Lisa Genova - Still Alice

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SUMMARY: "Powerful, insightful, tragic, inspirational…and all too true." Alireza Atri, Massachusetts General Hospital Neurologist “Readers…are artfully and realistically led through…a window into what to expect, highlighting the importance of allowing the person with the disease to remain a vibrant and contributing member of the community…" Peter Reed, PhD, Director of Programs, National Alzheimer's Association “With grace and compassion, Lisa Genova writes about the enormous white emptiness created by Alzheimer’s in the mind of the still-too-young and active Alice. A kind of ominous suspense attends her gathering forgetfulness, and Genova puts us, sympathetically, right inside her plight. Somehow, too, she portrays the family’s response as a loving one, and hints at the other hopeful, helpful response that science will eventually provide.” Mopsy Kennedy, Improper Bostonian "An intensely intimate portrait of Alzheimer's seasoned with highly accurate and useful information about this insidious and devastating disease." Dr. Rudolph E. Tanzi, co-author, Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease “Her (Alice's) thought patterns are so eerily like my own...amazing. It was like being in my own head and like being in hers.” James Smith, diagnosed with Alzheimer’s, age 45 “...something for the world to read.” Jeanne Lee, author of Just Love Me: My Life Turned Upside-Down By Alzheimer’s “A laser-precise light into the lives of people with dementia and the people who love them.” Carole Mulliken, Co-Founder of DementiaUSA "A work of pure genius. This is the book that I and many of my colleagues have anxiously awaited. The reader will journey down Dementia Road in a way that only those of us with Dementia have experienced. Until now." Charley Schneider, author of Don't Bury Me, It Ain't Over Yet

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She didn't need to go anywhere. She felt lucky about this. She and the woman she sat with listened to the girl with very long hair play her music and sing. The girl had a lovely voice and big, happy teeth and a lot of skirt with flowers all over it that Alice admired.

Alice hummed along to the music. She liked the sound of her hum blended with the voice of the singing girl.

"Okay, Alice, Lydia will be home any minute. You want to pay Sonya before we go?" asked the woman.

The woman was standing, smiling, and holding money. Alice felt invited to join her. She got up, and the woman handed her the money. Alice dropped it in the black hat on the brick ground by the singing girl's feet. The singing girl kept playing her music but stopped singing for a moment to talk to them.

"Thanks, Alice, thanks, Carole, see you soon!"

As Alice walked with the woman among the medium children, the music became quieter behind them. Alice didn't really want to leave, but the woman was going, and Alice knew she should stay with her. The woman was cheerful and kind and always knew what to do, which Alice appreciated because she often didn't.

After walking for some time, Alice spotted the red clown car and the big nail polish car parked in the driveway.

"They're both here," said the woman, seeing the same cars.

Alice felt excited and hurried into the house. The mother was in the hallway.

"My meeting ended quicker than I thought it would so I came back. Thanks for filling in," said the mother.

"No problem. I stripped her bed but didn't have a chance to remake it. Everything's still in the dryer," said the woman.

"Okay, thanks, I'll get it."

"She had another good day."

"No wandering?"

"Nope. She's my trusty shadow now. My partner in crime. Right, Alice?"

The woman smiled, nodding enthusiastically. Alice smiled and nodded back. She had no idea what she was agreeing to, but it was probably fine with her if the woman thought so.

The woman began collecting books and bags by the front door.

"Is John coming up tomorrow?" asked the woman.

A baby they couldn't see started crying, and the mother disappeared into another room.

"No, but we've got it covered," said the mother's voice.

The mother came back carrying a baby dressed in blue, kissing him repeatedly on the neck. The baby still cried, but his heart really wasn't in it anymore. The mother's fast kisses were working. The mother plugged a sucking thing into the baby's mouth.

"You're okay, little goose. Thanks, Carole, so much. You're a godsend. Have a great weekend, see you Monday."

"See you Monday. Bye, Lydia!" the woman yelled.

"Bye, thanks, Carole!" a voice yelled from somewhere in the house.

The baby's big, round eyes met Alice's, and he smiled in recognition behind his sucking thing. Alice smiled back, and the baby responded with a wide-mouthed laugh. The sucking thing fell to the floor. The mother squatted down and picked it up.

"Mom, you want to hold him for me?"

The mother passed the baby to Alice, and he slid comfortably into her arms and on her hip. He began pawing at her face with one of his wet hands. He liked doing this, and Alice liked letting him. He grabbed her bottom lip. She pretended to bite it and eat it while making wild animal noises. He laughed and moved on to her nose. She sniffed and sniffed and pretended to sneeze. He moved up to her eyes. She squinted so she wouldn't get poked and blinked to try to tickle his hand with her eyelashes. He moved his hand up her forehead to her hair, tightened his little fist, and pulled. She gently unclenched his hand and replaced her hair with her index finger. He found her necklace.

"See the pretty butterfly?"

"Don't let him put that in his mouth!" called the mother, who was in another room but within eyeshot.

Alice wasn't about to let the baby mouth her necklace, and she felt wrongly accused. She walked into the room where the mother was. It was crowded with all kinds of birthday party-colored baby-seat things that beeped and buzzed and talked when the babies banged on them. Alice had forgotten that this was the room with all the loud seats. She wanted to leave before the mother suggested she put the baby in one of them. But the actress was in here, too, and Alice wanted to be in their company.

"Is Dad coming this weekend?" asked the actress.

"No, he can't, he said next week. Can I leave them with you and Mom for a little while? I need to go to the store. Allison should sleep another hour."

"Sure."

"I'll be quick. Need anything?" the mother asked as she walked out of the room.

"More ice cream, something chocolate!" yelled the actress.

Alice found a soft toy with no noisy buttons and sat down while the baby explored it in her lap. She smelled the top of his almost-bald head and watched the actress read. The actress looked up at her.

"Hey, Mom, will you listen to me do this monologue I'm working on for class and tell me what you think it's about? Not the story, it's kind of long. You don't have to remember the words, just tell me what you think it's about emotionally. When I'm done, tell me how I made you feel, okay?"

Alice nodded, and the actress began. Alice watched and listened and focused beyond the words the actress spoke. She saw her eyes become desperate, searching, pleading for truth. She saw them land softly and gratefully on it. Her voice felt at first tentative and scared. Slowly, and without getting louder, it grew more confident and then joyful, playing sometimes like a song. Her eyebrows and shoulders and hands softened and opened, asking for acceptance and offering forgiveness. Her voice and body created an energy that filled Alice and moved her to tears. She squeezed the beautiful baby in her lap and kissed his sweet-smelling head.

The actress stopped and came back into herself. She looked at Alice and waited.

"Okay, what do you feel?"

"I feel love. It's about love."

The actress squealed, rushed over to Alice, kissed her on the cheek, and smiled, every crease of her face delighted.

"Did I get it right?" asked Alice.

"You did, Mom. You got it exactly right."

POSTSCRIPT

The clinical trial drug Amylix, described in this book, is fictional. It is, however, similar to real compounds in clinical development that aim to selectively lower levels of amyloid-beta 42. Unlike the currently available drugs, which can only delay the disease's ultimate progression, it is hoped that these drugs will stop the progression of Alzheimer's. All other drugs mentioned are real, and the depiction of their use and efficacy in the treatment of Alzheimer's disease is accurate as of the writing of this story.

For more information about Alzheimer's disease and clinical trials, go to http://www.alz.org/alzheimers_disease_clinical_studies.asp.

Readers Club Guide for

Still Alice

by Lisa Genova

Discussion Questions

1. When Alice becomes disoriented in Harvard Square, a place she's visited daily for twenty-five years, why doesn't she tell John? Is she too afraid to face a possible illness, worried about his possible reaction, or some other reason?

2. After Alice first learns she has Alzheimer's disease, "The sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room". What do you think of Alice's reaction to the diagnosis? Why does she disassociate herself to the extent that she feels she's having an out-of-body experience?

3. Do you find irony in the fact that Alice, a Harvard professor and researcher, suffers from a disease that causes her brain to atrophy? Why do you think the author, Lisa Genova, chose this profession? How does her past academic success affect Alice's ability, and that of her family, to cope with Alzheimer's?

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