Still Alice
Acknowledgments
I’m deeply grateful to the many people I’ve come to know through the Dementia Advocacy and Support Network International and DementiaUSA, especially Peter Ashley, Alan Benson, Christine Bryden, Bill Carey, Lynne Culipher, Morris Friedell, Shirley Garnett, Candy Harrison, Chuck Jackson, Lynn Jackson, Sylvia Johnston, Jenny Knauss, Jaye Lander, Jeanne Lee, Mary Lockhart, Mary McKinlay, Tracey Mobley, Don Moyer, Carole Mulliken, Jean Opalka, Charley Schneider, James Smith, Jay Smith, Ben Stevens, Richard Taylor, Diane Thornton, and John Willis. Your intelligence, courage, humor, empathy, and willingness to share what was individually vulnerable, scary, hopeful, and informative have taught me so much. My portrayal of Alice is richer and more human because of your stories.
I’d especially like to thank James and Jay, who have given me so much beyond the boundaries of Alzheimer’s and this book. I am truly blessed to know you.
I’d also like to thank the following medical professionals, who generously shared their time, knowledge, and imaginations, helping me to gain a true and specific sense for how events might unfold as Alice’s dementia is discovered and progresses:
Dr. Rudy Tanzi and Dr. Dennis Selkoe for an in-depth understanding of the molecular biology of this disease
Dr. Alireza Atri for allowing me to shadow him for two days in the Memory Disorders Unit at Massachusetts General Hospital, for showing me your brilliance and compassion
Dr. Doug Cole and Dr. Martin Samuels for additional understanding of the diagnosis and treatment of Alzheimer’s
Sara Smith for allowing me to sit in on neuropsychological testing
Barbara Hawley Maxam for explaining the role of the social worker and Mass General’s Caregivers’ Support Group
Erin Linnenbringer for being Alice’s genetic counselor Dr. Joe Maloney and Dr. Jessica Wieselquist for role-playing as Alice’s general practice physician
Thank you to Dr. Steven Pinker for giving me a look inside life as a Harvard psychology professor and to Dr. Ned Sahin and Dr. Elizabeth Chua for similar views from the student’s seat.
Thank you to Dr. Steve Hyman, Dr. John Kelsey, and Dr. Todd Kahan for answering questions about Harvard and life as a professor.
Thank you to Doug Coupe for sharing some specifics about acting and Los Angeles.
Thank you to Martha Brown, Anne Carey, Laurel Daly, Kim Howland, Mary MacGregor, and Chris O’Connor for reading each chapter, for your comments, encouragement, and wild enthusiasm.
Thank you to Diane Bartoli, Lyralen Kaye, Rose O’Donnell, and Richard Pepp for editorial feedback.
Thank you to Jocelyn Kelley at Kelley & Hall for being a phenomenal publicist.
An enormous thank-you to Beverly Beckham, who wrote the best review any self-published author could dream of. And you pointed the way to Julia Fox Garrison.
Julia, I cannot thank you enough. Your generosity has changed my life.
Thank you to Vicky Bijur for representing me and for insisting that I change the ending. You’re brilliant.
Thank you to Louise Burke, John Hardy, Kathy Sagan, and Anthony Ziccardi for believing in this story.
I need to thank the very large and loud Genova family for shamelessly telling everyone you know to buy your daughter’s/niece’s/cousin’s/sister’s book. You’re the best guerrilla marketers in the world!
I also need to thank the not as large but arguably just as loud Seufert family for spreading the word.
Last, I’d like to thank Christopher Seufert for technical and web support, for the original cover design, for helping me make the abstract tangible, and so much more, but mostly, for giving me butterflies.
CONTENTS
Acknowledgments
SEPTEMBER 2003
OCTOBER 2003
NOVEMBER 2003
DECEMBER 2003
JANUARY 2004
FEBRUARY 2004
MARCH 2004
APRIL 2004
MAY 2004
JUNE 2004
JULY 2004
AUGUST 2004
SEPTEMBER 2004
OCTOBER 2004
NOVEMBER 2004
DECEMBER 2004
JANUARY 2005
FEBRUARY 2005
MARCH 2005
APRIL 2005
MAY 2005
JUNE 2005
SUMMER 2005
SEPTEMBER 2005
EPILOGUE
POSTSCRIPT
Readers Club Guide for Still Alice
Even then, more than a year earlier, there were neurons in her head, not far from her ears, that were being strangled to death, too quietly for her to hear them. Some would argue that things were going so insidiously wrong that the neurons themselves initiated events that would lead to their own destruction. Whether it was molecular murder or cellular suicide, they were unable to warn her of what was happening before they died.
SEPTEMBER 2003
Alice sat at her desk in their bedroom distracted by the sounds of John racing through each of the rooms on the first floor. She needed to finish her peer review of a paper submitted to the Journal of Cognitive Psychology before her flight, and she’d just read the same sentence three times without comprehending it. It was 7:30 according to their alarm clock, which she guessed was about ten minutes fast. She knew from the approximate time and the escalating volume of his racing that he was trying to leave, but he’d forgotten