I finished another reading-list book last week, Still Alice by Lisa Genova. And – the verdict – it is actually my favorite reading-list book to date. The novel recounts Alice’s descent into early onset Alzheimer’s disease at the age of 50. At the time, she is a renowned professor of psychology at Harvard University, happily married, a mother of three, and a frequent traveler. The clues are subtle: Alice forgets a key word during a speech, she cannot remember the name of someone at a party, she gets lost during a routine jog, and she fails to recall the significance of items on her to-do list.
As the book chronicles the slow and subtle progression of the disease, Alice eventually seeks medical attention and attends a genetic counseling appointment. Alice tests positive for early onset Alzheimer’s disease (EOAD). An intelligent woman to begin with, Alice struggles to maintain the use of her brain and shield herself from an embarrassing downhill drift.
A word on EOAD: EOAD can manifest between the ages of 30-40, but may be more common in the 50s. EOAD typically runs in families and some of those with EOAD have a mutation in one of three genes: APP, PSEN 1 and PSEN 2.
From a psychosocial stand-point, the book portrays the difficulties associated with loss of professional status, marital stress, child-parent interaction, genetic susceptibility in children, and – of course – grief, loneliness, resiliency, despair, and so on. Of her three children, two opt for testing. One daughter tests positive and utilizes PGD for her pregnancy.
I loved this book like I loved The Curious Incident of the Dog in the Nighttime – you really get in their heads, understanding a disease from the inside (The Curious focuses on autism spectrum disorder). The effect imparts a new sense of empathy. The following is an excerpt of Alice’s speech during an Alzheimer’s conference:
“We, in the early stages of Alzheimer’s, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Suess character in a bizarre land. It’s a very lonely and frustrating place to be…..
Please not look at our scarlet A’s and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses……….
I encourage you to empower us, not limit us. If someone has a spinal cord injury, if some one has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language and cognition….”