Encephalitis Books

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As a survivor of encephalitis, I was delighted to sit down and read this book. I've never met another encephalitis survivor face to face... so, when reading Aunt Killer, I was fascinated to get to know Eva, the main character, who is struggling to comprehend what is happening to herself.
There were some places in the book.... some parts, which touched my heart, as I remembered having the exact same feelings about encephalitis. I felt myself nodding, and understanding, some of the feelings which the author expressed. Some moments, the main character was so 'normal.' And other moments, she just slipped away...
It's high time that someone included the topic of encephalitis within fiction. There are so many people in the world who think that they are alone. Who just curl up with sadness, and attempt to carry on as best they can. This book brings encephalitis out of the cupboard, dusts it off, and explores it in plain view.
Sincere thanks to the author of this book. She has taken a step which will lighten the load of many people, as she has magically woven the truth of encephalitis, around a fast paced story of suspense.

Aunt Killer uses vivid descriptions to enable the reader to visualize the characters and their emotional lives. Romance drifts through the book like a gentle breeze. Compassion and honest form a marriage that keeps the pages of the book turning. The chapters are short enough to be completed while waiting for an appointment. But,the anticipation and curiosity created in the story propelled me to read,"Just one More Chapter!" What would happen without short-term memory? That alone created suspense!

I have just finished reading "Aunt Killer" and I loved it! I am a survivor of encephalitis and I plan on giving a copy of this book to everyone I know. There is no way they won't begin to understand what I went through and continue to go through everyday of my life. Jeneva Johns and I did not have the same type of encephalitis but the end results are the same. I especially loved her telling about "forgetting the butter" but, I guess you'd have to be a survivor to understand that! Way to go, Jeneva!!!!

The book is an excellent source of information on the various types of encephalitides. It is a very comprehensive illustration and I feel it will be very useful for clinical practitioners as well for residents and fellows. The practical guidelines for management of the various types of encephalitis is also very informative. Could not find a better book on the subject!

Text was passed from hand to hand at the FACES 2003 Encephalitis Conference, and received very positive feedback from the survivors, caregivers and loved ones who viewed it. It seems every person there wishes to acquire a copy for medical professionals in their own neighbourhood. An excellent reference book.

....probably threw it away without finishing the first page. And that's sad, because it's a fine book, 95% of which can be understood by any intelligent person willing to work at it. I bought this in a bookstore shortly after seeing the movie...it was sold in a very nice display, meant to capitalize on the movie. This I consider to have been improper [NOT illegal; this is America] marketing; within the first paragraph, Dr. Sacks is talking about the difference between upper and lower motor neuron lesions [THAT brought back memories], infinite motion, infinite rigidity...99+% of the poor folks who wasted their money were blown away. The rest of us were hooked by a fabulous book.

Most will know the story...in the years after WWI, an epidemic of viral encephalitis swept the country. Over the next several years, some of the survivors developed a severe form of Parkinson's, gradually becoming completely immobile, and landing in nursing homes. This was not a vegatative state; as we found out much later, these poor souls were fully aware of their plight. In the summer of 1969, Dr. Oliver Sacks took a job in a New York City long-term care facility, and decided to give some of these post-encephalitis patients what was then a brand-new drug, L-Dopa. The miracle was profound; the patients "awakened" [not really the right term]....alas, the miracle was temporary...side effects appeared, the therapeutic range shrunk, and the patients went back to their old state, or worse. Actually, some of the "cures" were more or less "permanent", but these were a minority. "Awakenings" is a series of case studies, the story of agony, short-term ectasy, then more agony. Medicine is like that; all progress meets failure along the way. This book lets the reader know what that feels like to the doctor. L-Dopa, with its derivatives, is still around; it's still dangerous for anyone not an expert to use.

Oliver Sacks is a Neurologist, and writes like one [and like a philosopher]. That's OK. He combines skill with compassion and basic human decency; if any of my family needed a Neurologist, I'd want Oliver Sacks. Neurology, like Oncology, is a sad specialty, with a lot of unhappy endings. Despite having an interest, and aptitude, that's probably why I didn't end up in it. This is a truly profound book; unless you're a Neurologist [not just a physician], you will need the glossery. However, your effort will be well rewarded.

I absolutely love this book! Oliver Sacks' clinical observations paired with his understanding of human experience provide a multidimensional account of what the patients described in the book were going through.

You saw the movie and now you're hankering to learn more about the backgrounds and the treatments of the patients brought to the silver screen in "Awakenings". If you're hoping for a pop-sci version of the film, you'll be disappointed. The screenplay took poetic license with the original text, dressing it up with more drama and humor than you'll find in the book. On the other hand, if you're looking for an in-depth chronicle of the disease, which reads at times like a medical journal, then this book will certainly satisfy you.

Sacks is both a tireless writer and a devoted practioner of medicine. The book reflects who he is. It's thoroughlly annotated with footnotes, and includes a lengthy glossary to help you sort out all of the medical jargon which is used judiciously throughout the text. It was definitely an eye-opener reading the book after seeing the movie. But they're very different projects. See the movie if you're interested in an entertaining and fascinating story about a handful of awakenings in the late 1960s. Read the book if you want the deep dive into the disease and Dr. Sacks' lifelong devotion to its treatment.

I saw the movie called AWAKENINGS (with Robt. DeNiro and Robin Williams) and was intrigued, so I bought this book by Sachs. I was not disappointed. The book is so much more thorough than the movie , and I must say...much more technical.

Infact, the book is so technical that it could take the reader quite a while to decipher all the medical terms included & to read the entire book quickly. Take your time with this one.

As a non-medical student, it took me a while to read through this book, but it was worth it! Also, the other good thing is that the book gives a good "encyclodepia" of all the medical terms in the book's NOTES.

In spite of all the praise that this book has received from other readers, all the glowing reviews it has garnered, and its' scientific value, which I am not qualified to either laud or argue, I found it to be a great disappointment. I don't like saying this for Oliver Sacks has long been one of my favorite writers. In fact, when I purchased this book, it was the only one of his that I did not already own: I could hardly wait to open its' cover. But, high expectations notwithstanding, it fell flat. Whereas, in Sacks' other works, the individuals featured in his case histories seemed so real, so fully fleshed out, that they literally walked across the pages, in Awakenings, it was as if they never awakened at all. Sorry.

zzzzzzzz.... Guy gets sick, guy is well supported by family , friends, lite religion and plenty of cash. Get "Deep Survival" by Laurence Gonzales instead of this for some truly gripping tales of human Resilience. Steve Kelly

Appreciated Richmond's interweaving, and fleshing out of, the Biblical story of Lazarus with Buddhist beliefs and principles. The honest and revealing sharing of his emotional experience was moving. I wish he had commented, even briefly, on people who don't have devoted spouses, ethical business associates, and good medical insurance when such tragedies happen. Does he have anything to offer these folks? He is/was a blessed man in many ways.

What a book. Good for you Lew. It goes to the depths and brings us up with a moving story of despair and hope and enormous effort.

An exceptional book! Lewis Richmond touches your heart as he writes of a rare disease, encephalitis, that transforms his mind, body, and soul. As a survivor, I truly appreciate the depth he goes to explain this devastating ordeal. Highly recommended.

Lewis uses the words, "...permanently transformed by the experience..." "...must endure against formidable odds." In this book, Lewis has told his story in a manner which will warm the hearts of survivors, AND help loved ones and caregivers understand. I will very highly recommend this book to my survivor friends. A remarkable autobiography!

I read about a book or two a month. Usually fiction because non-fiction tends to bore me. Not so with this book. Very well written and very inspiring. I would recommend this book to anyone who has considered "giving up". When life seems to throw you a curve ball and you don't know what to do just take a look at how this family reacted. No matter what your personal belief system you will definitely be inspired and very possibly start down your own path to seeking a personal relationship with a very real God. Just read this book!

I found this true story of Alysa's illness to be intriguing and gripping. I was saddened by the terrible things that kept happening to her, but was amazed by her family's ability to face every problem with faith. She was so fortunate to have such determined advocates for her care. I was touched by the boyfriend and his dedication to continue the relationship when she could not even respond. Overall, the book's style kept me interested. Just when an emotional episode occurred, an interview vignette was introduced and I'd learn more intimate information about Alysa's family and friends. The faith that the family displayed certainly serves as an example to all. I would recommend this book, especially if you enjoy medical stories.

Kathy Evernham was inspired while living in Michigan to tell an actual story of a young girl who contracted a terrible meningitis type disease and her misdiagnosis. The disease changed her personality and life so quickly it is frightning and Kathy gives us a clear vision of her before life and the sudden changes that take place after the first symptoms appear. Kathy describes a young woman of strong faith with a loving family and much promise for the future with a caring boyfriend. Suddenly life changes for all involved and every day is filled with dealing with her illness and the medical communities. The faithful family stays with her through every hospital stay and diagnosis, questioning and advocating for her care and treatment. It is a truly frightening yet inspiring account of the dedication,love and faith in God that she will be returned to health. The team work of family and friends and people who did not even know Alysa was a glowing testament to the power of strong faith. Kathy includes pictures of the actual people and time line involved, and this helps to visualize the story. The actual daily entries of family members adds to the drama and reality of her situation. Thankfully there is a happy ending to the story and it makes you wonder about real miracles while affirming faith in the power of patient advocacy and dedicated health professionals.

Nicky Armstrong's young son, Jesse, had a hemispherectomy (removal of one half of his brain) after a prolonged and disruptive seizure disorder caused by Rasmussen's Syndrome. For families considering neurosurgery, this family's story should be on the "consider reading" list.

Yes, it is stressful to read about rudeness and contriteness encountered in the medical field. And yes, reading about a child's battered body from both seizures and drugs is not pleasant. But between these pages lie the reality of a disease and the opposing sides of an impossible decision.

While Rasmussen's appears to be a viral, contracted disease, and is in that regard dissimilar from other disorders effecting the brain, the ordeals with medial professionals, medical institutions, medications, research, and the meticulous weighing of conclusions are similar. How one family coped, and at times did not cope, is both reassuring and frightening. Until we live in an ideal world where children are spared the pain and cruelty of diseases like Rasmussen's, we can be appreciative that families such as the Armstrongs have the courage that comes from deeply loving a child to share their story simply and honestly.

Being a survivor I could definately understand what Laurie Winn Carlson was saying. I just more people could. Encephalitis is a strange illness, right, Laurie? Why did you even write this book? Are you a survivor? I run an email support group (if anyone is interested go to:

I happened to appreciate the author's view of what witchcraft really may have been. As a survivor of encephalitis (HSE), I know first hand that your personality changes overnight (or, right after you wake up). Most doctors today can't diagnose encephalitis so I can just imagine what brain-damaged people must have been perceived as back then. Than you for opening others' eyes.

The author's hypothesis is simple enough: The frightening "fits" of accusers during the 1692 Salem witchcraft crisis were caused by an outbreak of encephalitis lethargica, a neurological disorder popularized in Oliver Sacks' 1973 book Awakenings. (A film version starring Robin Williams and Robert De Nero was released in 1990.)

As a former cell biologist, I'm well-disposed to considering microorganisms and disease as the moving force of history. (See Hans Zinsser's classic, Rats, Lice, and History: being a study in biography, which, after twelve preliminary chapters indispensable for the preparation of the lay reader, deals with the life history of typhus fever.) In this case however, the author fails to make the case.

There were a few things that prejudiced me against this book: publication by a small house (Ivan R. Dee); description of the author as an "independent scholar," somehow implying other scholars aren't; a noticeable disdain for the entire field of psychology; and, inclusion of material that is at best tangential, at worst, irrelevant. For example, there is an afterword titled Satanic Possession and Christian Beliefs outlining how to differentiate between mental illness and demonic possession. The mere possibility that there is any reality to demonic possession is antithetical to the author's hypothesis. Chapter Seven, Alternate Outcomes, recounts experiences in New Hampshire a half century after the Salem witchcraft crisis to predict how the Salem crisis might have gone. A much better example would have been the similar crisis in Stamford Connecticut that was concurrent with that in Salem. (See Richard Godbeer's Escaping Salem: the other witch hunt of 1692.)

Encephalitis lethargica is a rare neurological disorder that appeared at about the same time as the 1918 influenza pandemic. Unlike influenza which is caused by a virus, the definitive cause of encephalitis lethargica is unknown. It might even be an immunological consequence of influenza. It's symptoms are varied and vague: high fever, headache, double vision, delayed physical and mental response, lethargy, coma (in acute cases), abnormal eye movements, upper body weakness, muscular pains, tremors, neck rigidity, and behavioral changes including psychosis. (See National Institute of Neurological Disorders and Stroke.)

Like Linnda Caporeal (Ergotism: The Satan Loosed in Salem?) , Carlson tries to shoehorn symptoms like "abnormal eye movements" and "psychoses" into a physical cause. A great deal of her argument is comparing experiences reported by accusers and their observers against possible symptoms for encephalitis lethargica. In many cases, commitment to "proving" her hypothesis ignores obvious, more mundane explanations. For example, descriptions of symptoms like "some suffered only a mild affliction, perhaps a heavy weight on their chests and legs while in bed, which left them momentarily paralyzed," or "people felt sudden weights on their chests at night so that they could not breathe ... complained about weight on their chests while in bed at night, an inability to speak," are well-known descriptions of the common experience called "sleep paralysis." They do not require special explanation.

The author is sometimes overreaching, if not plain wrong. For example, page 46 states:

[Midwives] were present in Salem and in colonial settlements, but there are no references to individuals or their families seeking them out for assistance in combating an epidemic. .... Some women who were tried as witches had performed as midwives, but they were not tried for any offense connected with their vocation.

Both Mary Beth Norton's In the Devil's Snare, and Richard Godbeer's Escaping Salem report midwives did indeed serve as a kind of "nurse practitioner:"

Women like [midwife] Sarah Bates emerged as experts from those communities of mutual care, their skills endorsed by the experience and gratitude of their neighbors rather than university degrees or formal apprenticeship. Goody Bates had a finely honed instinct for discerning what ailed a sick neighbor and was widely respected for her abilities.

But what's missing from A Fever in Salem is epidemiology. This is most evident in the "touch test" used to "prove" an accused was indeed a witch. An accuser would fall into a fit - and usually faint - at the mere sight of an accused witch. If the accuser revived at the touch of the accused, it "proved" the accused was a witch. Biological epidemics are not so easily turned on and off.

In some ways, A Fever in Salem is an example of cognitive dissonance. The author continually tries to extend her hypothesis, and thereby add validity, but at each step the exercise backfires. For example, a map reprinted from Robin Briggs' Witches & Neighbors: the social and cultural context of European witchcraft, shows areas of heavy, moderate, or light "persecution or important witch-hunts." Not surprisingly, dark centers spread into moderate, then lighter areas. Two pages after, a different map, with a four-fold change in scale, shows bird migration patterns. The author's conclusion?

... we see how closely they match up. Birds migrating from sub-equatorial western Africa fly directly over these areas as they head north each spring ... Migratory birds may have brought disease from western Africa to Europe, where a virus in their blood was extracted by arboviral mosquitoes who then fed on peasants and villagers.

Not only do they not match up closely (to my eyes), eight pages later Carlson suggests the vector might have been ticks.

In all, weighed in the balance, and found wanting. I would not recommend this book.

While she has a compelling argument, one based on sensationalism, her thesis fails to illustrate why the hysteria found in Salem did not occur in other communities that were afflicted with same microbiological phenomena. This monograph makes many assumptions and more often than not her arguments seem predetermined. The amatuer reader will enjoy her writing, but academic historians will be disappointed.

Laurie Carlson had a theory about Salem and supported it using an ambivalence for fact that you might experience gossiping with friends over a beer at Chili's. What a disappointment because it could have been interesting. Where do I start?

[1] All her research was done using books written in the 20th century. She is (sadly) unknowingly swayed by the biases of those 20th century authors. She wrongly accepts their judgements as fact, which annoyed me immensely. [2] She accepts outlandish courtroom pranks as genuine physical ailments. Why? Even by her own description, the 'fever' that was present in the colony subscribed to far more uncontrollable symptoms than repeating the words of the accused 'in chorus'. [3] She would have benefitted from reading documents from the period. Her understanding of the period is academic and lacks any genuine understanding of the events that unfolded. [4] The sentence that finally made me stop reading? "The first arrivals at Plymouth had been delighted to discover that the Indian population had already been wiped out by an epidemic... [any 3rd grader can tell you there were Indians in Plymouth]" an epidemic which she credits to the French in Nova Scotia, despite the fact that Europeans had been fishing the waters up and down the coastline for years and had even established outposts along the coast long before the puritans arrived in Plymouth. Sigh. [5] Please don't read this book.

This book works well for reasearching,but it is not worth the time to read on your own.