA code along with her footprints and APGAR score. In Genetic Twists of Fate, distinguished geneticists Stanley Fields and Mark Johnston help us make sense of the genetic revolution that is upon us. Fields and Johnston tell real life stories that hinge on the inheritance of one tiny change rather than another in an individual's DNA: a mother wrongly accused of poisoning her young son when the true killer was a genetic disorder; the screen siren who could no longer remember her lines because of Alzheimer's disease; and the president who was treated with rat poison to prevent another heart attack. In an engaging and accessible style, Fields and Johnston explain what our personal DNA code is, how a few differences in its long list of DNA letters makes each of us unique, and how that code influences our appearance, our behavior, and our risk for such common diseases as diabetes or cancer.

Download or read book You ll Miss Me When I m Gone written by Rachel Lynn Solomon and published by Simon and Schuster. This book was released on 2018-01-02 with total page 384 pages. Available in PDF, EPUB and Kindle. Book excerpt: “Heartfelt, deeply moving.” —Buzzfeed “Dark and thought-provoking.” —Publishers Weekly “A stunning debut.” —VOYA A poignant, lyrical debut novel about twins who navigate first love, their Jewish identity, and shocking results from a genetic test that determines their fate—whether they inherited their mother’s Huntington’s disease. Eighteen-year-old twins Adina and Tovah have little in common besides their ambitious nature. Viola prodigy Adina yearns to become a soloist—and to convince her music teacher he wants her the way she wants him. Overachiever Tovah awaits her acceptance to Johns Hopkins, the first step on her path toward med school and a career as a surgeon. But one thing could wreck their carefully planned futures: a genetic test for Huntington’s, a rare degenerative disease that slowly steals control of the body and mind. It’s turned their Israeli mother into a near stranger and fractured the sisters’ own bond in ways they’ll never admit. While Tovah finds comfort in their Jewish religion, Adina rebels against its rules. When the results come in, one twin tests negative for Huntington’s. The other tests positive. These opposite outcomes push them farther apart as they wrestle with guilt, betrayal, and the unexpected thrill of first love. How can they repair their relationship, and is it even worth saving? From debut author Rachel Lynn Solomon comes a luminous, heartbreaking tale of life, death, and the fragile bond between sisters.

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.

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 The Neuropathology of Huntington s Disease Classical Findings Recent Developments and Correlation to Functional Neuroanatomy written by Udo Rüb and published by Springer. This book was released on 2015-09-29 with total page 154 pages. Available in PDF, EPUB and Kindle. Book excerpt: This monograph describes the progress in neuropathological HD research made during the last century, the neuropathological hallmarks of HD and their pathogenic relevance. Starting with the initial descriptions of the progressive degeneration of the striatum as one of the key events in HD, the worldwide practiced Vonsattel HD grading system of striatal neurodegeneration will be outlined. Correlating neuropathological data with results on the functional neuroanatomy of the human brain, subsequent chapters will highlight recent HD findings: the neuronal loss in the cerebral neo-and allocortex, the neurodegeneration of select thalamic nuclei, the affection of the cerebellar cortex and nuclei, the involvement of select brainstem nuclei, as well as the pathophysiological relevance of these pathologies for the clinical picture of HD. Finally, the potential pathophysiological role of neuronal huntingtin aggregations and the most important and enduring challenges of neuropathological HD research are discussed.

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 Someone Else s Life written by Katie Dale and published by Simon and Schuster. This book was released on 2012-02-02 with total page 479 pages. Available in PDF, EPUB and Kindle. Book excerpt: How can you face your future when your past it a lie? When Rosie Kenning's mother, Trudie, dies from Huntingdon's disease, her whole world falls apart. Not only does Rosie desperately miss her mum, but now she has to face the fact that she could have inherited the fatal illness herself. Until she discovers that Trudie wasn't her biological mother at all ... Rosie is stunned. Can this be true? Is she grieving for a mother who wasn't even hers to lose? And if Trudie wasn't her mother, whois? But as Rosie delves into her past to discover who she really is, she is faced with a heart-breaking dilemma - to continue living a lie, or to reveal a truth that will shatter the lives of everyone around her...

Download or read book Rules for 50 50 Chances written by Kate McGovern and published by Farrar, Straus and Giroux (BYR). This book was released on 2015-11-24 with total page 351 pages. Available in PDF, EPUB and Kindle. Book excerpt: Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult-including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

Download or read book The Bloomsbury Handbook to Ageing in Contemporary Literature and Film written by Sarah Falcus and published by Bloomsbury Publishing. This book was released on 2023-06-29 with total page 475 pages. Available in PDF, EPUB and Kindle. Book excerpt: Across more than 30 chapters spanning migration, queerness, and climate change, this handbook captures how the interdisciplinary and intersectional endeavor of Age(ing) studies has shaped contemporary literary and film studies. In the early 21st century, the literary study of age and ageing in its cultural context has 'come of age': it has come to supplement and challenge a public discourse on ageing seen mainly as a political and demographic 'problem' in many countries of the world. Following a tripartite structure, it looks first at literary and film genres and how they have been shaped by knowledge about age and ageing, incorporating both narrative genres as well as poetry, drama and imagery. The second section includes chapters on key themes and concepts in Age(ing) Studies with examples from film and literature. The third section brings together case studies focussing on individual artists, national traditions and global ageing. Containing original contributions by pioneers in the field as well as new scholars from across the globe, it brings together current scholarship on ageing in literary and film studies, and offers new directions and perspectives.

Download or read book Huntington s Disease written by Oliver Quarrell and published by . This book was released on 1999 with total page 164 pages. Available in PDF, EPUB and Kindle. Book excerpt: Huntington's Disease is a genetically inherited condition, the result of severe nerve-cell damage in the brain. Due to the recent identification of the gene involved, and the debilitating nature of the disease, a great many more people are now affected either directly or indirectly (familiesand carers) by this condition. The majority of people develop the disease between the ages of 35 and 55, so for those that are aware of a genetic inheritance, there are enormous problems to confront - should you carry on life as normal? Should you start a family? In this, the first book onHuntington's disease written for sufferers and their families, advice is given on living with this disabling illness. Written as much for carers as for the patients themselves, the book aims to answer some of the questions that both sufferer and carer might have. With the identification of theresponsible gene, genetic counselling is now available for those at risk of developing the disease. Though some may wish not to use these services, the book clearly explains the role of the counsellor, and what help is additionally available from the various patient organisations worldwide.

Download or read book The Differential Diagnosis of Chorea written by Ruth H. Walker and published by Oxford University Press, USA. This book was released on 2011 with total page 475 pages. Available in PDF, EPUB and Kindle. Book excerpt: "The Differential Diagnosis of Chorea provides a comprehensive account of the various neurological conditions, both genetic and acquired, that lead to this involuntary movement disorder.

Download or read book Mapping Fate written by Alice Wexler and published by Univ of California Press. This book was released on 1996-12-30 with total page 354 pages. Available in PDF, EPUB and Kindle. Book excerpt: Wexler tells the story of a family at risk for Huntington's disease, a hereditary, incurable, fatal disorder from which her own mother died. This graceful and eloquent account goes beyond the specifics of the disease to explore the dynamics of family secrets, of living at risk, and the drama and limits of biomedical research. Photos.

Download or read book Psychiatric Neuroimaging written by Virginia Ng and published by IOS Press. This book was released on 2003 with total page 268 pages. Available in PDF, EPUB and Kindle. Book excerpt: