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The Forgetting: Alzheimer's: Portrait of an Epidemic [Paperback]

by David Shenk
4.3 out of 5 stars  See all reviews (47 customer reviews)

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Editorial Reviews

Amazon.com Review

First attracted to his subject by its horrific ability to destroy the human mind and body, journalist David Shenk ultimately finds reasons to accept Alzheimer's disease--and almost forgive it--in The Forgetting. Shenk describes his work as a biography, the life story of a biological outlaw that sends victims "on a slow but certain trajectory toward forgetting and death." But his illuminating portrait of this growing epidemic offers more than a basic chronology. Shenk begins with the disease's christening in 1906, when German physician Alois Alzheimer discovered mysterious tangles and plaques in the brain of a dead woman who in life had suffered severe memory loss and dementia. The tale unfolds to reveal a host of intriguing players: struggling scientists (the clever, the bullheaded, and the pharmaceutically endowed), politicians divided by opposing priorities, exhausted caregivers, and patients whose biological clocks virtually tick backward over an average eight-year period. It includes impossible twists: longer life expectancies and successful treatments for other diseases mean more cases of Alzheimer's will inevitably occur. Shenk's graceful synthesis of personal accounts (from Plato to Reagan) with a century-long search for answers and cures leads him to an impressive conclusion. Perhaps Alzheimer's disease is much like winter: "Once it is gone, we'll face less hardship, but we'll also have lost an important lens on life." --Liane Thomas --This text refers to an out of print or unavailable edition of this title.

From Publishers Weekly

With grace and precision, Shenk (Data Smog), a journalist and occasional NPR commentator, presents a lyric biography of Alzheimer's, "a condition specific to humans and as old as humanity." At one time, doctors thought senility, or dementia, was an inevitable fact of growing older. Now they know that Alzheimer's is a specific, formidable disease that threatens to reach epidemic proportions within the next 50 years. The disease is named for the neurologist who, in 1906, first noticed, in the brain of an autopsied patient, the telltale plaques and tangles that strangle the brain's neurons. Shenk presents a thoughtful and complex rumination on many aspects of Alzheimer's, including anecdotes about the memory loss experienced by Ronald Reagan, Ralph Waldo Emerson and E.B. White. He recounts the tales of caregivers, many of whom become clinically depressed and who, along with physicians, draw an analogy between the developing skills of a child and the decrease in cognitive ability that besets Alzheimer's patients. The author delves deeply into scientific research and explains that though there is as yet no cure, a recently developed vaccine holds great promise for the future. However, he warns, scientific inquiry could be impeded by fierce competition for research dollars. Doctors can now recognize an early stage of "probable Alzheimer's," which means that patients who are slowly sinking into its depths can understand their condition and its destructive path. Shenk movingly recounts a conversation he had with one such patient, who shares interesting ideas for rehabilitative conditioning to slow down his mental deterioration. Agent, Sloan Harris. (On-sale: Sept. 4)

Copyright 2001 Cahners Business Information, Inc.

--This text refers to an out of print or unavailable edition of this title.

From Library Journal

The price humans pay for increased longevity is a greater likelihood of developing degenerative diseases. Among the most devastating is Alzheimer's, predicted to reach epidemic proportions by midcentury. Journalist Shenk's "biography" of Alzheimer's disease explores the nature of the baffling plaques and tangles, discovered by Alois Alzheimer in 1907, that eventually consume the brains of victims, erasing a lifetime of memories. Notable sufferers whose stories Shenk tells here include Ronald Regan, Ralph Waldo Emerson, and Willem de Kooning; there are also personal accounts from the less famous he met in Internet chatrooms. Shenk also chronicles tales of driven researchers, hellbent to be the first to unlock the disease's secrets and the riches to be made by drug manufacturers hungry for a moneymaking cure. His engrossing book draws on an amazing array of scientific, historical, ethical, religious, mythological, literary, and artistic sources and is filled with fascinating characters and first-rate explanations of the science behind the disease. (His technical discussion of memory and other aspects of the disease is much clearer than Charles Pierce's in Hard To Forget, LJ 4/15/00.) A unique and welcome addition to any scientific, aging, or Alzheimer's collection.
- Karen McNally Bensing, Benjamin Rose Inst. Lib., Cleveland
Copyright 2001 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.

From Booklist

Shenk's "portrait of an epidemic" traces the development of knowledge about Alzheimer's in the work of individuals and such groups as the National Institute of Aging; describes various tests that help in identifying possible sufferers; and discusses the early, middle, and end stages of the malady. The concept of childhood in reverse best reflects the progression of this disease, which, ironically, can seem a consequence of lengthened human life spans: "By extending our lives, we achieve suffering." Shenk says the most important point to remember about Alzheimer's is that each time a memory is recalled, new brain "trails" are made; in fact, the feeling of everything being new may be one of an Alzheimer's patient's few consolations. There is no cure and little in the way of treatment for Alzheimer's, but new approaches in research do appear hopeful. Lucid and well organized, this is one of the best books on this increasingly prevalent illness. William Beatty
Copyright © American Library Association. All rights reserved --This text refers to an out of print or unavailable edition of this title.

Review

“Riveting . . . Superb . . . A wonderfully readable history of the brain and of memory.” –San Francisco Chronicle Book Review

“A remarkable addition to the literature of the science of the mind . . . Shenk has drawn together threads of neurobiology, art history, and psychology into a literary portrait of Alzheimer’s disease perfectly balanced between sorrow and wonder, devastation and awe.” –Los Angeles Times Book Review

“An elegant new book . . . Shenk rises above the usual rhetoric of combat and cure, enabling us to confront Alzheimer's not as an alien pestilence but as part of the human condition.” –Newsweek

“Written with a researcher’s attention to detail and a storyteller’s ear.” –The New York Times Book Review

“Destined to be a classic . . . Shenk’s guided tour is free of medical jargon, filled instead with clear and sometimes memorable phrasing.” –The Seattle Times

“A fascinating meditation . . . Shenk has found something beautiful and soulful in a condition that forces people to live in the perpetual ‘now.’ . . . Deeply affecting.” —The Washington Post Book World

“A graceful, masterful portrait of [the] illness. . . Readers can’t help but be taken by Shenk’s humanity and compassion, which brim throughout.” –The Los Angeles Times

“Compelling and immensely humane . . . Shenk’s integration of historical and scientific information and personal stories makes for an absorbing read.” —Newsday

“A dazzling literary and scientific history of Alzheimer’s disease.” —Detroit Free Press

“A brilliant and quirky new book on Alzheimer’s [that] offers food for thought on the unthinkable and a new, deeper understanding of the coming epidemic.” —Salon.com

“Carefully researched and engagingly written.” —The Wall Street Journal

“Shenk makes the science understandable and recounts personal stories that are both moving and illuminating. . . . A fascinating account of what memories are made of.” —Business Week

“An excellent new book.” —The New Yorker

“Beautifully written and philosophically minded.” —Time Out New York

“Fascinating . . . As good as the science in this book is, it takes a back seat to Shenk’s eloquent reflections on the meaning of memory and aging, and their connection to our sense of self.” —The Washington Monthly

“Absorbing and enlightening...an engrossing story.” –The Times Literary Supplement (London)

“Told plainly and movingly. . . . Anyone appalled by the possibility of losing their mind, or who has watched another’s being stolen by Alzheimer’s, should read this excellent book: I guess that’s all of us.”–New Scientist

“Shenk is a wonderful writer on science....He has an eye for the social and financial forces that shape scientific interests and he brings key players, whether proteins or people, to dramatic life.” –The Independent (London)

“Highly recommended.” –Journal of the American Medical Association

“The definitive work on Alzheimer’s. A truly remarkable book.”–John Bayley, author of Elegy for Iris

From the Inside Flap

Afflicting nearly half of all persons over the age of 85, Alzheimer?s disease kills nearly 100,000 Americas a year as it insidiously robs them of their memory and wreaks havoc on the lives of their loved ones. It was once minimized and misunderstood as forgetfulness in the elderly, but Alzheimer?s is now at the forefront of many medical and scientific agendas, for as the world?s population ages, the disease will kill millions more and touch the lives of virtually everyone.

The Forgetting is a scrupulously researched, multilayered analysis of Alzheimer?s and its social, medical, and spiritual implications. David Shenk presents us with much more than a detailed explanation of its causes and effects and the search for a cure. He movingly captures the disease?s impact on its victims and their families, and he looks back through history, explaining how Alzheimer?s most likely afflicted such figures as Jonathan Swift, Ralph Waldo Emerson,and William de Kooning. The result is a searing, powerfully engaging account of Alzheimer?s disease, offering a grim but sympathetic and ultimately encouraging portrait.

From the Back Cover

“Riveting . . . Superb . . . A wonderfully readable history of the brain and of memory.” –San Francisco Chronicle Book Review

“A remarkable addition to the literature of the science of the mind . . . Shenk has drawn together threads of neurobiology, art history, and psychology into a literary portrait of Alzheimer’s disease perfectly balanced between sorrow and wonder, devastation and awe.” –Los Angeles Times Book Review

“An elegant new book . . . Shenk rises above the usual rhetoric of combat and cure, enabling us to confront Alzheimer's not as an alien pestilence but as part of the human condition.” –Newsweek

“Written with a researcher’s attention to detail and a storyteller’s ear.” –The New York Times Book Review

“Destined to be a classic . . . Shenk’s guided tour is free of medical jargon, filled instead with clear and sometimes memorable phrasing.” –The Seattle Times

“A fascinating meditation . . . Shenk has found something beautiful and soulful in a condition that forces people to live in the perpetual ‘now.’ . . . Deeply affecting.” —The Washington Post Book World

“A graceful, masterful portrait of [the] illness. . . Readers can’t help but be taken by Shenk’s humanity and compassion, which brim throughout.” –The Los Angeles Times

“Compelling and immensely humane . . . Shenk’s integration of historical and scientific information and personal stories makes for an absorbing read.” —Newsday

“A dazzling literary and scientific history of Alzheimer’s disease.” —Detroit Free Press

“A brilliant and quirky new book on Alzheimer’s [that] offers food for thought on the unthinkable and a new, deeper understanding of the coming epidemic.” —Salon.com

“Carefully researched and engagingly written.” —The Wall Street Journal

“Shenk makes the science understandable and recounts personal stories that are both moving and illuminating. . . . A fascinating account of what memories are made of.” —Business Week

“An excellent new book.” —The New Yorker

“Beautifully written and philosophically minded.” —Time Out New York

“Fascinating . . . As good as the science in this book is, it takes a back seat to Shenk’s eloquent reflections on the meaning of memory and aging, and their connection to our sense of self.” —The Washington Monthly

“Absorbing and enlightening...an engrossing story.” –The Times Literary Supplement (London)

“Told plainly and movingly. . . . Anyone appalled by the possibility of losing their mind, or who has watched another’s being stolen by Alzheimer’s, should read this excellent book: I guess that’s all of us.”–New Scientist

“Shenk is a wonderful writer on science....He has an eye for the social and financial forces that shape scientific interests and he brings key players, whether proteins or people, to dramatic life.” –The Independent (London)

“Highly recommended.” –Journal of the American Medical Association

“The definitive work on Alzheimer’s. A truly remarkable book.”–John Bayley, author of Elegy for Iris

About the Author

David Shenk is the author of three previous books, including Data Smog, which The New York Times hailed as an “indispensable guide to the big picture of technology’s cultural impact.” A former fellow at the Freedom Forum Media Studies Center at Columbia University, he has written for Harper’s, Wired, Salon, The New Republic, The Washington Post, and The New Yorker, and is an occasional commentator for NPR’s All Things Considered. He lives in Brooklyn, New York, with his wife and daughter.

Excerpt. © Reprinted by permission. All rights reserved.

Chapter 1

I Have Lost Myself

A healthy, mature human brain is roughly the size and shape of two adult fists, closed and pressed together at the knuckles. Weighing three pounds, it consists mainly of about a hundred billion nerve cells--neurons--linked to one another in about one hundred trillion separate pathways. It is by far the most complicated system known to exist in nature or civilization, a control center for the coordination of breathing, swallowing, pressure, pain, fear, arousal, sensory perception, muscular movement, abstract thought, identity, mood, and a varied suite of memories in a symphony that is partly predetermined and partly adaptable on the fly. The brain is so ridiculously complex, in fact, that in considering it in any depth one can only reasonably wonder why it works so well so much of the time.

Mostly, we don't think about it at all. We simply take this nearly silent, ludicrously powerful electrochemical engine for granted. We feed it, try not to smash it too hard against walls or windshields, and let it work its magic for us.

Only when it begins to fail in some way, only then are we surprised, devastated, and in awe.

On November 25, 1901, a fifty-one-year-old woman with no personal or family history of mental illness was admitted to a psychiatric hospital in Frankfurt, Germany, by her husband, who could no longer ignore or hide quirks and lapses that had overtaken her in recent months. First there were unexplainable bursts of anger, and then a strange series of memory problems. She became increasingly unable to locate things in her own home and began to make surprising mistakes in the kitchen. By the time she arrived at Stadtische Irrenanstalt, the Frankfurt Hospital for the Mentally Ill and Epileptics, her condition was as severe as it was curious. The attending doctor, senior physician Alois Alzheimer, began the new file with these notes in the old German Sutterlin script.

She sits on the bed with a helpless expression.

"What is your name?"

Auguste.

"Last name?"

Auguste.

"What is your husband's name?"

Auguste, I think.

"How long have you been here?"

(She seems to be trying to remember.)

Three weeks.

It was her second day in the hospital. Dr. Alzheimer, a thirty-seven-year-old neuropathologist and clinician from the small Bavarian village of Markbreit-am-Main, observed in his new patient a remarkable cluster of symptoms: severe disorientation, reduced comprehension, aphasia (language impairment), paranoia, hallucinations, and a short term memory so incapacitated that when he spoke her full-name, Frau Auguste D------, and asked her to write it down, the patient got only as far as "Frau" before needing the doctor to repeat the rest.

He spoke her name again. She wrote "Augu" and again stopped.

When Alzheimer prompted her a third time, she was able to write her entire first name and the initial "D" before finally giving up, telling the doctor, "I have lost myself."

Her condition did not improve. It became apparent that there was nothing that anyone at this or any other hospital could do for Frau D. except to insure her safety and try to keep her as clean and comfortable as possible for the rest of her days. Over the next four and a half years, she became increasingly disoriented, delusional, and incoherent. She was often hostile.

"Her gestures showed a complete helplessness," Alzheimer later noted in a published report. "She was disoriented as to time and place. From time to time she would state that she did not understand anything, that she felt confused and totally lost. Sometimes she considered the coming of the doctor as an official visit and apologized for not having finished her work, but other times she would start to yell out of the fear that the doctor wanted to operate on her [or] damage her woman's honor. From time to time she was completely delirious, dragging her blankets and sheets to and fro, calling for her husband and daughter, and seeming to have auditory hallucinations. Often she would scream for hours and hours in a horrible voice."

By November 1904, three and a half years into her illness, Auguste D. was bedridden, incontinent, and largely immobile. Occasionally, she busied herself with her bed clothes. Notes from October 1905 indicate that she had become permanently curled up in a fetal position, with her knees drawn up to her chest, muttering but unable to speak, and requiring assistance to be fed.

What was this strange disease that would take an otherwise healthy middle-aged woman and slowly--very slowly, as measured against most disease models--peel away, layer by layer, her ability to remember, to communicate her thoughts and finally to understand the world around her? What most struck Alzheimer, an experienced diagnostician, was that this condition could not fit neatly into any of the standard psychiatric boxes. The symptoms of Auguste D. did not present themselves as a case of acute delirium or the consequence of a stroke; both would have come on more suddenly. Nor was this the general paresis--mood changes, hyperactive reflexes, hallucinations--that can set in during the late stages of syphilis. She was clearly not a victim of dementia praecox (what we now call schizophrenia), or Parkinson's palsy, or
Friedreich's ataxia, or Huntington's disease, or Korsakoff's syndrome, or any of the other well-recognized neurological disorders of the day, disorders that Alzheimer routinely treated in his ward. One of the fundamental elements of diagnostic medicine has always been the exercise of exclusion, to systematically rule out whatever can be ruled out and then see what possibilities are left standing. But Alzheimer had nothing left.

What the fifty-one-year-old Auguste D.'s condition did strongly evoke was a well-known ailment among the elderly: a sharp unraveling of memory and mind that had, for more than five thousand years, been accepted by doctors and philosophers as a routine consequence of aging.

History is stacked with colorful, poignant accounts of the elderly behaving in strange ways before they die, losing connection with their memories and the world around them, making rash decisions, acting with the impetuousness and irresponsibility of children. Plato insisted that those suffering from "the influence of extreme old age" should be excused from the commission of the crimes of sacrilege, treachery, and treason. Cicero lamented the folly of "frivolous" old men. Homer, Aristotle, Maimonides, Chaucer, Thackeray, Boswell, Pope, and Swift all wrote of a distressing feebleness of mind that infected those of advancing years.

"Old age," wrote Roger Bacon, "is the home of forgetfulness."

Known as morosis in Greek, oblivio and dementia in Latin, dotage in Middle English, d*mence in French, and fatuity in eighteenth-century English, the condition was definitively termed senile dementia in 1838 by the French psychiatrist Jean ftienne Esquirol. In a depiction any doctor or caregiver would recognize today, Esquirol wrote: "Senile dementia is established slowly. It commences with enfeeblement of memory, particularly the memory of recent impressions."

But that was senile dementia. What was this? Alois Alzheimer wanted to know. Why did a fifty-one-year-old appear to be going senile? How could Auguste D. be suffering from the influence of extreme old age?

We are the sum of our memories. Everything we know, everything we perceive, every movement we make is shaped by them. "The truth is," Friedrich Nietzsche wrote, "that, in the process by which the human being, in thinking, reflecting, comparing, separating, and combining . . . inside that surrounding misty cloud a bright gleaming beam of light arises, only then, through the power of using the past for living and making history out of what has happened, does a person first become a person."

The Austrian psychiatrist Viktor Frankl made much the same point in Man's Search for Meaning, his memoir of experiences as a concentration camp inmate. Frankl recalled trying to lift the spirits of his fellow camp inmates on an especially awful day in Dachau: "I did not only talk of the future and the veil which was drawn over it. I also mentioned the past; all its joys, and how its light shone even in the present darkness. [I quoted] a poet . . . who had written, Was Du erlebst, kann keine Macht der Welt Dir rauben. (What you have experienced, no power on earth can take from you). Not only our experiences, but all we have done, whatever great thoughts we may have had and all we have suffered, all this is not lost, though it is past; we have brought it into being. Having been is a kind of being, and perhaps the surest kind."

Emerson was also fascinated by memory--how it worked, why it failed, the ways it shaped human consciousness. Memory, he offered about a decade or so before his own troubles first appeared, is "the cement, the bitumen, the matrix in which the other faculties are embedded . . . without it all life and thought were an unrelated succession." While he constructed an elaborate external memory system in topical notebooks, filling thousands of pages of facts and observations that were intricately cross-referenced and indexed, Emerson was also known for his own keen internal memory. He could recite by heart all of Milton's "Lycidas" and much of Wordsworth, and made it a regular practice to recite poetry to his children on their walks. His journal entries depict an enchantment with the memory feats of others.

He kept a list:

Frederic the Great knew every bottle in his cellar. Magliabecchi wrote off his book from memory. Seneca could say 2,000 words in one hearing. L. Scipio knew the name of every man in Rome. Judge Parsons knew all his dockets next year. Themistocles knew the names of all the Athenians.

"We estimate a man by how much ...
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