The Forgetting
Page 21
ACKNOWLEDGMENTS
There is a woman whom I have never met, whose name I do not know. Let me acknowledge her first, because it was her forgetting that started all this. Eating lunch alone one day in my neighborhood taqueria, I found myself absorbed by a nearby conversation about this woman with early-onset Alzheimer’s who could no longer recognize her own husband. I closed my eyes and tried to imagine myself as that husband, and then stumbled back to my office determined to learn more about this disease.
Listening to public radio in my kitchen, I have heard authors from time to time insist that they didn’t really choose their book topics—that it’s more like the books chose them. This is not the sort of thing I expected would ever happen to me.
I am blessed to have Sloan Harris for a literary agent. This book simply could not have happened without him. Much of Sloan’s insight into this project, sadly, came out of firsthand experience with the decline of his own grandmother, Louise Walker, to whom I also want to pay tribute.
Bill Thomas, at Doubleday, provided the perfect nest for the fledgling work, and proved to be a masterful and nurturing editor.
I am indebted to Karen Duff, at the Nathan Kline Institute, for her patient tutorials on the molecular biology of Alzheimer’s and the politics of that community.
For help unearthing details of Emerson’s decline, thanks to Randall Albright, Howard Callaway, Morris Friedell, Roberto Piccoli, and Joel Porte.
Excavation of the ancient history of senility was facilitated by John Baines, Peter Butrica, Lawrence H. Feldman, Joan Ferry, Carol Fleming-Huskisson, François Hinard, Allen Koenigsberg, Julie Langford-Johnson, Russell A. Johnson, James Lawrence, Gert-Jan Lokhorst, David Lupher, Willard L. Marmelzat, Michael Meckler, Ernest Moncada, Tim Parkin, Elaine Perry, George Pesely, James M. Pfundstein, Gil Renberg, Patrick Rourke, Roy Starling, Juergen Stowasser, and Carl Widstrand.
Steven Johnson and James Ryerson, both of Feed magazine, spurred the material on memory molecules and Luria’s patient S. András Szántó advanced my understanding of the relationship between identity and the artistic process for the chapter on de Kooning.
Thanks to Jed Levine, Tony Yang Lewis, Julie Rosenberg, Stefanie Roth, Judy Joseph, and Irving Brickman for a gentle introduction to the world of caregiving. I am particularly grateful to Irving for his kindness, conferred even as he faced the cancer that ended his life before the completion of this book.
Carla Flaherty generously shared her journal about her father’s decline. Dan Paris, Geri Hall, and dozens of other regulars on the Alzheimer List gave me a better education than I could have hoped for. Thanks also to Julie Miller at the Alzheimer Association.
Heiko Braak and Kelly Del Tredici supplied key neuropathological papers, and Dorothy Rice furnished economic data and estimates. For historical guidance, thanks to Matthias M. Weber. Paulette Michaud and Jeffrey Toward were generous to share their transcripts of interviews with early-stage patients. John Trojanowski and Virginia Lee spent some of their valuable time educating a neophyte.
I am grateful to Neil Levi for sharing his translation-in-progress of a biography of Alois Alzheimer. Michael Strong let me read his fascinating dissertation on James Joyce and neuroscience. Richard Gehr opened the door to Nietzsche.
Bruce Feiler, Gersh Kuntzman, Andrew Shapiro, and Eamon Dolan are cherished confidants and advisers. Richard Shenk gave invaluable support. Thanks to Joanne Cohen and Sidney Cohen and Peggy and David Beers for reading early drafts. I am also very grateful to Teri Steinberg for her powerful encouragement and insight, and to Kendra Harpster for editorial assistance. Thanks to Apple Computer for so quickly replacing my laptop after it mysteriously caught on fire.
For his music, I thank Keith Jarrett.
For help with the manuscript in its late stages, I am indebted to Andrew Hoffman, Linda Steinman, Roy Kreitner, Daniel Radosh, Gina Duclayan, Tom Inck, Ivan Oransky, and Tom Inglesby. Nick Moore, John Holzman, and Jon Shenk served as much-needed compasses in the harrowing final days.
Word by word, chapter by chapter, my brother Joshua Wolf Shenk helped me make this a much better book.
As ever, I am grateful to my wife, Alexandra Beers, for her wisdom and friendship. This book was written in the glowing home I share with Alex and the incomparable Lucy Beers Shenk. Lucy: I’m all finished with my chapters now. Let’s go play.
RESOURCES FOR PATIENTS AND FAMILIES
For families stranded on the island of Alzheimer’s disease, the initial feeling can be one of utter desolation. Many soon discover, though, that there are a host of extraordinary provisions available—medical and social services, support groups, books, and products for safety and security—that can make the long stay somewhat less perplexing and more comfortable. Below is a selected guide to some of these aids. (For more information, including medical research updates and links to the surfeit of online resources, visit www.theforgetting.com on the World Wide Web.)
PHONE HOTLINES
Alzheimer’s Society
0845 300 0336
www.alzheimers.org.uk
Provides a full range of information and pointers to local services in England, Wales and Northern Ireland
Alzheimer Scotland - Action on Dementia
freephone helpline 0800 317817
www.alzscot.org
Provides a full range of information and pointers to local services in Scotland
Carers National Association
0207 490 8818
Provides information on all aspects of caring
Age Concern England
0208 679 8000
Provides information and advice for older people, particularly on eligibility for social/health benefits
Alzheimer’s Disease International
0207 620 3011
www.alz.co.uk
Provides contact details for Alzheimer Associations throughout the world
BOOKS
General
Alzheimer’s at Your Fingertips, by Hary Cayton, Dr. Nori Graham and Dr. James Warner. Class Publishing, 1998
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L. Mace and Peter V. Rabins. John’s Hopkins University Press, 2001.
Introducing Dementia: The Essential Facts and Issues of Care, by David Sutcliffe. Age Concern Books, 2001.
Living with Alzheimer’s Disease and Similar Conditions, by Gordon Wilcock. Penguin Books, 1999
For children
What’s Wrong With Grandma? A Family’s Experience with Alzheimer’s, by Margaret Shawer and Jeffrey K. Bagby. Prometheus Books, 1996.
Financial/Legal
Managing Other People’s Money, by Penny Letts. Age Concern Books, 1998.
Your Rights 2000–2001: A Guide to Money Benefits for Older People, by Sally West. Age. Concern Books, 2000.
Nutrition
Soft Options; For Adults Who Have Difficulty Chewing, by Rita Greer. Souvenir Press, 1998
Memoirs
Iris: A Memoir of Iris Murdoch, by John Bayley. Abacus, 1999.
Remind Me Who I Am Again, by Linda Grant, Granta Books, 1998
SOURCES
By subject, in order of appearance.
Ralph Waldo Emerson
Baker, Carlos. Emerson Among the Eccentrics: A Group Portrait. New York: Penguin, 1996.
Bok, Edward. The Americanization of Edward Bok: An Autobiography. 1920. Reprint, New York: Pocket Books, 1965.
Cabot, James Elliot. Memoir of Ralph Waldo Emerson. 1887. Reprint, New York: AMS Press, 1965.
Emerson, Edward Waldo. Emerson in Concord: A Memoir. 1889. Reprint, Detroit: Gale Research Co., 1970.
Emerson, Lydia Jackson. The Selected Letters of Lydia Jackson Emerson 1802–1892. Edited by Delores Bird Carpenter. Columbia: University of Missouri Press, 1987.
Emerson, Ralph Waldo. The Letters of Ralph Waldo Emerson. Edited by Eleanor M. Tilton. Vol. 10, 1870–1881. New York: Columbia University Press, 1995.
——. “Notebook IT.” In The Topical Notebooks of Ralph Waldo Emerson, edited by Susan Sutton Smith. Columbia: University of Missouri Press, 1990.
——. Essays: First Series. 1841. Reprint, Philadelphia: David McKay, 1890.
——. Natural History of the Intellect. 1893. Reprint, New York: Solar Press, 1995.
——. The Journals and Miscellaneous Notebooks of Ralph Waldo Emerson. Edited by Joel Porte. Cambridge: Harvard University Press, 1982.
——. The Journals of Ralph Waldo Emerson, 1864–1876. Edited by Edward Waldo Emerson and Waldo Emerson Forbes. New York: Houghton Mifflin, 1909–1914.
Garnett, Richard. The Life of Ralph Waldo Emerson. 1888. Reprint, New York: Haskell House Publishers, 1974.
Gregg, Edith E. W., ed. The Letters of Ellen Tucker Emerson. Kent, Ohio: Kent State University Press, 1982.
McAleer, John. Ralph Waldo Emerson: Days of Encounter. Boston: Little, Brown, 1984.
Richardson, Robert. Emerson: The Mind on Fire. Berkeley: University of California Press, 1995.
Russell, Phillips. Emerson: The Wisest American. New York: Brentano’s, 1929.
Sealts, Merton M. Emerson on the Scholar. Columbia: University of Missouri Press, 1992.
Thayer, James Bradley. A Western Journey with Mr. Emerson. 1884. Reprint, Port Washington, N.Y.: Kennikat Press, 1971.
Alois Alzheimer and Emil Kraepelin
Berrios, G. E., and H. L. Freeman. Alzheimer and the Dementias. London: Royal Society of Medicine Services Limited, 1991.
Bick, Katherine, et al. The Early Story of Alzheimer’s Disease: Translation of the Historical Papers by Alois Alzheimer, Oskar Fischer, Francesco Bonfiglio, Emil Kraepelin, Gaetano Perusini. New York: Raven Press, 1987.
Brannon, William L. “Alois Alzheimer (1864–1915) I. Contributions to Neurology and Psychiatry. II. Dementia Before and After Alzheimer: A Brief History.” Journal of the South Carolina Medical Association 90, no. 9 (September 1994).
Decker, Hannah S. Freud in Germany. New York: International Universities Press, 1977.
Lewey, F. H. “Alois Alzheimer.” In The Founders of Neurology. Springfield, Ill.: Thomas, 1970.
Maurer, Konrad. A Biography of Alois Alzheimer. Translated by Neil Levi. New York: Columbia University Press, forthcoming.
——et al “Auguste D. and Alzheimer’s Disease.” Lancet 349 (24 May 1997).
Weber, Matthias M. “Alois Alzheimer, A Co-worker of Emil Kraepelin.” Journal of Psychiatric Research 31, no. 6 (1997).
Weindling, Paul. Health, Race and German Politics Between National Unification and Nazism 1870–1945. Cambridge: Cambridge University Press, 1989.
Ancient History of Senility
Aristophanes, The Clouds. Published as E-text by the Internet Classics Archive, at http://classics.mit.edu/Aristophanes/clouds.html
Berchtold, N. C., and C. W. Cotman. “Evolution in the Conceptualization of Dementia and Alzheimer’s Disease: Greco-Roman Period to the 1960s.” Neurobiology of Aging 19, no. 3 (1998).
Cicero, Selected Works. Translated by Michael Grant. New York: Penguin Books, 1960.
Cohen, Gene D. “Historical Views and Evolution of Concepts.” In Alzheimer’s Disease, edited by Barry Reisberg. New York: The Free Press, 1983.
Falkner, Thomas M. and Judith de Luce. Old Age in Greek and Latin Literature. Albany: State University of New York Press, 1989.
Finger, Stanley. Origins of Neuroscience. New York: Oxford University Press, 1994.
Juvenal. The Satires of Juvenal. Translated by C. E. Ramsay. Cambridge, Mass.: Loeb Classical Library/Harvard University Press, 1918.
The New Oxford Annotated Bible. New York: Oxford University Press,
Oxford English Dictionary. Compact Edition. Oxford: Clarendon Press, 1971.
Parkin, Tim. “Out of Sight, Out of Mind: Elderly Members of the Roman Family.” In The Roman Family in Italy, edited by Beryl Rawson and Paul Weaver. Oxford: Clarendon Press, 1997.
Plato. Theaetetus. Published as E-text by Project Gutenberg at www2.cddc.vt.edu/gutenberg/etext99/thtusl0.txt
Sahagún, Bernardino de. General History of the Things of New Spain: Florentine Codex. Translation. Santa Fe, N.M.: School of American Research and University of Utah, 1950–1982.
The Tale of Sinhue and Other Ancient Egyptian Poems, 1940–1640 B.C. Translated by R. B. Parkinson. Oxford: Oxford University Press, 1997.
Torack, Richard M. “The Early History of Senile Dementia.” In Alzheimer’s Disease, edited by Barry Reisberg. New York: The Free Press, 1983.
Virgil. “Eclogue IX.” In Virgil’s Works, translated by J. W. Mackail. New York: Modern Library, 1950.
Xenophon. Memorabilia. Stuttgart: Teubner. 1969.
Ronald Reagan
Altman, Lawrence K. “Reagan’s Twilight.” New York Times, 5 October 1997.
“Maureen Reagan Says She Has Beaten Cancer.” Associated Press. 4 May 1998.
Sidey, Hugh. “The Sunset of My Life.” Time, 14 November 1994.
Strober, Deborah Hart, and Gerald Strober. Reagan: The Man and His Presidency. New York: Houghton Mifflin, 1998.
Science of Mind and Memory
Alkon, Daniel L. Memory’s Voice: Deciphering the Mind-Brain Code. New York: HarperCollins, 1994.
Baddeley, Alan. Your Memory: A User’s Guide. New York: Macmillan, 1982.
Blakeslee, Dennis. “The Blood-Brain Barrier.” Background briefing posted on 5 May 1997 at www.ama-assn.org/special/hiv/newsline/briefing/bbb.htm
Blakeslee, Sandra. “Tests with Rats Offer Clues to Why Memories Change.” Cleveland Plain Dealer, 25 September 2000.
Bliss, Tim. “The Physiological Basis of Memory.” In From Brains to Consciousness: Essays on the New Sciences of Mind, edited by Steven Rose. Princeton: Princeton University Press, 1998.
Bolles, Edmund Blair. Remembering and Forgetting: Inquiries into the Nature of Memory. New York: Walker and Company, 1988.
Carter, Rita. Mapping the Mind. Berkeley: University of California Press, 1998.
Dennett, Daniel C. Consciousness Explained. Boston: Little, Brown and Company, 1991.
Goldberg, Stephen. Clinical Neuroanatomy Made Ridiculously Simple. Miami: MedMaster, Inc., 1979.
Greenfield, Susan. “How Might the Brain Generate Consciousness.” In From Brains to Consciousness: Essays on the New Sciences of Mind, op. cit.
Heindel, William C., and Stephen Salloway. “Memory Systems in the Human Brain.” Psychiatric Times, June 1999.
Johnson, Steven. Interview with Steven Pinker. Feed magazine, at www.feedmag.com/re/re181_master.html
Mega, Michael S., et al “The Limbic System: An Anatomic, Phylogenic, and Clinical Perspective.” Journal of Neuropsychiatry 9 (3): 315–330 (1997).
Meier, Barry. “Industry’s Next Growth Sector: Memory Lapses.” New York Times, 4 April 1999.
Mithen, Steven. The Prehistory of the Mind: The Cognitive Origins of Art and Science. London: Thames and Hudson Ltd., 1996.
Noback, Charles R., et al The Human Nervous System: Structure and Function. Philadelphia: Williams and Wilkins, 1996.
Parnavelas, John. “The Human Brain: 100 Billion Connected Cells.” In From Brains to Consciousness: Essays on the New Sciences of Mind, op. cit.
Pinker, Steven. How the Mind Works. New York: W.W. Norton, 1999.
Rhodes, Richard. Deadly Feasts: The “Prion” Controversy and the Public’s Health. New York: Touchstone, 1998.
Robbins, Trevor. “The Pharmacology of Thought and Emotion.” In From Brains to Consciousness: Essays on the New Sciences of Mind op. cit.
Rose, Steven. The Making of Memory: From Molecules to Mind. New York: Anchor, 1993.
Rose, Steven P. R. “How Brains Make Memories.” In Memory, edited by Patricia Fara and Karalyn Patterson. New York: Cambridge University Press, 1998.
Schacter, Daniel L. Searching for Memory. New York: Basic Books, 1996.
Scheck, Barry. “Attorney Barry Scheck.” The Connection (radio program), WBUR, Boston, 16 March 2000.
Sejnowski, Terrence J. “Memory and Neural Networks.” In Memory, op. cit.
Selkoe, Dennis J. “Alzheimer’s Disease: A Central Role for Amyloid.” Journal of Neuropathology and Experimental Neurology 53, no. 5 (September 1994).
Smith, A. David. “Ageing of the Brain: Is Mental Decline Inevitable?” In From Brains to Consciousness: Essays on the New Sciences of Mind, op. cit.
Squire, Larry R. “Memory and Brain Systems.” In From Brains to Consciousness: Essays on the New Sciences of Mind, op. cit.
Strong, Michael. “When Language Goes on Holiday: Finnegans Wake, Neuroscience, and Models of Subjectivity.” Dissertation, University of Pennsylvania, forthcoming.
Tanner, J. M. Fetus into Man: Physical Growth from Conception to Maturity. Cambridge, Mass.: Harvard University Press, 1990. Wilson, Barbara A. “When Memory Fails.” In Memory, op. cit.
S., The Man with the Perfect Memory
Luria, A. R. The Mind of a Mnemonist: A Little Book About a Vast Memory. Translated from the Russian by Lynn Solotaroff. Cambridge: Harvard University Press, 1968.
The History of Disease
Aronowitz, Robert A. Making Sense of Illness: Science, Society, and Disease. New York: Cambridge University Press, 1998.
Gross, Charles G. Brain Vision Memory: Tales in the History of Neuroscience. Cambridge, Mass.: MIT Press, 1998.
Porter, Roy. The Greatest Benefit to Mankind: A Medical History of Humanity. New York: W.W.Norton, 1997.