Lisa Genova - Still Alice

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Still Alice: краткое содержание, описание и аннотация

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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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"It's your BlackBerry, it was in the freezer."

He pressed its buttons, shook it, and rubbed it.

"It looks like it got water in it, we can see after it's thawed, but I think it's dead," he said.

She burst into ready, heartbroken tears.

"It's okay. If it's dead, we'll get you a new one."

How ridiculous, why am I this upset over a dead electronic organizer? Maybe she was really crying over the deaths of her mother, sister, and father. Maybe she was feeling emotion that she'd anticipated earlier but had been unable to express properly at the cemetery. That made more sense. But that wasn't it. Maybe the death of her organizer symbolized the death of her position at Harvard, and she was mourning the recent loss of her career. That also made sense. But what she felt was an inconsolable grief over the death of the BlackBerry itself.

FEBRUARY 2005

She slumped into the chair next to John, across from Dr. Davis, emotionally weary and intellectually tapped. She'd been taking various neuropsychological tests in that little room with that woman, the woman who administered the neuropsychological tests in the little room, for a torturously long time. The words, the information, the meaning in the woman's questions and in Alice's own answers were like soap bubbles, the kind children blew out of those little plastic wands, on a windy day. They drifted away from her quickly and in dizzying directions, requiring enormous strain and concentration to track. And even if she managed to actually hold a number of them in her sight for some promising duration, it was invariably too soon that pop! they were gone, burst without obvious cause into oblivion, as if they'd never existed. And now it was Dr. Davis's turn with the wand.

"Okay, Alice, can you spell the word water backwards for me?" he asked.

She would have found this question trivial and even insulting six months ago, but today, it was a serious question to be tackled with serious effort. She felt only marginally worried and humiliated by this, not nearly as worried and humiliated as she would've felt six months ago. More and more, she was experiencing a growing distance from her self-awareness. Her sense of Alice--what she knew and understood, what she liked and disliked, how she felt and perceived--was also like a soap bubble, ever higher in the sky and more difficult to identify, with nothing but the thinnest lipid membrane protecting it from popping into thinner air.

Alice spelled water forward first, to herself, extending the five fingers on her left hand, one for each letter, as she did.

"R." She folded down her pinkie. She spelled it forward to herself again, stopping at her ring finger, which she then folded down.

"E." She repeated the same process.

"T." She held her thumb and pointer finger like a gun. She whispered, "A, W," to herself.

"A, W."

She smiled, her left hand raised in a victorious fist, and looked at John. He spun his wedding ring and gave a dispirited smile.

"Good job," said Dr. Davis. He smiled widely and seemed impressed. Alice liked him.

"Now, I'd like you to point to the window after you touch your right cheek with your left hand."

She lifted her left hand to her face. Pop!

"I'm sorry, can you tell me the directions again?" asked Alice, her left hand still poised in front of her face.

"Sure," Dr. Davis obliged knowingly, like a parent who let a child get away with peeking at the top card in a game of cards or inching across the start line before yelling "go." "Point to the window after you touch your right cheek with your left hand."

Her left hand on her right cheek before he finished talking, she jerked her right arm at the window as fast as she could and let out a huge exhale.

"Good, Alice," said Dr. Davis, smiling again.

John offered no praise, no hint of pleasure or pride.

"Okay, now I'd like you to tell me the name and address I asked you to remember earlier."

The name and address. She had a loose sense of it, like the feeling of awakening from a night's sleep and knowing she'd had a dream, maybe even knowing it was about a particular thing, but no matter how hard she thought about it, the details of the dream eluded her. Gone forever.

"It's John Somebody. You know, you ask me this every time, and I've never been able to remember where that guy lives."

"Okay, let's take a guess. Was it John Black, John White, John Jones, or John Smith?"

She had no idea but didn't mind playing along.

"Smith."

"Does he live on East Street, West Street, North Street, or South Street?"

"South Street."

"Was the town Arlington, Cambridge, Brighton, or Brookline?"

"Brookline."

"Okay, Alice, last question, where's my twenty-dollar bill?"

"In your wallet?"

"No, earlier, I hid a twenty-dollar bill somewhere in the room, do you remember where I put it?"

"You did this while I was here?"

"Yes. Any ideas at all come to mind? I'll let you keep it if you find it."

"Well, if I'd known that, I would've been sure to figure out a way to remember it."

"I'm sure you would've. Any idea where it is?"

She saw the focus of his stare deviate to her right, just over her shoulder, for the briefest moment before settling back on her. She twisted around. Behind her, there was a whiteboard on the wall with three words scrawled on it in red marker: Glutamate. LTP. Apoptosis. The red marker lay on a tray at the bottom, right next to a folded twenty-dollar bill. Delighted, she stepped over to the whiteboard and claimed her prize.

Dr. Davis chuckled. "If all my patients were as smart as you, I'd go broke."

"Alice, you can't keep that, you saw him look at it," said John.

"I won it," said Alice.

"It's okay, she found it," said Dr. Davis.

"Should she be like this after only a year and being on medication?" asked John.

"Well, there are probably a few things going on here. Her illness probably started long before she was diagnosed last January. She and you and your family and her colleagues probably disregarded any number of symptoms as fluke, or normal, or chalked them up to stress, not enough sleep, too much to drink, and on and on. This could've gone on easily for a year or two or longer.

"And she's incredibly bright. If the average person has, say for simplicity, ten synapses that lead to a piece of information, Alice could easily have fifty. When the average person loses those ten synapses, that piece of information is inaccessible to them, forgotten. But Alice can lose those ten and still have forty other ways of getting to the target. So her anatomical losses aren't as profoundly and functionally noticeable at first."

"But by now, she's lost a lot more than ten," said John.

"Yes, I'm afraid she has. Her recent memory is now falling in the bottom three percent of those able to complete the tests, her language processing has degraded considerably, and she's losing self-awareness, all as we'd unfortunately expect to see.

"But she's also incredibly resourceful. She used a number of inventive strategies today to answer questions correctly that she couldn't actually remember correctly."

"But there were a lot of questions that she couldn't answer correctly, regardless," said John.

"Yes, that's true."

"It's just getting so much worse, so quickly. Can we up the dosage of either the Aricept or the Namenda?" asked John.

"No, she's at the maximum dosage already for both. Unfortunately, this is a progressive, degenerative disease with no cure. It gets worse, despite any medication we have right now."

"And it's clear she's either getting the placebo or this Amylix drug doesn't work," said John.

Dr. Davis paused as if considering whether to agree or disagree with this.

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