Untangle

What would you do if you had a 50 percent chance of developing a devastating genetic form of dementia—and you could take a test to find out whether you carried the mutation?
In this episode, Journalist and Bestselling Author Robert Kolker joins me to talk about his newest book The Vanishing Family, Love, Fate and the Quest to End Dementia and the extraordinary family at the center of his story.
The family lives with an inherited form of frontotemporal dementia (FTD), a disease that can dramatically alter personality and behavior while leaving memory relatively intact in the early stages. Their experience raises enormous questions—not only about dementia and medical research, but about identity, family, parenting, caregiving, and how we choose to live when we cannot know what the future holds.
In this conversation, we explore:
Why Bob Kolker became fascinated with this family's story
The family's rare genetic form of frontotemporal dementia
What it means to face a 50 percent chance of inheriting a disease-causing mutation
The agonizing decision of whether—or whether not—to undergo genetic testing
Why some family members chose to know their genetic status while others chose not to
How the younger generation faces questions about marriage, children, IVF, and genetic risk
Why frontotemporal dementia can look so different from the dementia most people associate with Alzheimer’s
How personality, behavior, and social awareness can change while memory remains intact
The question of whether a person with advanced dementia has truly “vanished”
What Bob learned about the personalities and skills that can make someone an effective caregiver
Why caregiving can become isolating—and why caregivers may need far more support
The challenge of developing treatments for rare diseases when there aren't enough patients to make traditional drug development financially attractive
Why rare genetic diseases may offer important clues for understanding more common neurological diseases
The emerging scientific interest in tau and its potential connection to future dementia treatments
The complicated question of whether having more genetic information actually gives us more control
And what Bob learned from this family about living in the present and spending our energy on what really matters

One of the most powerful ideas in our conversation is that dementia isn't necessarily an on/off switch—and that a person doesn't simply “vanish” when their memory or personality changes. Bob talks about the possibility of recognizing the person who remains, even amid profound neurological change.
He also reflects on how the experience changed his own life: he plans less, lives more in the present, and tries not to waste energy on things that ultimately don't matter.
About Bob Kolker
Bob Kolker is an award-winning journalist and author whose work often explores families confronting extraordinary circumstances. In this conversation, he brings together deeply reported family stories with questions about genetics, neuroscience, dementia, caregiving, and the future of medical research.
Resource: Robertkolker.com
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NEW: NEW: You can pre-order the book The Questions That Make A Life, featuring the best of our Untangle guests, by Patricia Karpas.
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Encore: Today I sit down with neurologist and neuroscientist Dr. Majid Fotuhi to unpack the science of neuroplasticity — the brain’s remarkable ability to change, rewire, and grow at any age. He’s adjunct professor at Johns Hopkins and author of the book The Invincible Brain: The Clinically Proven Plan to Age-Proof Your Brain and Stay Sharp for Life. We discuss many things related to his book, from building new connections to strengthening memory-related regions of the brain, to the five pillars of brain health…fitness, sleep, nutrition, mindset and brain training. , Dr. Fotuhi explains why “age-related cognitive decline” and even Alzheimers isn’t as inevitable as we’ve been led to believe. I was particularly intrigued with his concept of "the soup of abnormalities." There’s lot’s of great stuff here.
NEW: You can pre-order the book The Questions That Make A Life, featuring the best of our Untangle guests, by Patricia Karpas.
Now on Amazon: https://www.amazon.com/Questions-That-Make-Life-Required/dp/B0HHMFBGBM/ref=sr_1_1?crid=2F9Y0J4VRF3U8&dib=eyJ2IjoiMSJ9.2qyZZW4cR-h-puqXomsUaTW5uA5Zm9ujmTixdiGDQuUewL7FvO1YV046kntTG8CgUkaF43gkXOvS4-krFOirLok0pi5a3z5P0V-X_uY2OnkLyt6bk_NGiQVR5qUoXApJOTU9tmkfbuIJyxnjCibfA5TH7ALhs-oglpLW4ImtIFQp8OGDDRDFW1jgzuaHFbs7nWtY-i3qUihonew6L-3Kw6SqwpJpRN9XNxB7jUKsoFk.V7f6pO_BsTLEu8mBvm482Oak1nryHBXbj8ZYXBQe_Y4&dib_tag=se&keywords=the+questions+that+make+a+life&qid=1790960931&sprefix=the+questions+that+make+a+lif%2Caps%2C192&sr=8-1
Resource:
https://neurogrow.com/
https://drfotuhi.com/
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Welcome to a special edition of Untangle, Meditation Mondays. We’re taking this time to share meditations from our sister app, Meditation Studio. We know that life gets messy and, when it does, Meditation is here to help us find a sense of calm and inner peace. Whether you’re facing daily work or relationships stress, unexpected challenges, or just want to improve focus, we hope meditation Monday’s will be your go to for a weekly guided meditation treat. And if you’re craving more…which I always do…the Meditation Studio app offers over 800 expert-guided meditations from over 75 of the world’s top meditation experts.And best of all…get 30 days of Meditation Studio for free at choosemuse.com/meditationstudio.
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A wonderful encore episode. I loved talking to today’s guest, Kieran Setiya, an Author and Professor of philosophy at MIT. I’ve always loved philosophy, but I was especially taken with the way Kieran applies it to our most challenging events, as well as to our day to day lives. In his book Life Is Hard, How Philosophy Can Help Us Find Our Way — he offers us a roadmap for navigating rough terrain, from personal trauma to loneliness to grief to failure and the myth of the ideal life to injustice and even the absurdity of the world. It’s hard to summarize this discussion because there’s so much here, but his wisdom is rich with guidance on how we can face suffering and life’s inevitable hardships. He’s so eloquent in how he shares his insights on life >> from his rich archive of philosophy to his own personal journey. Life is a collection of small successes and small failures. And A good life, he says, is a way of living every day, DESPITE the hard stuff. He inspired me to reflect on quite a bit here. How do I live well, what makes a life meaningful, how do I face regret, aging, uncertainty…even what should I hope for given where I am in my own life.
He was originally inspired to philosophy by his own sense of wonder and undertow of worry at 7 yrs old. I love that…a blend of worry and wonder, anxiety and awe. How perfectly true!!
Kieran is also the author of Midlife: A Philosophical Guide. His writing has appeared in the Los Angeles Review of Books, The New York Times,the Boston Review,the London Review of Books, The Atlantic, and The Yale Review.
As always, we’re Untangle, the podcast from Muse, the brain sensing headband dedicated to unlocking your brains potential. Check out choosemuse.com and use code untangle15 for your discount.
Resource: ksetiya.net
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Today's meditation is by Melli O'Brien and was created to inspire you to connect with what matters most. It can also be found on the Muse and Meditation Studio apps.

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