Epilepsy Awareness Month

*This blog entry has been updated to remove outdated materials and to include any recently acquired materials.

Each year 150,000 people are diagnosed with Epilepsy, a brain disorder that causes seizures. There are different types of seizures and they can last anywhere from a few seconds to a few minutes. Although there is no cure for epilepsy, there are multiple treatments.

https://www.efepa.org/living-with-epilepsy/epilepsy-101/

https://www.cdc.gov/mmwr/volumes/67/wr/mm6715a1.htm?s_cid=mm6715a1_w

First Aid for Seizures involves making sure that the person is free from obstructions, safe, unrestrained, and the length of the seizure is timed.

https://health.clevelandclinic.org/help-someone-whos-seizure-infographic/?utm_campaign=cc+pins&utm_medium=social&utm_source=pinterest&utm_content=seizure+infographic&dynid=pinterest-_-cc+pins-_-social-_-social-_-seizure+infographic

The impact of having epilepsy on one's education, employment, and independence can vary. https://www.ucb.com/_up/ucb_com_news/documents/Epilepsy_and_Quality_of_Life.pdf

"People with epilepsy can experience reduced access to educational opportunities, a withholding of the opportunity to obtain a driving license, barriers to enter particular occupations, and reduced access to health and life insurance. In many countries, legislation reflects centuries of misunderstanding about epilepsy. For example:

In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.

In the United Kingdom of Great Britain and Northern Ireland, laws that permitted the annulment of a marriage on the grounds of epilepsy were not amended until 1971.

In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centers, and other public buildings.

Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to health-care services, and raise the quality of life for people with epilepsy." -https://www.who.int/news-room/fact-sheets/detail/epilepsy

Links:

https://www.exploringepilepsytoday.com/module3#

https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month

https://www.efepa.org/living-with-epilepsy/#LWE6

In My Right Mind: My Life with Epilepsy by Crane, Amy

In my right mind is a story of a woman's experience living with epilepsy in her childhood and young adult years. Amy had complex partial and grand mal seizures, those seizures that are difficult to control by medication. Amy went on to college to pursue a teaching degree, although she continued to have seizures on a regular basis. She faced physical, emotional, and spiritual trials while trying to keep up with the academic requirements of her degree program. Then in her junior year of college, God opened doors for her to put her epilepsy behind her and gain a better quality of life. Amy had the opportunity to find out if she was a candidate for brain surgery. After undergoing medical tests, she was informed that she had the most operable type of epilepsy. The decision to have brain surgery was up to her.

She Danced with Lightning: My Daughter's Struggle with Epilepsy and Her Boundless Will to Live by Palmieri, Marc

"Part family memoir, part medical mystery involving severe epilepsy, She Danced with Lightning follows one girl's battle to persevere as a competitive dancer, culminating in a terrifying decline, a courageous performance, and an eleventh-hour, life-saving brain surgery. Eleven-year-old Anna has lived all her life with severe epilepsy. Despite the ravage of thousands of violent seizures and heavy medications, she has thrived at school, athletics, and her greatest passion -- dance. As she approaches her twelfth birthday, Anna’s condition takes a dire turn. Her health declines quickly and a new diagnosis is revealed, leaving the family only one excruciating choice. A parent’s memoir about the medical mysteries of epilepsy and the personal suffering of raising a child with a deadly health condition, She Danced with Lightning is told from the perspective of Anna’s dream-chasing father, who comes to learn from her strength and courage he never imagined possible"--Back cover.

Epilepsy Explained: A Book for People Who Want to Know More

In the last five years, approximately 2.7 million people have been treated for epilepsy and it is estimated that as much as one in one hundred of the world's population will develop epilepsy during their lifetime. It is further estimated that 60 million people worldwide have epilepsy and in the United States alone, between seventy to eighty thousand people are newly diagnosed each year. Despite being such a common problem, most people know little about the disorder and people with epilepsy feel stigmatized. Filled with illustrations on almost every page it offers information on epilepsy, intended for patients, family members, friends, and caregivers. This book is divided into easy-to-digest sections that address such fundamental questions as what epilepsy is, what happens in different types of epileptic seizures, how epilepsy is diagnosed, and how seizures are treated. The authors include information on numerous topics, including living successfully with seizures, patients rights, and current drugs used to treat epilepsy, with many real life examples that shed light on how the topic under discussion affects people with epilepsy. The book includes information for particular groups of readers such as women, children, and teens. It has an easy-to-follow organization, is clearly structured and has a detailed index and glossary, allowing readers to easily find specific information pertaining to their condition. Written by physicians who work daily with epilepsy, this book provides people with the knowledge they need to make informed choices about their illness.

The Ketogenic Cookbook: Nutritious Low-Carb, Figh-Fat Paleo Meals to Heal your Body by Moore, Jimmy

In this first-of-its-kind collection, Jimmy Moore, leading low-carb diet blogger and podcaster and bestselling author of Keto Clarity, joins forces with fellow keto advocate and nutritionist Maria Emmerich to bring you more than 150 delicious, real food-based, keto-friendly recipes that are ideal for anyone who wants to be in nutritional ketosis or simply wants to eat healthier. In addition, The Ketogenic Cookbook explains why a ketogenic diet can help treat chronic illnesses from type 2 diabetes to heart disease to epilepsy, offers practical advice for pursuing nutritional ketosis, outlines the unique combination of whole foods that will help you become ketogenic, and much more.

If you're seeking a healthier way to eat that will help heal your body of damage done by years of eating tons of sugar and carbs, the ketogenic diet may be for you. There's no need to sacrifice taste for good health!

Epilepsy in Children: What Every Parent Needs to Know by Devinsky, Orrin

For the parent of a child with epilepsy, an easy-to-read guide to understanding and managing the disorder while helping your child achieve and maintain a high quality of life. From a leading neurologist, experienced nurse practitioner, and registered dietician comes the complete guide to managing your child's life with epilepsy. Epilepsy in Children offers the practical advice and information you need to manage your child's seizures safely and effectively, understand the latest treatment options, and find hope for a seizure-free future. Get the right diagnosis for your child and the correct treatment to reduce the frequency of seizures faster. Learn the benefits and risks of pharmaceutical, surgical, and alternative therapies including the ketogenic diet. Help your child maintain a normal life at school, with friends, and in sports and other activities. Navigate the transitions from infancy and childhood to puberty, to becoming a young adult.

Epilepsy: 199 answers: a doctor responds to his patients' questions by Wilner, Andrew N.

Written by noted specialist Andrew Wilner, Epilepsy: 199 Answers provides accurate, current, and comprehensible medical information for epilepsy patients, family members, and anyone involved in patient care. Easy to read, informative, and time-tested, this question-and-answer book helps readers ask better questions to develop a deeper understanding of the nature of this disease. This completely updated edition includes information on everything from brain surgery to diet. New sections cover alternative therapies, recent findings on birth defects possibly caused by new antiepileptic drugs, the ketogenic and Atkins diets for patients, new FDA indication for the vagus nerve stimulator, and updated recommendations for women and epilepsy. The book also includes a comprehensive resource section, and there's a health record tracker so patients can accurately monitor their progress and receive optimal care.

Disability Visibility: Twenty-first Century Disabled Voices

"A groundbreaking collection of first-person writing on the joys and challenges of the modern disability experience: Disability Visibility brings together the voices of activists, authors, lawyers, politicians, artists, and everyday people whose daily lives are, in the words of playwright Neil Marcus, "an art . . . an ingenious way to live." According to the last census, one in five people in the United States lives with a disability. Some are visible, some are hidden--but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together an urgent, galvanizing collection of personal essays by contemporary disabled writers. There is Harriet McBryde Johnson's "Unspeakable Conversations," which describes her famous debate with Princeton philosopher Peter Singer over her own personhood. There is columnist s. e. smith's celebratory review of a work of theater by disabled performers. There are original pieces by up-and-coming authors like Keah Brown and Haben Girma. There are blog posts, manifestos, eulogies, and testimonies to Congress. Taken together, this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love"-- Provided by publisher.

The Spirit Catches You and You Fall Down: a Hmong child, her American doctors, and the Collision of Two Cultures by Fadiman, Anne

Winner of the National Book Critics Circle Award for Nonfiction When three-month-old Lia Lee Arrived at the county hospital emergency room in Merced, California, a chain of events was set in motion from which neither she nor her parents nor her doctors would ever recover. Lia's parents, Foua and Nao Kao were part of a large Hmong community in Merced, refugees from the CIA-run "Quiet War" in Laos. The Hmong, traditionally a close-knit and fiercely people, have been less amenable to assimilation than most immigrants, adhering steadfastly to the rituals and beliefs of their ancestors. Lia's pediatricians, Neil Ernst and his wife, Peggy Philip, cleaved just as strongly to another tradition: that of Western medicine. When Lia Lee Entered the American medical system, diagnosed as an epileptic, her story became a tragic case history of cultural miscommunication.

Musicophilia: Tales of Music and the Brain by Sacks, Oliver W.

Music can move us to the heights or depths of emotion. It can persuade us to buy something or remind us of our first date. It can lift us out of depression when nothing else can. It can get us dancing to its beat. But the power of music goes much, much further. Indeed, music occupies more areas of our brain than language does--humans are a musical species. Oliver Sacks's compassionate, compelling tales of people struggling to adapt to different neurological conditions have fundamentally changed the way we think of our own brains, and of the human experience. Here, he examines the powers of music through the individual experiences of patients, musicians, and everyday people. Music is irresistible, haunting, and unforgettable, and Oliver Sacks tells us why.--From the publisher's description.

The Kingdoms by Pulley, Natasha

Joe Tournier has a bad case of amnesia. His first memory is of stepping off a train in the nineteenth-century French colony of England. The only clue Joe has about his identity is a century-old postcard of a Scottish lighthouse that arrives in London the same month he does. Written in illegal English--instead of French--the postcard is signed only with the letter "M," but Joe is certain whoever wrote it knows him far better than he currently knows himself, and he's determined to find the writer. The search for M, though, will drive Joe from French-ruled London to rebel-owned Scotland and finally onto the battle ships of a lost empire's Royal Navy. Swept out to sea with a hardened British sea captain named Kite, who might know more about Joe's past than he's willing to let on, Joe will remake history, and himself.

The Islands at the End of the World by Aslan, Austin

Stranded in Honolulu when a strange cloud causes a worldwide electronics failure, sixteen-year-old Leilani and her father must make their way home to Hilo amid escalating perils, including her severe epilepsy.

Nowhere Near You by Thomas, Leah

" Ollie and Moritz might never meet, but their friendship knows no bounds. Their letters carry on as Ollie embarks on his first road trip away from the woods--no easy feat for a boy allergic to electricity--and Moritz decides which new school would best suit an eyeless boy who prefers to be alone. Along the way they meet other teens like them, other products of strange science who lead seemingly normal lives in ways Ollie and Moritz never imagined possible""-- Provided by publisher.

100 Sideways Miles by Smith, Andrew

Finn Easton, sixteen and epileptic, struggles to feel like more than just a character in his father's cult-classic novels with the help of his best friend, Cade Hernandez, and first love, Julia until Julia moves away.

Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits by Morton, David A.

"This comprehensive book covers both SSDI and SSI, shows the reader how to prove a disability, and explains how one's age, education, and work experience affect his or her chances. Parents will find special information about benefits available to children with a disability. The reader will learn how to: find the disability criteria for a medical condition, prove the severity of a disability, appeal if benefits are denied, work part-time while keeping benefits, prepare for a Continuing Disability Review, and more. This book also contains filled-in samples of all the forms needed, including the SSDI and SSI disability applications"--. Provided by publisher.

Social Security, Medicare & Government Pensions: Get the Most Out of Your Retirement & Medical Benefits by Matthews, J. L.

Your complete guide to Social Security retirement and medical benefits. The rules for claiming Social Security benefits have changed. Find out if you can still choose between your own benefits and spousal benefits. Learn this and more with Social Security, Medicare & Government Pensions completely updated for 2020.

For more information be sure to check out The Epilepsy Foundation at  https://www.epilepsy.com/