Definitely a tough read for most, I think, especially difficult for anyone with either themselves or a loved one diagnosed with Alzheimer’s. Written long enough ago that there have hopefully been gains in understanding and treating this patient, the book looks at the disease through the eyes of the victim.
Alice Howland, a 50-year-old woman with a Ph. D in neuroscience from Harvard University, is not exactly your average MC. Happily married to an equally brilliant, independent, and well-educated husband, they have three grown children when she begins to notice a change in her memory.
Following additional alarming shorts in her memory and a confusion not previously encountered, Alice sought help with what she could explain away as a possible menopausal effect. Perhaps hormone replacement therapy would help? But no, after all tests were in, the definitive diagnosis was early-onset Alzheimer’s disease.
According to AI, dementia is an “umbrella term for a decline in mental ability severe enough to interfere with daily life, while Alzheimer’s is a specific disease.” And Alzheimer’s is a progressive neurodegenerative brain disease leading to severe cognitive decline whereas dementia exhibits varied symptoms such as memory loss, confusion, and impaired reasoning.
“Attention, rehearsal, elaboration, or emotional significance was needed if perceived information was to be pushed beyond the recent memory space into longer-term storage, else it would be quickly and naturally discarded with the passage of time.”
“As her ability to track what was said in complex conversations with many participants declined, Alice’s sensitivity to what wasn’t said, to body language and unspoken feelings, had heightened.”
Of course, the book and explanations led to my own research into the specific gene associated with early onset Alzheimers, PS-1, whereas PS-2 can occur anywhere from 40-88 years of age.
And that’s probably what disturbed me most about the book. From the time Alice acknowledges she might be having a problem, the account launches into short bursts of months noted from September 2003 to the summer of 2005. Yeah, whoa, that’s fast! I couldn’t wrap my mind around that time frame.
Alice had to have hints of something major going on prior to her sudden loss of direction around Harvard University.
Alice had devised a simple test for herself when it could be determined she’d reach a line over which she did not wish to cross with the disease. Throughout the book, she administered the test to herself, gradually coming to the realization she could not answer even one of her five questions. Worse, consideration was not given to the actual act she was considering in that if she had reached her “butterfly” moment, could she still understand the instructions well enough to execute them?
If the book is not sufficient to answer your questions about the disease, it certainly does raise a number of them, which, in your own experience you’ll either research further or simply digest a new perspective.
I was able to secure both the ebook and the audiobook for this title at my local library and will mention that it’s possible the author should have found a professional narrator for her audiobook. The thoughts expressed here are my own as well as my interpretation of the consensus of the book club participants.
The publisher provides pointed questions for discussion at the book club, ably kept on topic by the facilitator.
A few of the items specifically examined were:
►What was the husband’s reaction to his wife’s diagnosis?
►What was the significance of her mother’s butterfly necklace?
►Is preserving the legacy of the person more important than the way she left it?
►What was the reaction of her husband to the failure of the trial med?
As always, a very lively discussion with all questions and many personally shared experiences of their own with loved ones. Certainly an extended dialogue on the experience of the inheritable gene. There was a wide range of reaction to the book, with a number disliking it as many as liking and, I believe, only two five-star votes.
Book Details:
Publisher: Pocket Books
Audiobook Publisher: Simon & Schuster Audio
Narrator: Lisa Genova
Publication Date: January 21, 2009
Title Link(s):
Amazon-US | Amazon-UK | Barnes & Noble | Kobo
The Author: Lisa Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University.
Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa has captured a special place in contemporary fiction, writing stories that are equally inspired by neurological conditions and our shared human condition. She is the New York Times bestselling author of the novels STILL ALICE, LEFT NEGLECTED, LOVE ANTHONY, INSIDE THE O’BRIENS, and EVERY NOTE PLAYED.
Her first work of nonfiction, REMEMBER: The Science of Memory and the Art of Forgetting, published March 2021, became an instant New York Times bestseller.
STILL ALICE was adapted into a film starring Julianne Moore, Alec Baldwin, Kristen Stewart, Kate Bosworth and Hunter Parrish. Julianne Moore won the 2015 Best Actress Oscar for her role as Alice Howland. Film adaptations for INSIDE THE O’BRIENS, EVERY NOTE PLAYED, and LEFT NEGLECTED are in development.
STILL ALICE was adapted for the stage by Christine Mary Dunford and premiered at the Lookingglass Theatre in Chicago in April 2013. It has since toured worldwide.
In 2015, Lisa was named one of the U.S. Top 50 Influencers in Aging by Next Avenue. She has appeared on Live with Kelly &Ryan, the TODAY show, CNN, PBS Newshour, Dr. Oz, and NPR and has been featured in the PBS specials Build a Better Memory Through Science and Supercharge Your Brain, as well as the documentary films To Not Fade Away and Have You Heard About Greg.
Her first TED talk, “What You Can Do To Prevent Alzheimer’s” has been viewed over eight million times. Her most recent TED talk, “How Memory Works–and Why Forgetting is Totally OK” was the sixth most watched TED talk of 2021. A sought-after speaker/edutainer, she has headlined in speaker series alongside Barack Obama, Joe Biden, Gloria Steinem, Jay Leno, Malala Yousafzai, and Goldie Hawn.
She received The Pell Center Prize for Story in the Public Square, for “distinguished storytelling that has enriched the public dialogue,” The Sargent and Eunice Shriver Profiles in Dignity Award, The Global Genes RARE Champions of Hope Award, and The American College of Neuropsychopharmacology Media Award for “informing the public about treatment and ongoing research in medical illness.”
She has received an Honorary Doctorate of Humane Letters from Bates College, The Alzheimer’s Association’s Rita Hayworth Award, The Huntington’s Disease Society of America Community Awareness Award, and the Grubby Award for literary excellence.
She serves on the Advisory Boards for The Women’s Alzheimer’s Movement, HFC (Hilarity for Charity), and Compassionate Care ALS.
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