Still Alice and other stories of neuroscienceStill Alice and other stories of neuroscience
All In The Mind
Lisa Genova is a neuroscientist turned author. Little did she know that her first self-published novel about early onset dementia—Still Alice—would hit the best seller list. Now Lisa Genova has applied her engaging storytelling to an Irish Catholic family overtaken by the genetic neurological condition called Huntington’s disease.
28:49•28 Feb 2016
Still Alice, Huntington’s and How Storytelling Changes Our View of Brain Disease
Episode Overview
- Fiction can answer the crucial question science often leaves out: what it actually feels like to live with a brain disease.
- Early onset Alzheimer’s is the same disease as late-onset but collides far more sharply with careers, parenting and daily responsibilities.
- Alzheimer’s has long been hidden by shame and fear, and stories like Still Alice have helped bring it into everyday conversation.
- Huntington’s disease is a fully genetic, fatal condition where each child of an affected parent faces a 50–50 chance of inheriting it.
- Choosing whether to undergo genetic testing for Huntington’s involves complex emotional, practical and ethical considerations that differ for each person.
“In the end, every breath is a risk. Love is why we breathe.”
This episode dives deep into the challenges and triumphs of living with devastating brain conditions, all told through gripping stories rather than medical jargon. You'll hear how neuroscientist-turned-novelist Lisa Genova moved from lab benches to bestsellers, using fiction to answer the question she couldn’t find in research papers: "What does it feel like to have this?" The conversation begins with Still Alice, the story behind Julianne Moore’s Oscar-winning portrayal of a 50-year-old Harvard professor with early onset Alzheimer’s.
Lisa explains why textbook knowledge of "amyloid beta and plaques and neurofibrillary tangles" didn’t help her be a better granddaughter to her grandmother, but imagining life from inside the disease did. Her line "I am not suffering. I am struggling" captures the determination to stay connected to identity, even as memory slips away.
She talks about how early onset dementia collides with careers, parenting and responsibility, making tiny cognitive lapses "exquisitely noticeable" at 50 in a way they aren’t at 85. The title Still Alice grew from emails where people with Alzheimer’s repeated, "I’m still here. I still love my husband. I still want to contribute." It’s a reminder that personhood isn’t erased by diagnosis. The focus then shifts to her novel Inside the O’Briens and the brutal genetics of Huntington’s disease.
Through Boston cop Joe O’Brien and his four adult children, Lisa lays out what it means to live with a 50–50 chance of a condition that is "100% fatal" and has "no treatment and no cure." The emotional punch lands in Katie’s realisation: "In the end, every breath is a risk. Love is why we breathe." Across Alzheimer’s and Huntington’s, the episode keeps coming back to stigma, fear and the healing power of honest conversation.
If stories can help people say "that’s going on in my family" instead of hiding in shame, what kind of change could they spark in your own life and relationships?
Do you want to link to this podcast?
Get the buttons here!
More From This Show
The latest episodes from the same podcast.