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Still Alice
Still Alice
Still Alice
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Still Alice

Rating: 4.5 out of 5 stars

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In Lisa Genova’s extraordinary New York Times bestselling novel, an accomplished woman slowly loses her thoughts and memories to Alzheimer’s disease—only to discover that each day brings a new way of living and loving. Now a major motion picture starring Julianne Moore, Alec Baldwin, Kate Bosworth, and Kristen Stewart!

Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer’s disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring, and terrifying, Still Alice captures in remarkable detail what it’s like to literally lose your mind...

Reminiscent of A Beautiful Mind, Ordinary People, and The Curious Incident of the Dog in the Night-time, Still Alice packs a powerful emotional punch and marks the arrival of a strong new voice in fiction.

Editor's Note

An emotional debut…

Grab a tissue. This fierce, emotional debut from Genova — who holds a doctorate in neuroscience from Harvard — captures graceful bravery in the face of a devastating disease.

LanguageEnglish
PublisherPocket Books
Release dateJan 6, 2009
ISBN9781439157039
Author

Lisa Genova

Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa Genova is the New York Times bestselling author of Still Alice, Left Neglected, Love Anthony, Inside the O’Briens, and Remember. Still Alice was adapted into an Oscar-winning film starring Julianne Moore, Alec Baldwin, and Kristen Stewart. Lisa graduated valedictorian from Bates College with a degree in biopsychology and holds a PhD in neuroscience from Harvard University. She travels worldwide speaking about the neurological diseases she writes about and has appeared on The Dr. Oz Show, Today, PBS NewsHour, CNN, and NPR. Her TED talk, What You Can Do To Prevent Alzheimer's, has been viewed over 2 million times.  

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Reviews for Still Alice

Rating: 4.286204100609756 out of 5 stars
4.5/5

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  • Rating: 4 out of 5 stars
    4/5
    This is a heart-wrenching, poignant story of one woman's struggle with the early onset of Alzheimer's disease. Told in the third person, the story focuses on Alice's point of view as she tries to come to terms with the diagnosis and her rapid loss of cognitive skills. It is impossible not to feel deep, sincere sympathy for Alice. She is such a wonderful character - courageous, intelligent, warm-hearted and, at all times, dignified. The speech she gives at the Dementia Care Conference had me in tears. Beautifully written, Alice's journey is a hard one to follow as she grapples with feelings of confusion, fear, anger, hopelessness and frustration, but I'm so very glad I travelled with her even though in the end, it was hard to let her go.
  • Rating: 4 out of 5 stars
    4/5
    Told from Alice's point of view, we learn about her symptoms leading up to a diagnosis of early-onset Alzheimer's disease. This is a tragic diagnosis for anyone, and for a linguistics professor at Harvard, not being able to find the right words, or eventually even to read, is brutal. We see what happens to Alice over two years, and learn what a devastating disease this is.
  • Rating: 4 out of 5 stars
    4/5
    The main character has early onset Alzheimer's. I don't know much about the disease, but I found this book to be very interesting. If it's accurate, it gives good insight to what a person goes through as well as the family.

    A movie about Alz, Away from Her, was amazing. It seemed to be a much better view of the disease. I found it leaving a more lasting impression of alzheimer's --the actor's performances were moving.
  • Rating: 5 out of 5 stars
    5/5
    I found this story profoundly sad, disturbing and thought-provoking when I read it soon after it was first published. When I was faced with reading it for a second time (as a reading group choice) I wondered whether it would have less of an emotional impact. However, I felt as inexorably drawn into the author’s descriptions of how the diagnosis of early-onset Alzheimer’s disease affected not only Alice, but also her husband, John, and their three adult children. The effects on their lives were profound and disturbing for each of them. I thought that she charted, in a very sensitive and moving way, the gradual disintegration of Alice’s ability to do anything for herself, as well as her continuing demand to be seen for who she had been, not just who she was becoming. She realistically and evocatively captured the ways in which each member of the family developed different, and changing, coping strategies as they struggled to deal both with new realities, and an uncertain future. Everyone hoped for a miracle cure but, as there wasn’t one, they could only watch as the disease unrelentingly destroyed every aspect of Alice’s life, from her memories, to her ability to do anything for herself. There were moments when her descriptions of Alice’s continuing awareness of what was happening to her were so evocative that they felt almost too painful to read: I could almost viscerally feel her frustrations and her fear.There were times when I felt angry with John’s apparent detachment, his constant search for alternative diagnoses or treatments and, finally, with a decision he makes when Alice’s hold on reality has deteriorated considerably. However, the author did such a good job of portraying his point of view, and his need to look forward, that I ended up feeling some empathy with him!Any form of dementia is something no individual or family wants to think about, but when it strikes someone in their fifties the shock must be greater, particularly as this form of the disease has such a strong genetic component, with a fifty percent chance that any children may go on to develop it. I thought that the author dealt well, and very credibly, with the dilemma of whether or not people would choose to take advantage of genetic testing. It seems to me that, whatever the decision, it must be very difficult to either live the rest of your life knowing that you have inherited that gene, or to go through life wondering. Not all forgetful moments are a precursor to dementia, but if there is that history in your family, I can only begin to imagine how stressful such moments must be. This is not an easy story to read but I think that Lisa Genova’s well-informed, compassionate writing has created characters who are unforgettable (if that isn’t too ironic) and through them has conveyed a powerful message that we should continue to “see” the essence of who sufferers are, rather than, through ignorance and fear, ignore them. I’m sure we all ask the question “what if ….? and I think this book goes some way to addressing some of the answers.
  • Rating: 4 out of 5 stars
    4/5
    When I read this book it really stayed with me and now to see it's going to be a movie with Julianne Moore, I can't wait to see it. She will be wonderful in it. It is a very hard story to read and will break your heart.
  • Rating: 5 out of 5 stars
    5/5
    “I miss myself.”Dr. Alice Howland is a 50-year-old psychology professor at Harvard with a specialty in linguistics. Her decline started with forgetting words, getting lost while jogging on a regular route, forgetting appointments, and even a trip. After her diagnosis, her relationship with herself, her husband, and her three children evolved. She finds tools to compensate her declining memory. Her husband who had loved her for her mind struggles to know the new her and to learn and fight this disease that is stealing her away. Her children, who may inherit the mutation gene, must decide what to do for themselves as well as how to be a bigger part of Alice’s life especially while she still knows them. ‘Still Alice’ delivers quite a punch. The idea of having early on-set Alzheimer is incredibly scary. Being an EON patient, the progression of the disease is faster than a typical elderly. Furthermore, because the main character is highly intelligent and a high-functioning individual, it’s possible her Alzheimer’s started sooner but she’s been able to compensate, making the progression appear to be even more extraordinary. The depictions of her decline, the gaps, the repeats, the mistakes, the moments of lucidity, are absolutely heart-breaking. The brilliance of Genova’s writing is its sparseness. She doesn’t outright point out Alice’s mistakes. She lets the readers come to the realization that an “episode” had occurred. In the last months, when her family members are described instead of using their names, the words read like a gut-wrenching blow when I realized she longer knows who they are. Damn…Quote:On the loss of language:“But to tell the truth, she was very far from okay. She could still read and comprehend small amounts of text, but the computer keyboard had become an undecipherable jumble of letters. In truth, she’d lost the ability to compose words out of the alphabet letters on the keys. Her ability to use language, that thing that most separates humans from animals, was leaving her, and she was feeling less and less human as it departed. She’d said a tearful good-bye to okay some time ago.”
  • Rating: 3 out of 5 stars
    3/5
    Although this book brought out my hypochondria (yes, I forget words/names/appointments....) I found the writing a bit tiresome and the narrative really predictable.
  • Rating: 3 out of 5 stars
    3/5
    I liked this book more than I thought I would. The beginning was a bit too plain, unrealistic (Articles published only in Nature and Science?), however, the more Alice's illness progressed the more human the story became. You could tell the author did her research, both in terms of science and human emotions.
  • Rating: 5 out of 5 stars
    5/5
    An incredible book detailing the struggles of the main character as she declines with Alzheimer's Disease. Thought provoking and very in depth, I found this book to be a profound look at such a terrible disease. It shows how so many people around the patient are affected and how the person truly feels as they slip away. Heartwrenching and beautifully written.
  • Rating: 4 out of 5 stars
    4/5
    I probably would have given it four stars, except for a few minor things that rang as untrue to me. Overall, I really enjoyed it and especially enjoyed that the voice was that of the character with Alzheimer's.
  • Rating: 5 out of 5 stars
    5/5
    As highly recommended as this book is and as much as I wanted to read it, it took me a good while to muster the courage to actually do it. I was intimidated by the subject because I lived for a year with a family where the elderly grandmother had Alzheimer's, and even though there was much I didn't understand I witnessed first-hand how traumatic her condition was for the entire family. Finally I decided to just go for it, and when the novel was over I sat there for a while, heartbroken, not knowing where to begin thinking back on it like I usually do after finishing a book. There was so much there. There was Alice's love for her family, her bitter-sweet feelings for her husband, her fear of losing herself, of losing all the time she thought she had. There was her husband's pain and the decisions he had to make, her children's fear and strength, the relationships between them all, and the impact of Alice's diagnosis. All this tore at me and demanded attention, all the questions that stemmed from the story being told by a person with Alzheimer's begged to be answered, and I couldn't begin anything else for several days because I was still living in Alice's world, trying to come to terms with a question that resonated with me because reading, books and words are an enormously important part of my life, just like they were for Alice - how does one cope with the knowledge that meaningful reading is no longer possible? How does the author do this in a volume of less than 300 pages? It's simple, really. Lisa Genova has a gift. She does it with writing like this:"She sat in the passenger seat and waited for John to say something. But he didn't. He cried the whole way home."What else does the reader need to understand the depth of feelings, the gravity of the situation? Nothing at all, it's all there in three short sentences. Another aspect that made the book work is the authenticity of everyday feelings and surroundings. I don't know this for a fact but I think that Ms. Genova is a runner, and I think she has a house somewhere at the beach in New England. I think that she has a passion for the world of academia and a complicated parent-child relationship in her life in one way or another. I think she drew on all those parts of her own life and experiences in crafting Alice's story and through her own familiarity she made the story even more personal than it already is. I cried while I read this novel. I cried for Alice, for her husband and for their children. I cried for the losses of memories, dignity, conversations and truly meaningful time together. I also laughed through tears because of Alice's irrepressible spirit, intellect and sense of humor that shone through till the very end. This book may not affect you as it did me, there is a lot to be said about timing after all. I thought it was excellent, heartbreaking but truly excellent, and I highly recommend it. P.S. I have not been able to use the word "thingie" without immediately looking for a more articulate alternative for weeks now. Thought you should know.
  • Rating: 4 out of 5 stars
    4/5
    Moving but sad story - written in beautiful prose, story of 50 something Alice Howland, esteemed Harvard professor of linguistics, wife of scientist husband John, mother of three grown children, soon to be grandma... is diagnosised with early onset Alzheimer's disease. "Of all the people who have Alzheimer's disease, about 5 percent develop symptoms before age 65." Alice knows this but, at first-like anyone in her age bracket and superior intelligence, ambition, etc, she guesses it merely may be the side effects of menopause, overwork or stress. Compelling because we experience the entire story through Alice's point of view, not in third person narrative - a challenge to do this well as Alice moves from full cognition, to hiccups of memory lapses to obvious, growing Alzheimer's "fog." Has a readers guide for book groups at end, and interesting interview with author.
  • Rating: 5 out of 5 stars
    5/5
    This was an amazing book!!! I had looked at it so many times in the bookshop and thought about the concept of writing about someone with Alzheimer's, especially early onset, and make it from their point of view, to be really interesting. I cannot begin to describe how well this book has been written, and is one of the best books that I have read. I have also now found out that she has written a second book, and am counting down til I can read it as well!
  • Rating: 3 out of 5 stars
    3/5
    Professor's documentation of her decent into Alzheimer's disease - Ann
  • Rating: 4 out of 5 stars
    4/5
    Genova's debut novel gives readers a stark and somewhat frightening view of an illness that has affected so many families. Until I read "Still Alice," I knew nothing about early-onset Alzheimers. The book will make many of us think twice every time we misplace our car keys or forget the name of that second cousin's daughter. Toward the end, I lost interest in the story. I'm not sure why.
  • Rating: 4 out of 5 stars
    4/5
    Narrated by the author. Powerful and informative. I didn't know much about the trajectory of Alzheimer's disease but after listening to this novel, I have a greater understanding and empathy for those with the disease and the loved ones it affects. It's sad to witness Alice's spiral but there is a sense of hope in her story, too. Genova wasn't the best person to record her own book however. Alice's story needs a mature voice and Genova sounds much more suited to narrating a young adult novel. Her delivery is also emotionally flat, at odds with the varied and strong emotions expressed. But it's a testament to the richness of the story that I kept listening, compelled to accompany Alice on her lonely journey.
  • Rating: 5 out of 5 stars
    5/5
    What happened to me is quite ironic given the subject of this novel, which is written from the point of view of a 50-something Harvard professor who is slowly developing early-onset Alzheimers. I was sure I had read it, entered it here, couldn't remember a thing about it, read ALL the reviews and descriptions both here and on Amazon; still couldn't remember a thing about it; and finally went to my pile of library books and there it was, unread.This book was just amazing. Wonderful, poignant writing - you felt like you were inside her head experiencing the tragic, profound decline. All her little strategies to remain in control of her life, including her set of test questions were just heartbreaking. I have two friends with early-onset Alzheimers, and Genova got it exactly right. My only tiny tiny little quibble, which I wrote about on the Still Alice site, is about the scene where Alice and her daughter watch the sun setting over the Atlantic on Cape Cod. I've been on the Cape a lot, and maybe there's a twisted around place where this could happen, but I can't figure out how.
  • Rating: 5 out of 5 stars
    5/5
    Dr. Genova's STILL ALICE is extraordinary. It reads like non-fiction. Very moving informative and -for those of us of a certain age- frightening. Highly recommended.
  • Rating: 4 out of 5 stars
    4/5
    Touching story. I finished it in a day!
  • Rating: 5 out of 5 stars
    5/5
    I hard book - after watching my mother struggle and lose to this slow death, this book was so familiar and so revealing. I saw my mother in Alice - a strong, independent, intelligent woman who loses herself. A must read for anyone dealing with this horrible disease.
  • Rating: 5 out of 5 stars
    5/5
    This book scares me for my future...I often forget things and need to make lists. My grandmother had Alzheimer's and I fear that I will also get this. It think this is a great book for anyone who has a family memeber dealing with this issue right now.
  • Rating: 5 out of 5 stars
    5/5
    This is a wonderful account of Alzheimer's Disease through the patient's eyes. My family and I watched as both of my grandmothers suffered silently from this horrible disease. Still Alice gives the reader insight into the thoughts and mind of the victim and shows that, yes, there is still a person inside. Lisa Genova has crafted a beautiful novel that will touch your heart. Even after watching two of the strongest women I will ever know succumb to the same fate as Alice, I am comforted to know that the demon that is Alzheimer's can never take away their beautiful spirit that burns on the inside.
  • Rating: 3 out of 5 stars
    3/5
    As a lot of us are approaching or are in the baby boomer era, Alzheimer’s is a real subject which we cannot run or hide from. We worry for our parents as well as ourselves. Genova does a great job in tackling real subjects and dives into telling the real facts. It is hard to comprehend what actually goes on in the lives of patients with Alzheimer’s disease, especially when they have been so independent and intelligent most of their lives.

    You can feel the frustration and forgetfulness and being shut out in the book. I agree with some of the other reviews, it was taking on a bit of a medical journal feel instead of fiction; however, assume some of this was needed in order to tell the story realistically. John definitely avoided the disease; however, I have a sister who cares for an Alzheimer’s patients so get all the low down (which they can be funny) sometimes, and really hard with personal hygiene, and especially the struggles with their spouses and family.
  • Rating: 3 out of 5 stars
    3/5
    The topic is certainly timely. Mental disease and illness is so prominent yet considered so negatively in society. The book touches on the difficulty of identifying workplace incompetence and personal destruction through substance abuse vs the development of incapacitating illness. This book dealt with early onset and a rapidly progressing disease. Alice had the funds and support system to function to her maximum. I would like to have seen the book offer some deeper perspective on those families without the funds and training to deal with long term care. I would recommend anyone interested in the topic to read the book.
  • Rating: 5 out of 5 stars
    5/5
    WOW what a novel! Two major things that exeplify the affect this book had on me... 1) It normally takes me about a week to read a book, especially at school. I read this in three days! 2) I normally do not cry in books; I'm just not emotional in that way. This book definitely had me tearing up, though. It was mesmerizing and heart-wrenching, fascinating and sobering.We all know how terrible Alzheimer's disease is. We have probably all known someone affected by it; I know I have. It's scary and very sad to think about. Author Lisa Genova tells the story from a different perspective - from the viewpoint of the patient, the one experiencing the progressive cognitive decline. The way she conveyed the progression of the disease broke my heart little by little. Seeing the way Alice's family suffered and learned to cope was painful as well. Something about the book made me keep reading despite the difficult subject matter. I wanted to see Alice's life play out. I was cheering for her from the sideline hoping for a breakthrough, grasping onto each moment of lucidity.My advice to you: read this book. It is the kind of novel that will stay with you and alter how you see life and the world around you.
  • Rating: 5 out of 5 stars
    5/5
    This was one of my favorite books that I've read in a while. I was astonished to learn that the first-time novelist self-published it originally, and disagree with critics who think her writing is amateurish or "too technical." I found the story completely absorbing and empathized with Alice a great deal.

    Even though the story is written in the third person, the author skillfully takes us inside the mind of a fictional Alzheimer's patient, from the early slips of memory to full-blown dementia. The portrayal of Alice's family's reaction to her illness is realistic and heartbreaking.

    I recommend this book to everyone.
  • Rating: 5 out of 5 stars
    5/5
    Story OverviewAlice Howland is 50-years-old and has achieved great personal and professional success. She is a tenured professor at Harvard in the field of cognitive psychology and a world-renowned expert in linguistics. Her husband John is also a respected Harvard professor and researcher in biology. She has three grown children, Lydia, Anna and Tom. Although she's had some tragedy in her life (her alcoholic father killed her mother and sister in a drunken car crash that only he survived), Alice has a satisfying and full life. Although her marriage has operated on cruise control for several years as she and John have pursued their separate careers and she and her daughter Lydia disagree about Lydia's decision to pursue an acting career instead of college, Alice has a satisfying life—filled with travel, teaching and family events.But lately, Alice seems to be forgetting things more often—losing her train of thought in the middle of a lecture she's given hundreds of times, leaving her BlackBerry in a restaurant, mixing up times for appointments. But one day while out running, Alice finds herself completely disoriented and lost—in the town where she's lived for more than 25 years and on a route she's run countless times. Flushed and panicked, Alice wanders around her home town until her world suddenly rights itself and she knows where she is. But the experience shakes her to the core, and more lapses cause her to visit her long-time family doctor. Is it menopause? Stress? Depression?After several tests, her physician sends her to a neurologist, who conducts more extensive tests and gives Alice shocking news: she has early-onset Alzheimer's disease. Initially reluctant to share the diagnosis with her husband, Alice finally shares her secret with him. Like Alice, he is unwilling to believe it and pushes for more tests. But the worst proves to be true, and they face a future that seems bleak and hopeless—a future where Alice will slowly disappear until the faces of those she loves are the faces of strangers and her ability to communicate (the linchpin of her professional life) disappears as her brain is ravaged by the disease.My ThoughtsThis book is heart-breaking. I struggled to read the last 65 pages or so because I was crying so hard I could barely see the words. I've always known Alzheimer's is a cruel disease, but reading Alice's story—and "experiencing" Alzheimer's from the patient's point of view—brings to life the horror and the tragedy of the disease in a way that makes it all too real. Lisa Genova has done something special with this book; she has given a voice to people who are slowly and irrevocably losing their voice. She's managed to bring her readers inside the mind of an Alzheimer's patient and take them on the journey from momentary lapses in memory to a world where the man you've been married to for years becomes "the man who owns the house" and your daughters become "the mother" and "the actress."In many ways, the book reminded me of Flowers for Algernon by Daniel Keyes. In that book, a young man named Charlie with an IQ of 68 undergoes a special experimental procedure to increase intelligence, which seems to have worked successfully on a mouse named Algernon. The experiment works, and Charlie's IQ increases dramatically. However, the improvement is only temporary and he reverts back to his initial mental capacity. In the story, which is written as letters and notes in Charlie's journal, you can track Charlie's progress by the way he writes. Initially his writing is very simple and full of spelling errors. Then as his intelligence increases, the writing gets more sophisticated and the spelling errors disappear. Then, as he declines, the writing reverts back to how it was in the beginning. That book also made me cry; you mourn the loss of Charlie as you see him beginning to crumble mentally after achieving a "normal" life.In Still Alice, you experience the progression of Alzheimer's as Alice does—repetitive conversations, leaving a room after talking to a long-time acquaintance and coming back moments later and introducing yourself to them as if you've never met before, losing vocabulary. As Alice deteriorates, you experience her losses and gaps in memory as if it is happening to you, and this makes for heart-breaking reading. At the end of the book, when she wonders why she can't go to her home and wonders why she is with the "man who owns the house," my heart was full of sadness. One device Lisa Genova uses to chart the disease's progression is a series of questions that Alice devises to "test" herself before her dementia gets too bad. The idea is that if she can no longer answer the questions, she should open a specific file on her computer and follow the directions there for committing suicide. As the book progresses, the answers get shorter and more inaccurate—charting her deterioration. It was a brilliant device, and I was sobbing when Alice finds her letter to herself and struggles to carry out its instructions.As tragic as this story is and as horrible as the disease is, Genova is also able to present some beautiful moments as well. As the disease progresses, Alice lets go of many of the things that kept her separated from her family—healing her relationship with her estranged daughter and allowing her to realize what is truly important to her. Although I wouldn't wish Alzheimer's disease on anyone, I thought Genova offered some slight reassurances that the disease itself may possibly protect the people suffering from it at the end—giving them a simplified and almost childlike existence. The ending scene between Alice and Lydia offered a kind of bittersweet ending—reminding the reader that love can still be alive despite the ravages of the disease.My version of the book included an interview with Lisa Genova about her research and motivations for the book. The book itself was given the "stamp of approval" by the National Alzheimer's Association, and Ms. Genova writes for the organization in a professional capacity. In addition, she holds a Ph.D. in neuroscience from Harvard University. I think this is worth mentioning because this isn't a writer who imagines what Alzheimer's might be like. She studied and researched it and worked hard to accurately capture the diagnosis process, symptoms, treatment options and progression accurately. I, for one, applaud her hard work and decision to write this book.My RecommendationI think this book is a must read for anyone affected by Alzheimer's disease. I pray that this disease never touches me or anyone I know. I cannot imagine anyone being unaffected by this book. It will rip your heart out, and I suggest you do not read it without having many tissues nearby. I haven't been this emotionally affected by a book in a long time, and, for this reason, I must give it 5 stars.
  • Rating: 5 out of 5 stars
    5/5
    I loved this book. Read it in a day.
  • Rating: 5 out of 5 stars
    5/5
    This book was told from the patients perspective. Throughout the story you feel and experience the frustration and the heartache of losing the word of an item that you are holding in yourhand or the face of one of your children. The author did plenty of research and while this book is fiction it seems to be what some Alzheimer's patients experience. They KNOW when they have forgotten, they KNOW when they can't find there way down their own hallway. The minnd just won't let retreive the much desired information.

    I am definitely going to look at Alzheimer's sufferer's in a different way, now.
  • Rating: 5 out of 5 stars
    5/5
    For me, this was an absolutely gripping book. Choosing a Harvard professor whose specialty was linguistics as the victim of early-onset Alzheimer's disease made the story tragically ironic. My father had mild Alzheimer's when he died, but he was 95 years old. From the perspective of looking back on 50, it's hard to imagine how frightening it would be to see yourself losing function at such an early age. It seemed to me that the progression was awfully fast. Even with early-onset, I would think such a fast deterioration would not be the norm. I can well understand what Alzheimer's organizations would support the book. It gives a great deal of insight. Highly recommended.

Book preview

Still Alice - Lisa Genova

"Picking up anything written by LISA GENOVA is quickly becoming a no-brainer."

USA Today

STILL ALICE

Reads like a gripping memoir of a woman in her prime watching the life she once knew fade away.

USA Today

Vivid, well-informed, and deeply sympathetic.

San Francisco Chronicle

I couldn’t put it down.’

The Boston Globe

Full of heartbreaking believability.

The Globe and Mail

A masterpiece that will touch lives in ways none of us can even imagine. This book is the best portrayal of the Alzheimer’s journey that I have read.

—Mark Warner, Alzheimer’s Daily News

LEFT NEGLECTED

"Remember how you couldn’t put down Still Alice? Well, clear your schedule—because you’re going to feel the same way."

—Jodi Picoult, #1 New York Times bestselling author of Sing You Home

Genova is the master of getting into the heads of her characters, relating from the inside out what it’s like to suffer from a debilitating disease . . . brilliantly.

USA Today

Engaging, sympathetic.

—San Francisco Chronicle

Equal parts Jennifer Weiner and Merck Manual, Bridget Jones meets Oliver Sacks.

Montreal Gazette

LOVE ANTHONY

Lisa Genova’s novels ring true. . . . Try not to weep.

USA Today

Compassionately yet honestly depicts the reality of being the parent of an autistic child. . . . Riveting, brilliantly written.

Shelf Awareness

Readers will find comfort in the beauty of Genova’s prose and ability to create profound emotional moments.

Winnipeg Free Press

INSIDE THE O’BRIENS

This is Genova’s genius. A bold, skillful writer at the height of her narrative powers, she makes us long to hope for the hopeless and comfort the condemned.

—Jacquelyn Mitchard, author of The Deep End of the Ocean

Brimming with candor, pathos, and deeply human characters.

—Vanessa Diffenbaugh, author of The Language of Flowers

[Genova’s] very human novel teaches us to keep living, to lean on each other, and be there to be leaned on.

—Matthew Thomas, author of We Are Not Ourselves

Genova . . . compassionately details how an illness—this time Huntington’s disease—can destroy not only the afflicted, but those who love them as well.

People, a People pick

"Inside the O’Briens . . . promises to do for Huntington’s disease what Still Alice did for Alzheimer’s."

The Huffington Post

EVERY NOTE PLAYED

Only Lisa Genova could bring such honesty and grace to the war against ALS. Searing writing and a must-read.

—Helen Simonson, New York Times bestselling author of Major Pettigrew’s Last Stand

Sometimes it’s easier to tell truth in fiction. . . . And she tells it with heart and hope.

–NPR

"Genova is far more serious and readable, concerned as much with depicting the clinical realities of ALS as in wringing it for emotional catharsis. You might drop a few tears reading Every Note Played but you won’t feel bullied into doing so."

The Wall Street Journal

Genova captivates. Gut-wrenching but suspenseful reading. . . . Both substantively informative about ALS and an emotionally wrenching psychological portrait.

Publishers Weekly

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title

Dearest Reader,

When I was twenty-eight years old, my grandmother was diagnosed with Alzheimer’s. As the neuroscientist in my family, I did everything I could to understand this beast of a disease. I learned the anatomy, the clinical presentation, and the molecular neurobiology. I read about disease management and caregiving. I learned a lot, but even armed with all of this education, I still didn’t know how to simply be with my grandmother. I could relate to her as a neuroscientist. I had no idea how to relate to her as her granddaughter. I felt sad, upset, scared, embarrassed, frustrated, uncomfortable, powerless, and disconnected. I felt bad for her and bad for us, her family.

But I didn’t know how to feel WITH her. This is the distinction between sympathy and empathy. Sympathy is feeling for someone and keeps us emotionally detached, our experiences separate. Empathy is feeling with someone. It’s the imaginative leap we make when we take on the perspective of another person, when I imagine what it feels like to be you.

I soon realized that everything I’d read about Alzheimer’s was written from the perspective of an outsider looking in—scientists, physicians, caregivers, social workers. My education lacked the point of view of the person with Alzheimer’s and an answer to this question: What does it feel like to have Alzheimer’s?

I remember my AHA moment, the idea that fiction would be the place to find the answer. Stories give us the chance to feel what someone else is feeling, to walk in someone else’s shoes, to see ourselves in the other.

Still Alice was my quest for empathy, for understanding what it feels like to have Alzheimer’s. In doing the research for this book, in addition to shadowing neurologists, interviewing general practice doctors and genetic counselors and scientists, I came to know the real experts in this disease—twenty-seven people living with younger onset and/or early stage Alzheimer’s, people who felt stigmatized and alienated, people who bravely and generously shared with me what it feels like to live with this disease.

In listening to them, I soon realized that this book was bigger than a personal quest. Much like the social reaction to cancer fifty years ago, the general public was too afraid of this monster of a disease to openly look at it or talk about it. And I thought, maybe this story I’m writing can give a human face and voice to this disease. Maybe it can give readers access to what might otherwise be too scary and overwhelming to consider. Maybe it can reveal the humanity behind this illness. In answering my question What does it feel like to have Alzheimer’s? through story, I might change the world’s perception of this disease.

My query letter seeking representation for Still Alice was rejected or ignored by 100 literary agents. The few who asked to read the manuscript ultimately felt that Alzheimer’s was too scary, heavy, and dark, and that readers would shy away from the subject. It was too big of a risk, and they passed on it. I pressed on and self-published Still Alice, selling copies from the trunk of my car for almost a year. Word of mouth eventually led me to an agent and Simon & Schuster.

Still Alice went on to spend 59 weeks on the New York Times bestseller list and has been translated into 37 languages. In considering the possibility of Still Alice being adapted for the screen, my film agent told me, You have a drama starring a fifty-year-old woman who has Alzheimer’s with no triumphant ending. Hollywood is never going to make that movie. Perseverance paid off again, and Julianne Moore won an Oscar for Best Actress in the film. Still Alice has also been adapted for the stage and just finished a tour of the UK.

So I want to thank you—the reader, the moviegoer, and the theater patron—for having the courage to read this book, to watch the film, and see the play. I hope this story has given you the chance to understand what it feels like to have Alzheimer’s, to walk in Alice’s shoes, to experience empathy. I hope this knowledge helps you stay connected to your loved ones with Alzheimer’s and be a better caregiver. And I hope it has given you the understanding, the language, and the familiarity to talk about this previously unspeakable subject.

Why is talking about Alzheimer’s important? Conversation fuels social change. Talking about Alzheimer’s is crucial for bringing your excluded, alienated neighbors with Alzheimer’s and their families back into community, for eradicating the stigma and shame people with Alzheimer’s have endured for too long, for creating the advocacy and urgency needed to fund the research that will lead to treatments and survivors.

Maria Shriver once said that she hopes Still Alice will do for Alzheimer’s what Philadelphia did for HIV and AIDS. I think we’re partway there, Maria. Someday, hopefully and optimistically soon, we’ll have a preventative medicine and a cure. And I’d like to think that this story—and everyone who has read or seen and talked about it—will have played a role in getting us there.

My grandmother died in 2002, two years before I began writing Still Alice. I wish I knew then what I understand now. I pass this baton to you.

With love,

Lisa Genova

January 5, 2019

Still Alice:

THE FIRST DECADE

JULY 2007

Still Alice was self-published through iUniverse. Copies could be purchased at amazon, bn.com, a handful of independent bookstores, and out of the trunk of my car.

MARCH 2008

I spoke about Still Alice, Alzheimer’s, and empathy at the first early stage summit at the Alzheimer’s Association Advocacy Forum in Washington, DC.

MAY 2008

Simon & Schuster acquired Still Alice. I stopped selling copies from the trunk of my car.

JULY 2008

The drug Flurizan failed to significantly improve cognition in patients with mild Alzheimer’s disease in its Phase 3 clinical trial. It was hoped that Flurizan would reduce levels of amyloid-β and thereby slow or stop disease progression. The fictional clinical trial drug Amylix in Still Alice was modeled after Flurizan.

2008

The Dominantly Inherited Alzheimer Network (DIAN) Observational Study was launched by Washington University School of Medicine in St. Louis. This study was designed to discover and track changes that occur in the brains of people with dominantly inherited Alzheimer’s disease, a rare form of Alzheimer’s caused by gene mutations in presenilin 1, presenilin 2, or amyloid precursor protein. This form of early-onset Alzheimer’s affects less than 1% of people with the disease and typically causes dementia symptoms to begin when people are young, in their 30s, 40s, and 50s. I gave Alice Howland in Still Alice the presenilin 1 mutation. The aim of DIAN is to find biomarkers that will lead to earlier diagnostics, treatments, and prevention for all forms of Alzheimer’s.

JANUARY 2009

The Simon & Schuster trade paperback original edition of Still Alice was published. It debuted at #5 on the New York Times list.

SEPTEMBER 2009

I spoke about Alzheimer’s and empathy in Copenhagen on World Alzheimer’s Day.

OCTOBER 2010

Maria Shriver and the nonprofit organization she founded, A Woman’s Nation, released The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in partnership with the Alzheimer’s Association. This was the first public report showing that women are disproportionately impacted by Alzheimer’s.

JANUARY 2011

The National Alzheimer’s Project Act (NAPA), legislation developed by the Alzheimer’s Association with Congressional champions to address the Alzheimer’s crisis, was signed into law.

NOVEMBER 2011

James Brown and Lex Lutzus, two young and relatively unknown producers from London, optioned the film rights to Still Alice. Richard Glatzer and Wash Westmoreland signed on to write the script and direct the film.

MAY 2012

As required by NAPA, the Department of Health and Human Services (HHS) released the first National Plan to Address Alzheimer’s Disease, with the goal of preventing and effectively treating Alzheimer’s by 2025.

AUGUST 2012

Julianne Moore signed on to play Alice in the film adaption. (!!!)

SEPTEMBER 2012

Maria Shriver and Elizabeth Gelfand Stearns attached to the film as executive producers. Maria lost her father, Sargent Shriver (January 2011), and Elizabeth lost her mother, Judy (2004), to Alzheimer’s.

APRIL 2013

Still Alice was chosen as one of thirty titles for World Book Night.

MAY 2013

Still Alice the PLAY, adapted by Christine Mary Dunford, premiered at the Lookingglass Theatre in Chicago.

2014

The first Alzheimer’s prevention trial targeting amyloid, the A4 Study, began. It enrolled more than 1,100 clinically normal people aged 65–85 who have biomarker evidence of elevated amyloid plaque levels in their brains, which may be an indicator of future cognitive decline years before dementia symptoms appear. The study is testing the efficacy of the anti-amyloid anti body solanezumab in reducing amyloid levels and preserving cognitive function. Results won’t be ready until 2022.

MARCH 2014

Still Alice the MOVIE was shot over five weeks in New York City and Long Island. Diagnosed with ALS, unable to speak and partially paralyzed, Richard Glatzer codirected the film by typing with one finger on an iPad.

SEPTEMBER 2014

Still Alice the MOVIE premiered at the Toronto International Film Festival. Two days later, Sony Pictures Classics acquired North American distribution rights amid Oscar buzz.

DECEMBER 2014

Dr. Rudy Tanzi and Dr. Doo Yeon Kim developed Alzheimer’sin-a-Dish, a 3-D gel model of Alzheimer’s in a tissue culture dish. Amyloid plaques and tangles appear in this 3-D model in just six weeks, compared to the one year that it takes for plaques alone to form in a mouse model. Alzheimer’s-in-a-Dish may greatly accelerate screening for potential drug therapies.

JANUARY 2015

New York City held the US premiere of Still Alice the MOVIE. When asked by a journalist what attracted her to the role of Lydia, Kristen Stewart told him that if this movie was done well, she’d have the chance to be in a film that would say something important. I’ve loved Kristen’s open heart and old-soul wisdom since the day I met her, and this comment made me love her even more.

FEBRUARY 2015

Julianne Moore won Best Actress Oscar for Still Alice. I was there, in the audience—thrilled, grateful, and weeping.

MARCH 10, 2015

Richard Glatzer died of ALS.

SUMMER 2015

Maria Shriver refined the mission of A Woman’s Nation and launched the Women’s Alzheimer’s Movement (WAM). Two thirds of people with Alzheimer’s are women. Through education and funding gender-based Alzheimer’s research, WAM is determined to find out why this disease disproportionally affects women’s brains.

FEBRUARY 2016

I gave the closing address about Alzheimer’s and empathy at the Perth International Arts Festival.

MAY 2016

The Alzheimer’s Association Rita Hayworth Gala raised more than $1 million for Alzheimer’s research, care, and support programs and honored Still Alice for its contribution to Alzheimer’s awareness.

APRIL 2017

I gave a TED Talk on the main stage in Vancouver: What You Can Do to Prevent Alzheimer’s. As of January 2019, it has been viewed almost 4 million times.

OCTOBER 2017

Along with Ken Dychtwald of Age Wave and George Vradenburg of UsAgainstAlzheimer’s, I served as senior advisor on the XPRIZE Alzheimer’s team. We designed a competition that, beginning late 2019, will globally crowdsource the discovery of an early diagnostic for Alzheimer’s that informs intervention or prevention.

JANUARY 2018

Bill Gates announced that he’s donating $100 million to Alzheimer’s research. Half will go to the Dementia Discovery Fund, an organization focusing on innovative research. The other half will fund a national patient registry in an effort to speed up recruitment for clinical trials and an international shared database to facilitate research and collaboration. Bill’s father has Alzheimer’s.

SEPTEMBER 2018

Congress approved the largest increase in federal funding for Alzheimer’s research at the National Institutes of Health for the fourth year in a row, bringing annual federal Alzheimer’s research funding to $2.3 billion.

FALL 2018

Still Alice the PLAY toured the UK.

2018

Naklada Ljevak publishing house purchased the rights to translate Still Alice in Croatian. Still Alice has now been translated into 37 languages.

In Memory of Angie

For Alena

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 something and couldn’t find it. She tapped her red pen on her bottom lip as she watched the digital numbers on the clock and listened for what she knew was coming.

Ali?

She tossed her pen onto the desk and sighed. Downstairs, she found him in the living room on his knees, feeling under the couch cushions.

Keys? she asked.

Glasses. Please don’t lecture me, I’m late.

She followed his frantic glance to the fireplace mantel, where the antique Waltham clock, valued for its precision, declared 8:00. He should have known better than to trust it. The clocks in their home rarely knew the real time of day. Alice had been duped too often in the past by their seemingly honest faces and had learned long ago to rely on her watch. Sure enough, she lapsed back in time as she entered the kitchen, where the microwave insisted that it was only 6:52.

She looked across the smooth, uncluttered surface of the granite countertop, and there they were, next to the mushroom bowl heaping with unopened mail. Not under something, not behind something, not obstructed in any way from plain view. How could he, someone so smart, a scientist, not see what was right in front of him?

Of course, many of her own things had taken to hiding in mischievous little places as well. But she didn’t admit this to him, and she didn’t involve him in the hunt. Just the other day, John blissfully unaware, she’d spent a crazed morning looking first all over the house and then in her office for her BlackBerry charger. Stumped, she’d surrendered, gone to the store, and bought a new one, only to discover the old one later that night plugged in the socket next to her side of the bed, where she should have known to look. She could probably chalk it all up for both of them to excessive multitasking and being way too busy. And to getting older.

He stood in the doorway, looking at the glasses in her hand but not at her.

Next time, try pretending you’re a woman while you look, said Alice, smiling.

I’ll wear one of your skirts. Ali, please, I’m really late.

The microwave says you have tons of time, she said, handing them to him.

Thanks.

He grabbed them like a relay runner taking a baton in a race and headed for the front door.

Will you be here when I get home on Saturday? she asked his back as she followed him down the hallway.

I don’t know, I’ve got a huge day in lab on Saturday.

He collected his briefcase, phone, and keys from the hall table.

Have a good trip, give Lydia a hug and kiss for me. And try not to battle with her, said John.

She caught their reflection in the hallway mirror—a distinguished-looking, tall man with white-flecked brown hair and glasses; a petite, curly-haired woman, her arms crossed over her chest, each readying to leap into that same, bottomless argument. She gritted her teeth and swallowed, choosing not to jump.

We haven’t seen each other in a while. Please try to be home? she asked.

I know, I’ll try.

He kissed her, and although desperate to leave, he lingered in that kiss for an almost imperceptible moment. If she didn’t know him better, she might’ve romanticized his kiss. She might’ve stood there, hopeful, thinking it said, I love you, I’ll miss you. But as she watched him hustle down the street alone, she felt pretty certain he’d just told her, I love you, but please don’t be pissed when I’m not home on Saturday.

They used to walk together over to Harvard Yard every morning. Of the many things she loved about working within a mile from home and at the same school, their shared commute was the thing she loved most. They always stopped at Jerri’s—a black coffee for him, a tea with lemon for her, iced or hot, depending on the season—and continued on to Harvard Yard, chatting about their research and classes, issues in their respective departments, their children, or plans for that evening. When they were first married, they even held hands. She savored the relaxed intimacy of these morning walks with him, before the daily demands of their jobs and ambitions rendered them each stressed and exhausted.

But for some time now, they’d been walking over to Harvard separately. Alice had been living out of her suitcase all summer, attending psychology conferences in Rome, New Orleans, and Miami, and serving on an exam committee for a thesis defense at Princeton. Back in the spring, John’s cell cultures had needed some sort of rinsing attention at an obscene hour each morning, but he didn’t trust any of his students to show up consistently. So he did. She couldn’t remember the reasons that predated spring, but she knew that each time they’d seemed reasonable and only temporary.

She returned to the paper at her desk, still distracted, now by a craving for that fight she hadn’t had with John about their younger daughter, Lydia. Would it kill him to stand behind her for once? She gave the rest of the paper a cursory effort, not her typical standard of excellence, but it would have to do, given her fragmented state of mind and lack of time. Her comments and suggestions for revision finished, she packaged and sealed the envelope, guiltily aware that she might’ve missed an error in the study’s design or interpretation, cursing John for compromising the integrity of her work.

She repacked her suitcase, not even emptied yet from her last trip. She looked forward to traveling less in the coming months. There were only a handful of invited lectures penciled in her fall semester calendar, and she’d scheduled most of those on Fridays, a day she didn’t teach. Like tomorrow. Tomorrow she would be the guest speaker to kick off Stanford’s cognitive psychology fall colloquium series. And afterward, she’d see Lydia. She’d try not to battle with her, but she wasn’t making any promises.

ALICE FOUND HER WAY EASILY to Stanford’s Cordura Hall on the corner of Campus Drive West and Panama Drive. Its white stucco exterior, terra-cotta roof, and lush landscaping looked to her East Coast eyes more like a Caribbean beach resort than an academic building. She arrived quite early but ventured inside anyway, figuring she could use the extra time to sit in the quiet auditorium and look over her talk.

Much to her surprise, she walked into an already packed room. A zealous crowd surrounded and circled a buffet table, aggressively diving in for food like seagulls at a city beach. Before she could sneak in unnoticed, she noticed Josh, a former Harvard classmate and respected egomaniac, standing in her path, his legs planted firmly and a little too wide, as if he was ready to dive at her.

All this, for me? asked Alice, smiling playfully.

What, we eat like this every day. It’s for one of our developmental psychologists, he was tenured yesterday. So how’s Harvard treating you?

Good.

I can’t believe you’re still there after all these years. You ever get too bored over there, you should consider coming here.

I’ll let you know. How are things with you?

Fantastic. You should come by my office after the talk, see our latest modeling data. It’ll really knock your socks off.

Sorry, I can’t, I have to catch a flight to L.A. right after this, she said, grateful to have a ready excuse.

"Oh, too bad. Last time I saw you I think was last year at the psychonomic conference. I unfortunately missed your

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