David Shenk - The Forgetting - Understanding Alzheimer’s - A Biography of a Disease

DAVID SHENK

William Collins

An imprint of HarperCollins Publishers Ltd. 1 London Bridge Street London SE1 9GF

www.harpercollins.co.uk

Published by Flamingo 2003

First published in Great Britain by HarperCollins Publishers 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

For Lucy

Cover

Title Page

Copyright

Dedication

Prologue

PART I EARLY STAGE

1. I Have Lost Myself

2. Bothered

3. The God Who Forgot and the Man Who Could Not

4. The Race

5. Irrespective of Age

6. A Most Loving Brother

PART II MIDDLE STAGE

7. Fumbling for the Name of My Wife

8. Back to Birth

9. National Institute of Alzheimer’s

10. Ten Thousand Feet, at Ten O’Clock at Night

11. A World of Struldbruggs

12. Humanize the Mouse

13. We Hope to Radio Back to Earth Images of Beauty Never Seen

PART III END STAGE

14. Breakthrough?

15. One Thousand Subtractions

16. Things to Avoid

17. The Mice Are Smarter

Epilogue

Resources for Patients and Families

Sources

Index

Acknowledgments

About the Author

Praise

About the Publisher

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

“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.