Despite Alzheimer's, She Is "Still Alice"

"Still Alice", a novel by Lisa Genova is "a poignant portrait of Alzheimer's ... Not a book you will forget." USA Today.

The book starts out with Alice Howland as a fifty-year-old cognitive psychology professor at Harvard. She is a world-renowned expert in linguistics with a likewise successful husband and three grown children. Unfortunately, she suddenly begins to become radically disoriented, forgetful, tongue-tied and is soon diagnosed with early onset Alzheimers. Her career, her family, her very world are rocked! The book is an astute psychological study of an Alzheimer-victim's perspective of what the disease is and how it shakes the very core of her existence. Brilliantly written!

September 2003

Alice is dumbfounded. She has always had near-perfect recall of scientific articles she has read. She has performed with excellence as a dynamic speaker, giving in-depth analytical comments in forums, raising mind-boggling questions and dispelling disputes. She has thrived on a brisk jog after work to maintain her physical capabilities. In September, however, Alice no longer has perfect recall ... she can no longer remember favorite scientific authors, she forgets specific psychological jargon and hears herself using the empty word "things" in her presentations and classes, she even becomes so disoriented while jogging a few blocks from home that she struggles to find her own way home. She is of course stressed and goes in for testing.

As a psychologist she is well aware of why certain neurological tests are given ... the Stroop, Raven's Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention, NYU Story Recall ... all designed to tease out any subtle weakness in integrity of language fluency, recent memory, and reasoning processes. She had given many of the tests before to her students, when she was in control. But today, she is no longer in control. She is the subject being tested.

The outcome ... Alzheimer's .... brain atrophy!

With her surface knowledge of Alzheimer's, she knows that the brain of an Alzheimer's patient has reduced levels of acetylcholine, a neurotransmitter important in memory and learning. She likewise knows the hippocampus, a seahorse-shaped structure in the brain critical for information of new memories, becomes mired in plaques and tangles, and that anomia, a pathological tip of the tongue, is another hallmark symptom. And she knows that someday, she will look at her husband and her children, her colleagues, and faces she's known and loved for forever, and she won't recognize them. And she knows that before that time comes she can expect delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, repetitive motor disturbances, sleep disruptions, changes in eating habits to name but a few. Alice chooses denial, denial that she has any problem and doubles her efforts in her work.

June 2004

Alice is back in a tiny testing room with Sarah Something. Oops, she has promptly forgotten the name after being introduced. In the Memory Disorders Unit at Mass General Hospital she is asked many questions about her present circumstances, her family, her visual orientation, words that begin with particular letters, and more. After a bit she is given a paper with an NYU story, a test of declarative memory performance:

"On Tuesday, July second, in Santa Ana, California, a wildfire shut down John Wayne Airport, stranding thirty travelers, including six children and two firemen."

She is asked to repeat the key details of the NYU story, which she does, and the testing continues. On to a Boston Naming Exam. She is asked to name a four-legged animal. "Racquet." And her stumbling of word recall becomes noticeable with the progression of pictures shown. "Oh, wait, I know what it is, it's a ladder for plants, a lattice? No. A trellis!" "Accordion, pretzel, rattle." "Oh, wait again. We have one in our yard at the Cape. It's between the trees, you lie on it. It's not a hangar. It's a ... halyard? No. Oh, god, it begins with H, but I can't get it." Sarah Something makes a notation on her score sheet. She sails through the WAIS-R Picture Arrangement test, Raven's Colored Progressive Matrices, the Luria Mental Rotation test, the Stroop test, and copying and remembering geometric figures. She has been in the testing room for over an hour, and then Sarah Something drops the bomb and asks her about the short story she read earlier.

Oops! "I don't really remember that much."
"That's okay. Tell me what you remember."
"Well, it was about an airport, I think."
"Did the story take place on a Sunday, Monday, Tuesday, or Wednesday?"
"I don't remember."
"Just take a guess then."
"Monday."
"Was there a hurricane, a flood, a wildfire, or an avalanche?"
"A wildfire."
"Did the story take place in April, May, June or July?"
"July."
"Which airport was shut down: John Wayne, Dulles, or LAX?"
"LAX."
"How many travelers were stranded: 30, 40, 50, or 60?"
"I don't know, 60."
"How many children were stranded: 2, 4, 6, or 8?"
"8."
"Who else became stranded: 2 firemen, 2 policemen, 2 businessmen, or 2 teachers?"
"2 firemen."
"Great, you're all done here. I'll walk you over to Dr. Davis."
Great? Was it possible that she remembered the story but didn't know she knew it?

October 2004

After jogging one day she enters her house. Her house? The refrigerator is in a different place. Well, maybe not, but it does seem different. The microwave? Hmm, some other things seem a bit odd, and then there is Lauren her next door neighbor suddenly standing behind her politely asking why she is in her kitchen. HER kitchen? Just whose kitchen is this? After that, whenever she returns from jogging she makes sure that she has the right house, the one with the note in bold black letters on the fridge saying:

ALICE,
DO NOT GO RUNNING WITHOUT ME.
MY CELL: 617-555-1122
ANNA: 617-555-1123
TOM: 617-555-1124

John made her promise not to go running without him. Recently her spatial perception has been off. Objects sometimes frequently appear closer or farther away than they actually are. She's had her eyes checked. They are fine. The problem isn't corneas, lenses or retina. The glitch is somewhere in the processing of visual information, somewhere in her occipital cortex. She evidently has the eyes of a college student but the occipital cortex of an octogenarian. She calls John in her impatience and anger at her life changes. John is in a meeting, but answers the phone anyway. He can't promise when or if they can jog today. He is busy, he has to go. Blazing anger overtakes her! Each time he doesn't take her she is consumed with the thought of losing more invaluable and irreplaceable neurons. She calls him back.

"I need to run today."
"I don't know yet when my day's going to end."
"So?"
"This is why I think we should get you a treadmill."
"Oh, fuck you," she said, hanging up.

She supposes that wasn't very understanding. She's had a lot of anger lately, but she couldn't say if this was a symptom of her disease advancing.

Summer 2005

She sat in a white wooden chair on a deck drinking tea when the man of the house [John] approaches her with a butterfly necklace [hers].
"That's not my necklace, that's my mother's. And it's special, so you'd better put it back, we're not supposed to play with it."
"I talked to your mom, and she said you could have it."
She studied his eyes and mouth for motive, but before she could decipher his sincerity, the beauty of the sparkling blue butterfly seduced her, overriding her concerns. "She said I could have it?"
"Uh-huh."
............................................

She sat on the floor in front of the full-length mirror in the bedroom she slept in and examines her reflection. The girl in the mirror has sunken, darkened circles under her eyes. Her skin looks loose and spotty all over and wrinkled at the corners of her eyes. Thick scraggly eyebrows need to be tweezed. Her curly black hair, wait, the girl's hair isn't black but is very shot with gray. The girl in the mirror looks ugly and old. Running her hands along her own cheeks and forehead she comes to a startling realization, "That can't be me. What's wrong with my face?" The girl in the mirror sickens her. "What's wrong with these mirrors?" The bathroom doesn't smell right either. There is a bucket on the floor offending her nose. She pries off the lid. Something white and sticky. She dips a brush in, and watches a creamy white paint dribble down. She knows each of the mirrors is defective, the one in the bathroom, the one in the bedroom where she slept. She found four more before she finished and had painted them all white.
............................................

She sat in a big white chair, and the man of the house [John] is in another one. He is reading a thick book and drinking a drink that is yellowish brown with ice in it. She picks up an even bigger book and thumbs through it. Her eyes pause on diagrams of words and letters. Her eyes land on individual words ... disinhibition, phosphorylation, genes, acetylcholine, priming, transience, demons, morphemes, phonological.
"I think I've read this book before."
The man looks over and nods. "You've done more than that. You wrote it. You and I wrote that book together."
Hesitant to take his word, she closes the book and reads the shiny blue cover, "From Molecules to Mind" by John Howland, PhD and Alice Howland, PhD. She looks up at the man. He's John. "John..."
"Yes." He draws closer.
"I wrote this book with you."
"Yes."
"I remember. I remember you. I remember I used to be very smart."
"Yes, you were, you were the smartest person I've ever known."