All posts by cbartlett

“The Art of Aging: A Doctor’s Prescription for Well-Being” by Sherwin B Nuland

Published: 2007

Pages: 302

Summary:The Art of Aging” is a book that describes how to handle aging and death with grace, happiness, and productivity. Nuland first defines what it physically means to age, and then connects that definition to potential choices one could make to ease up some of the physical burdens in late life. The author proceeds to share the details from the lives of various elderly people who chose to make aging into an art, often circling this choice around continuing work, looking to realms of faith, and maintaining general positivity. Nuland ends the book with advice about staying healthy for longer and current research that focuses solely on extending the lives of the elderly

“The Art of Aging” is useful as a positive resource for those dealing with aging or terminal illness, such as people with HD or their caretakers. The book references real-life people who faced severe illness, death of loved ones, and general financial challenges in the light of growing older. Nuland especially focuses on ways to stay productive and joyful during one’s later years, as well as how to adjust to unavoidable changes in the body and mind. “The Art of Aging” serves as a good, gentle beginning for those, such as HD patients, who have to start thinking about end-of-life issues.

CMB 05/21/2013

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"The Official Patient’s Sourcebook on Huntington’s Disease: A Revised and Updated Directory for the Internet Age" edited by James N. Parker and Philip M. Parker

Published: 2002

Pages: 206

Summary: “The Official Patient’s Sourcebook on Huntington’s Disease” is a three-pronged guide to learning more about Huntington’s disease. It includes basic information about HD (what it is, how it is inherited, etc.), resources that contain more advanced HD information, and useful appendices with advice on how and where to research specific topics about HD (medications, nutrition, etc.). Each chapter has a helpful glossary of HD-related terms used in the chapter. This book is full of websites, book references, and tips for finding out the most about any subject related to Huntington’s disease, so it is a useful guide for any doctor, HD patient, or HD caregiver.

CMB 05/21/2013

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“Omega-3 Oils: A Practical Guide” by Donald Rudin and Clara Felix

Published: 1996

Length: 216 pages

Summary: “Omega-3 Oils” identifies the lack of particular nutrients in the American diet as a cause of many modern chronic diseases. The nutrients Rudin identifies include omega-3 fatty acids, fiber, and specific vitamins, minerals, and antioxidants. According to the author, a shortage of these nutritional basics in processed foods leads to skin problems, fatigue, heart and kidney disease, infertility, obesity, aging and poor mental health. Rudin explores how the deficiency of each nutrient could lead to various ailments in a study of 44 patients. He then recommends The Omega Program, which he designed to combat these modern illnesses using flaxseed oil, supplements, and exercise.

This book is a useful resource for HD patients and families already using omega-3 oils to combat some of the side effects of Huntington’s disease. “Omega-3 Oils” does not directly address Huntington’s disease or similar genetic neurodegenerative diseases, but it does give readers supplementary information about how omega-3 oils might work in the body.

CMB 05/21/2013

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“A Caregiver’s Handbook for Advanced-Stage Huntington’s Disease” by Jim Pollard

Published: 1999

Length: 69 pages

Summary: This handbook gives key information for families and nursing home staff that are taking care of patients with late-stage Huntington’s disease. It begins with a description of what HD looks like, particularly in late stages, and then focuses on important issues especially important for these patients. This includes communicating wants and needs, nutrition, difficulties swallowing, falling, cognitive changes, and other medical issues that are specific to advanced HD. The book takes on a caring, understanding tone and organizes the large quantity of information into lists, tables, and steps to follow. Short stories are included every few sections to demonstrate what actions to take in various situations. The end of the handbook contains contact information for organizations that lend support and sell assistive devices specific to Huntington’s disease.

CMB 05/21/2013

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“The Agile Gene: How Nature Turns on Nurture” by Matt Ridley

Published: 2003

Length: 326 pages

Summary: “The Agile Gene” uses the research of twelve major scientists to explore the nature – versus nurture – debate.  This debate centers around whether our genes or our environment has a stronger effect in defining who people are physically and behaviorally, something that is extremely relevant in Huntington’s disease research. Ridley takes a moderate approach to this discussion. He begins by establishing that genes are not gods and that parenting only matters to the extent that it is not terrible. Individuality, the book claims, is established by a mix of aptitude and appetite reinforced by peers. Social policy is meant to account for the differences of individuality that do exist, he concludes, and free will exists even though we are strongly influenced by both our DNA and our surroundings. Ridley promotes repeatedly that nature works via nurture.

This book provides a modern outlook on how science and genetics play a role in developing our world. It could act as a useful supplementary resource for those who are curious about where scientific research is heading in medicine, gene therapy, and academia. “The Agile Gene” could be of interest to any HD patient or caregiver who wanted to know how the nature – versus – nurture debate impacts Huntington’s disease and other genetic diseases like it, especially given its modern and relevant perspective.

CMB 05/21/2013

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"Learning to Live with Huntington’s Disease: One Family’s Story" by Sandy Sulaiman

Published: 2007

Length: 176 Pages

Summary:Learning to Live with Huntington’s Disease” is a compilation by journalist Sandy Sulaiman’s family about what it’s like to live with HD in the family. It starts off with a chapter by Sulaiman describing what it was like to discover that she had HD and how the diagnosis changed the rest of her life. Her unaffected sister, Wendy, writes the next chapter and discusses her experience with “survivor’s guilt” for not having inherited the gene for Huntington’s disease. Sulaiman’s older son, Brom, and younger son, Danny, write the next two respective chapters of the family book. Both highlight how they cope with their mother’s symptoms, their family’s worries, and their own 50% risks of inheriting the HD gene. Chantel, Sulaiman’s daughter-in-law and Brom’s wife, talks about her decision to marry into a family with HD knowing that her husband has a 50% risk of inheriting the gene and their potential children carry a 50% risk if the father does have the gene.  Sulaiman’s husband, Phil, pens one of the longer chapters of the book. He describes how HD impacted his marriage and his role as a caregiver, and gives advice from the perspective of a  person who sees just how messy and devastating HD can be. Sulaiman ends the book with a chapter about her father, Brian, who gave her the HD gene.

This book gives a unique combination of perspectives of people who are directly and indirectly affected by having one person in the family with HD. The lengths and tones of each chapter vary, but overall every character gives advice, addresses common and uncommon questions, and personalizes HD. It is especially appropriate for HD patients and caregivers looking for shared experiences, as well as medical professionals and outsiders who want to learn more about this rare disease.

CMB 05/21/2013

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"A Physician's Guide to the Management of Huntington's Disease"

Published: 1999

Length: 81 pages

Summary: This book is a comprehensive guide, issued by the HDSA, to ways in which physicians can help caregivers and families manage patients with Huntington’s disease. It begins with an overview of the disease and the genetics involved with HD, and then proceeds to discuss HD as a movement disorder, a cognitive disorder, and a psychiatric disorder. The guide also reviews miscellaneous activities like smoking, driving, and end-of-life issues.

“A Physician’s Guide to the Management of Huntington’s Disease” is primarily intended for doctors and caregivers, as it gives precise recommendations about medication dosages and treatment options. However, the way in which each section is broken down into tables, lists, and steps makes it a useful resource for HD patients and families who want summaries of what the standard physician would recommend in a variety of complicated situations at home.

CMB 03/04/2013

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"Gene Hunter: The Story of Neuropsychologist Nancy Wexler" by Adele Glimm

Published: 2005

Length: 118 pages

Summary: Written specifically for youths, “Gene Hunter” takes a close look at the childhood experiences of Nancy Wexler and how it impacted her contribution towards the discovery of the Huntington’s disease gene. The book begins with HD basics, including genetics, symptoms, and research, and ties those basics in with Nancy Wexler’s personal experiences with HD in her family and in her work. It then goes on to give a simple, but full, narrative of Wexler’s life, including many anecdotes to characterize Wexler and her family. Finally, Glimm focuses on how Wexler’s genetic research and ability to motivate talented scientists led to the discovery of the gene for Huntington’s disease. The book ends with a discussion of potential therapies for HD and how Wexler is still contributing to the HD community today.

Gene Hunter” is a good resource for introducing juveniles to Huntington’s disease and leaders in the scientific community working on HD. It asks ethical questions about genetic testing, research priorities, and appropriate care for HD patients and gives insights about the importance of finding a cure. Glimm uses Wexler as an example of what it means to be an inspirational woman in science who carries the risk of having HD like so many others.

CMB 03/04/2013

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"Huntington's Disease" edited by Gillian Bates, Peter Harper, and Lesley Jones

Published: 2002

Length: 558 pages

Summary: “Huntington’s Disease” is a compilation of descriptions of many kinds of research being done in relation to Huntington’s disease. The book categorizes the sections into clinical aspects, genetics, neurobiology, molecular biology, and therapeutic aspects of HD, as well as having a special section on other polyglutamine diseases. Typical explanations of research findings include good introductory references, an abundance of charts, tables, and diagrams, and conclusions explaining why the hundreds of research ideas mentioned are relevant to the progress of finding potential treatments and cures for Huntington’s disease.

This book is useful as a tool for more advanced personal research by patients, families, caregivers, or even physicians for information on what the scientific community is looking into in terms of Huntington’s disease. It goes into immense detail about how this polyglutamine disease is different from others and why it is so tragically harmful in the brain and body. The organization of “Huntington’s Disease” is ideal for looking up specific questions about HD rather than acting as a guide to read in full in one or a few sittings. It is truly excellent for the curious scientific reader interested in HD.

CMB 03/04/2013

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"Understanding Behavior in Huntington's Disease" by Jane S. Paulsen

Published: 1999

Length: 46 pages

Summary: This book breaks down some of the more difficult behavioral issues associated with having Huntington’s disease and suggests several approaches to solving them. After describing how HD affects brain circuitry as the disease progresses, Paulsen connects problems such as apathy, impulse control, and irritability to the neurodegeneration she previously explains and to emotions and circumstances that could further influence behavior. Paulsen breaks down these approaches into steps or stages and frequently uses lists, definitions, and metaphors to clarify potentially complicated or upsetting situations that occur. The author also uses fictitious characters in hypothetical situations and examples throughout the book, demonstrating the implementation of methods she lists for understanding difficult behaviors. Overall,”Understanding Behaviors in Huntington’s Disease” is a useful resources for families and caregivers of HD patients, as well as doctors that desire to recommend appropriate advice about typical HD behaviors.

CMB 02/26/2013

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"Huntington's Disease: The Facts" by Oliver Quarrell

Published: 1999

Length: 139 pages

Summary: This book provides a simple and thorough introduction to all aspects of Huntington’s disease. Topics that are discussed include the history of Huntington’s disease discoveries, patient organizations, and scientific research.  The author also covers behavioral, neurological, and physical characteristics, the genetics of HD, and genetic counseling. Quarrell uses straightforward language, simple metaphors, and diagrams to explain all the basics of HD, making “Huntington’s Disease” a useful tool for patients or family members who need an easy, accurate overview of HD.

CMB 02/26/2013

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"The Test" by Jean Barema

Published: 2005

Length: 160 pages

Summary:In “The Test: Living in the Shadow of Huntington’s Disease” by Jean Barema, a successful journalist in France, tells the story of his chaotic emotional life before finally getting tested for the Huntington’s disease gene. At age 52, Barema faces the decline of his affected older brother and younger sister while considering whether or not to find out the truth about himself. He questions everything in his life that could be a potential symptom: depression, irritability, and similarities to the mother who could have passed along the abnormal gene to him. Barema almost drives away his wife, children, and family as he approaches his personal doomsday – April 4th, the day his test results arrive.

“The Test” focuses on what it means to be at risk for Huntington’s disease and how this differs from having the disease or caring for a loved one with the disease. Barema explores the rationality and irrationality of suicide if he were to receive a positive test result and pushes the boundaries of what actions are acceptable when death is potentially imminent. He questions what it means to have one’s brain destroyed from the inside-out and whether there really is a line between being disease-free and diseased with HD. This book’s importance lies in its examination of how not knowing one’s HD status can be life-changing all on its own, something that families and doctors seek to understand and HD patients usually remember all too well.

CMB 02/26/2013

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"Mapping Fate" by Alice Wexler

Published: 1995
Length: 321 pages
Summary: In “Mapping Fate: A Memoir of Family, Risk, and Genetic Research”, Alice Wexler reflects on her personal and academic experiences with Huntington’s disease. Wexler and her sister, Nancy, watch as their mother slowly deteriorates after her HD diagnosis in her 50s, while they are confronted with their new at-risk statuses. Then Nancy, motivated by HD’s constant presence in her life, joins forces with her impassioned father to organize scientists to find the gene and potential therapies for HD. Wexler details the decades-long process to find the gene, all while intertwining this research with her and Nancy’s struggles with reproductive decisions and, ultimately, whether or not to get tested once the HD gene is found.
This book addresses a variety of questions that could apply to people at risk for HD, family members of patients with HD, scientists, and academic scholars interested in the implications of HD. It explores what it means to be a woman at risk for HD, especially in light of having potentially received the gene maternally. The politics behind fundraising and researching are closely analyzed, as many often assume these two activities are fairly straightforward when closely connected to a serious disease. Wexler gives a firsthand account of the decline of a loved one with HD, evaluating her and her family’s rage, grief, and love as her mother’s death approaches. Most critically, this book repeatedly brings up the choices of whether or not to have children if one is at risk and whether or not to get tested for the gene.
CMB 02/26/2013
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