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The Forgetting: Understanding Alzheimer’s: A Biography of a Disease
David Shenk
Winner of the 2002 BMA Popular Medicine Book Prize: This is a haunting literary and scientific examination of Alzheimer’s disease and the race to find a cure.‘A truly remarkable book – the definitive work on Alzheimer’s, both in social and medical terms, “The Forgetting” is incisive, humane, never ponderous, full of dry humour and brilliantly written with quiet, unpretentious authority. As a layman with personal experience of “caring” for an Alzheimer’s sufferer I am well aware of the stages of the disease and its prognosis and ending. Shenk is excellent on all these, and in his reflections on memory and the individual, and the individual’s response to the progress of the disease. I can’t imagine a book on Alzheimer’s being better researched and understood, or presented with greater sympathy.’ John BayleyIn 1906 Alois Alzheimer dissected and examined the cerebral cortex of Auguste D’s brain and became the first scientist in medical history to link a specific brain pathology to behavioural changes. The disease named after him, turns otherwise active and healthy people into living ghosts. It is a rare condition for those in their 40s and 50s but 10% of the 65+ population suffers from it and 50% of the 85+. It is longevity’s revenge and as the baby boom generation drifts into its elderly years the number of Alzheimer’s victims is expected to quadruple, making it the fastest-growing disease in developed countries.As Adam Phillips writes in his foreword ‘This remarkable book will radically change our notions of looking after people and our assumptions about independence. Out of fear of mortality we have idealised health and youth and competence. “The Forgetting” reminds us among many other things that there is more to life than that.’Shenk’s history of Alzheimer’s is both poignant and scientific, grounded by the fundamental belief that memory forms the basis of our selves, our souls, and the meaning in our lives.
THE FORGETTING
Understanding Alzheimer’s:
A Biography of a Disease
DAVID SHENK
COPYRIGHT (#ulink_00fa72ff-f147-58a6-9cab-45f0da0a0a3c)
William Collins
An imprint of HarperCollinsPublishers Ltd. 1 London Bridge Street London SE1 9GF
www.harpercollins.co.uk (http://www.harpercollins.co.uk)
Published by Flamingo 2003
First published in Great Britain by HarperCollinsPublishers 2002
First published in the US by Doubleday 2001
Copyright © David Shenk 2001
David Shenk asserts the moral right to be identified as the author of this work
Several of the names and identifying characteristics
of the individuals depicted in this book have been changed to protect their privacy.
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Source ISBN: 9780006532088
Ebook Edition © DECEMBER 2013 ISBN: 9780007439669
Version: 2016-09-09
DEDICATION (#ulink_40ece7ca-92ae-50ab-a142-2dc07640cb00)
For Lucy
CONTENTS
Cover (#ub27f7759-823e-5ecb-af95-0d7b85875086)
Title Page (#u7ceeb983-460f-5adc-bbd3-b0d03099ebfe)
Copyright (#uef266ab4-cd61-555d-b436-df943c8ff464)
Dedication (#uc4fd414b-38a3-5b62-9845-9dd8b38f664d)
Prologue (#u5ec71841-8d4b-5d61-8045-cde0d82ef50b)
PART I EARLY STAGE (#u387b9076-b423-5f8b-b9d7-4332be1f728f)
1. I Have Lost Myself (#u40abecf0-ca95-5b51-ad60-b9926dfe13c6)
2. Bothered (#u5d56a072-375d-5214-9fc4-993cf00a6edb)
3. The God Who Forgot and the Man Who Could Not (#u37219ff7-6bdc-58d4-8d86-be180b0090b4)
4. The Race (#u8502a1e0-30a4-51eb-8053-cb72724625be)
5. Irrespective of Age (#litres_trial_promo)
6. A Most Loving Brother (#litres_trial_promo)
PART II MIDDLE STAGE (#litres_trial_promo)
7. Fumbling for the Name of My Wife (#litres_trial_promo)
8. Back to Birth (#litres_trial_promo)
9. National Institute of Alzheimer’s (#litres_trial_promo)
10. Ten Thousand Feet, at Ten O’Clock at Night (#litres_trial_promo)
11. A World of Struldbruggs (#litres_trial_promo)
12. Humanize the Mouse (#litres_trial_promo)
13. We Hope to Radio Back to Earth Images of Beauty Never Seen (#litres_trial_promo)
PART III END STAGE (#litres_trial_promo)
14. Breakthrough? (#litres_trial_promo)
15. One Thousand Subtractions (#litres_trial_promo)
16. Things to Avoid (#litres_trial_promo)
17. The Mice Are Smarter (#litres_trial_promo)
Epilogue (#litres_trial_promo)
Resources for Patients and Families (#litres_trial_promo)
Sources (#litres_trial_promo)
Index (#litres_trial_promo)
Acknowledgments (#litres_trial_promo)
About the Author (#litres_trial_promo)
Praise (#litres_trial_promo)
About the Publisher (#litres_trial_promo)
LEAR: Does any here know me? This is not Lear.
Does Lear walk thus, speak thus? Where are his eyes?
Either his notion weakens, his discernings
Are lethargied—Ha! Waking? ’Tis not so.
Who is it that can tell me who I am?
FOOL: Lear’s shadow.
—William Shakespeare, King Lear
PROLOGUE (#udd8d25af-14c1-5d3d-813c-5cbb6f9f3523)
“When I was younger,” Mark Twain quipped near the end of his life, “I could remember anything, whether it had happened or not; but my faculties are decaying now and soon I shall be so I cannot remember any but the things that never happened.”
At age seventy-two, Twain’s memory and wit were intact. But behind his remark lay a grim recollection of another celebrated writer’s true decline. In December 1877, Twain had come to Boston at the invitation of William Dean Howells, editor of the Atlantic Monthly, to satirize a group of Brahmin intellectuals. Among Twain’s targets that night was the father of American Transcendentalism, Ralph Waldo Emerson.
It was after midnight when Twain finally took to the floor at the Hotel Brunswick to spin his yarn. He told the venerable crowd about a lonely miner who had been victimized by three tramps claiming to be famous American writers. The literary outlaws stormed into the miner’s cabin, ate his beans and bacon, guzzled his whiskey, and stole his only pair of boots. They played cards and fought bitterly. One of the tramps called himself Emerson.
The point of the skit was to poke some harmless fun at Emerson by corrupting some of his noble expressions. As they played cards at the climax of the story, the Emerson hobo spat out contorted fragments of his poem “Brahma.” A mystical paean to immortality, the original included these stanzas:
If the red slayer think he slays,
Or if the slain think he is slain,
They know not well the subtle ways
I keep, and pass, and turn again.
They reckon ill who leave me out;
When me they fly, I am the wings;
I am the doubter and the doubt,
And I the hymn the Brahmin sings.
Twain twisted the verse into drunken poker banter:
I am the doubter and the doubt—
They reckon ill who leave me out,
They know not well the subtle ways I keep,
I pass and deal again.
An elegant master of spoof, Twain was revered around the world as the funniest living man. But on this important night, his material bombed. From the start. Twain drew only silence and quizzical looks, most prominently from Emerson himself. At the finish, Twain later recalled, there “fell a silence weighing many tons to the square inch.” He was humiliated. Shortly afterward, he sent a letter of apology to Emerson.
Only then did Twain learn of the hidden backdrop to his performance: Emerson had been present only in body, not in mind. Emerson’s dead silence and flat affect, Twain discovered, was a function of neither offense nor boredom. As his daughter Ellen wrote to Twain in reply, it was simply that he had not understood a word of what Twain was saying.
At age seventy-four, this was no longer the Ralph Waldo Emerson who had written “Self-Reliance” and Nature; who had said, “Insist on yourself; never imitate”; who had mentored Henry David Thoreau; the Emerson of whom James Russell Lowell had said, “When one meets him the Fall of Adam seems a false report.”
This was now a very different man, a waning crescent, caught in the middle stages of a slow, progressive memory disorder that had ravaged his concentration and short-term memory and so dulled his perceptions that he was no longer able to understand what he read or follow a conversation.
“To my father,” Ellen wrote to Twain of the performance, “it is as if it had not been; he never quite heard, never quite understood it, and he forgets easily and entirely.”
One of the great minds in Western civilization was wasting away inside a still vigorous body, and there was nothing that anyone could hope to do about it.
Taos, New Mexico: March 1999
They came from Melbourne, Mannheim, St. Louis, London, and Kalamazoo; from Lexington, Stockholm, Dallas, Glasgow, Toronto, and Kuopio. From Tokyo, Zurich, and Palo Alto.
Some took two flights, others three or four, followed by a winding three-hour van ride from the floodplains of Albuquerque, up through the high desert terrain of Los Alamos, past the Sandia mountains, past the Jemez volcanic range, past the Camel Rock, Cities of Gold, and OK casinos, up near the foothills of the Sangre de Cristo mountains.
More than two hundred molecular biologists gathered in the small but sprawling city of Taos, amidst the adobe homes and green-chile quesadillas, to share data and hypotheses. This high-altitude, remote desert seemed like a strange place to fight a threatening disease. But specialists at the biannual conference “Molecular Mechanisms in Alzheimer’s Disease” needed a refuge from their routine obligations.
For four and a half days they met in Bataan Hall, an old ballroom converted into a civic center. The room had once been used as a shipping-off point for soldiers in World War II, and later named in memory of those same soldiers’ wretched ordeal in the infamous Bataan Death March. Some five hundred prisoners died each day on that trek, about the same number now dying each day in the U.S. from Alzheimer’s disease.
At 8:00 P.M. on the first evening, Stanley Prusiner, a biologist at the University of California at San Francisco and a 1997 recipient of the Nobel Prize in medicine, rose to give the keynote address. “I can’t compete with Monica,” he began with a shrug. “But I think we all know that we wouldn’t learn anything new.”
Barbara Walters’ much-anticipated TV interview with Monica Lewinsky was starting to air on ABC at that very moment, which further fueled the sense of isolation. The local support staff had just raced home to their televisions to catch the well-lighted promotion for the million-dollar book about the sordid affair with the needy President.
No TVs here. The scientists in this large, windowless chamber were distracted by something else: Alzheimer’s disease was about to become an epidemic. Known as senility for thousands of years, Alzheimer’s had only in the past few decades become a major health problem. Five million Americans and perhaps 15 million people worldwide now had the incurable disease, and those numbers would soon look attractive. Beginning in 2011, the first of the baby boomers would turn sixty-five and start to unravel in significant numbers. By 2050, about 15 million people in the U.S. alone would have Alzheimer’s, at an annual cost of as much as $700 billion.
Other industrialized nations faced the same trends. In Japan, one in three would be elderly by 2050. In Canada, the number of elderly would increase by 50 percent while the working-age population increased by just 2 percent. In Britain and elsewhere in industrialized Europe, eighty-five-and-over would continue to be the fastest growing segment of the population. “We have to solve this problem, or it’s going to overwhelm us,” said Zaven Khachaturian, former director of the Alzheimer’s Research Office at the National Institutes of Health. Alzheimer’s had already become a costly and miserable fixture in society. Unless something was done to stop the disease, it would soon become one of the defining characteristics of civilization, one of the cornerstones of the human experience.
They were here to solve this problem.
PART I (#ulink_facaa3b0-7fdb-5732-b637-12717974c636)
