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