We are not alone in the fight!
Here are some links to other Narcolepsy Warriors out there:
http://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/understanding – informative website, with information on narcolepsy.
An engrossing examination of the science behind the little-known world of sleep.
Like many of us, journalist David K. Randall never gave sleep much thought. That is, until he began sleepwalking. One midnight crash into a hallway wall sent him on an investigation into the strange science of sleep.
In Dreamland, Randall explores the research that is investigating those dark hours that make up nearly a third of our lives. Taking readers from military battlefields to children’s bedrooms, Dreamland shows that sleep isn't as simple as it seems. Why did the results of one sleep study change the bookmakers’ odds for certain Monday Night Football games? Do women sleep differently than men? And if you happen to kill someone while you are sleepwalking, does that count as murder?
This book is a tour of the often odd, sometimes disturbing, and always fascinating things that go on in the peculiar world of sleep. You’ll never look at your pillow the same way again.
When Henry Nicholls was twenty-one, he was diagnosed with narcolepsy: a medical disorder causing him to fall asleep with no warning. For the healthy but overworked majority, this might sound like an enviable condition, but for Henry, the inability to stay awake is profoundly disabling, especially as it is accompanied by mysterious collapses called cataplexy, poor night-time sleep, hallucinations and sleep paralysis.
A writer and biologist, Nicholls explores the science of disordered sleep, discovering that around half of us will experience some kind of sleep dysfunction in our lives. From a CBT course to tackle insomnia to a colony of narcoleptic Dobermans, his journey takes him through the half-lit world of sleep to genuine revelations about his own life and health.
Told with humour and intelligence, Sleepyhead uses personal reflections, interviews with those with sleep disorders and the people who study them, anecdotes from medical history and insights from art and literature to change the way we understand our sleeping hours.
A native of England, Claire Crisp had it all—a strong marriage, three healthy children, and her own home in Bristol. Then came the H1N1 flu pandemic of 2009. It took only vaccine—one seemingly innocuous vaccine to Mathilda, the baby of the family—to change their lives forever. Diagnosed at age three as the world's youngest child with narcolepsy, the joyful and energetic Mathilda rapidly dissolved into someone unrecognizable.
In this compelling narrative, Claire Crisp chronicles the fight for Mathilda's treatment. Leaving their family and country in England, the Crisps begin a new journey—one of faith, of loss, and of love as immigrants to the western shores of the United States.
THE #1 SUNDAY TIMES BESTSELLER
TLS, OBSERVER, SUNDAY TIMES, FT, GUARDIAN, DAILY MAIL AND EVENING STANDARD BOOKS OF THE YEAR 2017
Sleep is one of the most important aspects of our life, health and longevity and yet it is increasingly neglected in twenty-first-century society, with devastating consequences: every major disease in the developed world - Alzheimer's, cancer, obesity, diabetes - has very strong causal links to deficient sleep.
In this book, the first of its kind written by a scientific expert, Professor Matthew Walker explores twenty years of cutting-edge research to solve the mystery of why sleep matters. Looking at creatures from across the animal kingdom as well as major human studies, Why We Sleep delves into everything from what really happens during REM sleep to how caffeine and alcohol affect sleep and why our sleep patterns change across a lifetime, transforming our appreciation of the extraordinary phenomenon that safeguards our existence.
Julie Flygare was on an ambitious path to success, entering law school at age 22, when narcolepsy destroyed the neurological boundaries between dreaming and reality in her brain. She faced terrifying hallucinations, paralysis and excruciating sleepiness, aspects of dream sleep taking place while wide awake.
Yet, narcolepsy was a wake-up call for Julie. Her illness propelled her onto a journey she never imagined, from lying paralyzed on her apartment floor to dancing euphorically at a nightclub; from the classrooms of Harvard Medical School to the start line of the Boston Marathon.
Winner of the San Francisco Book Festival Award for Biography/Autobiography, Wide Awake and Dreaming is a revealing first-hand account of dreams gone wrong with narcolepsy. It's the brave story of one woman trampling over barriers and finding light in the darkest of circumstances.
Henry Nichols - The Guardian - Oct 2017
Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.
The narcolepsy 360 podcasts are a series of interviews that take a panoramic view of narcolepsy from the patient, care-giver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From latest research to life-style tips, our podcasts shed light on the less discussed issues around narcolepsy.
Join Claire Crisp, our Executive Director, as she chats every week with people within our community.
Check out these fun narcolepsy podcasts on Learning how to manage narcolepsy and Supporting people with narcolepsy – what friends and family should know: Julie Flygare