Faces of Huntington's
Author: Carmen Leal-Pock
Publisher: Belleville, Ont. : Essence Pub.
Published: 1998
Total Pages: 363
ISBN-13: 9781894169103
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Author: Carmen Leal-Pock
Publisher: Belleville, Ont. : Essence Pub.
Published: 1998
Total Pages: 363
ISBN-13: 9781894169103
DOWNLOAD EBOOKAuthor: Steven Beatty
Publisher: Library and Archives Canada
Published: 2018-04-14
Total Pages: 116
ISBN-13: 9781775317807
DOWNLOAD EBOOKAll 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
Author: Trish Dainton
Publisher:
Published: 2011-05
Total Pages: 180
ISBN-13: 9781908105097
DOWNLOAD EBOOKUsing poetry and prose, this book aims at describing Huntington's disease through the eyes of a carer based on her own experiences, and those of many hundreds of carers and sufferers. With over seventy poems, and their supplementary stories grouped within eight themes from science, to society, it touches on the practical sides of caring and darker side of human nature. Being the complex beast that it is, the book not only covers an insight into Huntington's but into the plight of people suffering from all kinds of mental and physical disability, and of those caring for them.
Author: Cicero M Fain III
Publisher: University of Illinois Press
Published: 2019-05-16
Total Pages: 247
ISBN-13: 0252051432
DOWNLOAD EBOOKHow African Americans thrived in a West Virginia city By 1930, Huntington had become West Virginia's largest city. Its booming economy and relatively tolerant racial climate attracted African Americans from across Appalachia and the South. Prosperity gave these migrants political clout and spurred the formation of communities that defined black Huntington--factors that empowered blacks to confront institutionalized and industrial racism on the one hand and the white embrace of Jim Crow on the other. Cicero M. Fain III illuminates the unique cultural identity and dynamic sense of accomplishment and purpose that transformed African American life in Huntington. Using interviews and untapped archival materials, Fain details the rise and consolidation of the black working class as it pursued, then fulfilled, its aspirations. He also reveals how African Americans developed a host of strategies--strong kin and social networks, institutional development, property ownership, and legal challenges--to defend their gains in the face of the white status quo. Eye-opening and eloquent, Black Huntington makes visible another facet of the African American experience in Appalachia.
Author: Sandy Sulaiman
Publisher: Jessica Kingsley Publishers
Published: 2007-04-15
Total Pages: 178
ISBN-13: 1846426308
DOWNLOAD EBOOKHuntington'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.
Author: Oliver Quarrell
Publisher: Oxford University Press, USA
Published: 2009-01-08
Total Pages: 222
ISBN-13: 0199236127
DOWNLOAD EBOOKHuntington's disease (HD) is an inherited progressive neurodegenerative disorder. Although onset of HD usually occurs in adulthood, a small percentage of cases develop symptoms before 20 years of age (juvenile-onset Huntington's Disease or JHD). This book summarises, for the first time, the clinical and scientific knowledge available on JHD.
Author: Adam Rosenblatt
Publisher:
Published: 1999-01-01
Total Pages: 85
ISBN-13: 9780963773029
DOWNLOAD EBOOKAuthor: Samuel P. Huntington
Publisher:
Published: 2005
Total Pages: 0
ISBN-13: 9780684866697
DOWNLOAD EBOOKAmerica was founded by settlers who brought with them a distinct culture including the English language, Protestant values, individualism, religious commitment, and respect for law. The waves of later immigrants came gradually accepted these values and assimilated into America's Anglo-Protestant culture. More recently, however, national identity has been eroded by the problems of assimilating massive numbers of immigrants, bilingualism, multiculturalism, the devaluation of citizenship, and the "denationalization" of American élites. September 11 brought a revival of American patriotism, but already there are signs that this is fading. This book shows the need for us to reassert the core values that make us Americans.--From publisher description.
Author: Therese Crutcher-Marin
Publisher: Norcal Publishing Company
Published: 2017-03-22
Total Pages: 312
ISBN-13: 9780998442204
DOWNLOAD EBOOKTherese 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.
Author: Lisa Genova
Publisher: Simon and Schuster
Published: 2015-04-07
Total Pages: 368
ISBN-13: 1476717834
DOWNLOAD EBOOKA 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.