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The Daily

The Sunday Read: ‘The Vanishing Family: Life in the Shadow of a Cruel Genetic Mutation’

The Daily

The New York Times

Daily News, News

4.4102.8K Ratings

🗓️ 6 August 2023

⏱️ 47 minutes

🧾️ Download transcript

Summary

When Barb’s father all but left, her mother turned inward, sitting quietly in front of the television, always smoking, often with a cocktail. Something had overtaken her, though it wasn’t clear what. Six years later, Barb was 20 and in college when someone else in the family needed help. Her sister Christy was the second-born, 24 years older than Barb and the star of the family in many ways. But where once Christy was capable and professionally ambitious and socially conscious, now, at 44, she was alone, her clothes unkempt and ripped, her hair unwashed, her marriage over. Depression was the first suspected diagnosis, then schizophrenia, though neither seemed quite right. Christy wasn’t sad or delusional; she wasn’t even upset. It was more as if she were reverting to a childlike state, losing her knack for self-regulation. Her personality was diluting — on its way out, with seemingly nothing to replace it. What was left of Christy was chaotic and unpredictable. She refused to bathe and stopped bothering to make meals. She crashed a neighbor’s party and made odd conversation with strangers. She clogged a toilet with tampons and flooded the house. She was gleefully impulsive, spending thousands of dollars a year on magazine subscriptions. That strange, reckless profligacy made Barb think of their mother, who in her final years sat at home, saying yes to every sales phone call. How heartbreaking but also interesting, Barb thought, that Christy shared the same peculiar tendencies — a family trait of sorts.

Transcript

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0:00.0

Hi, I'm Robert Kolker and I'm a contributing writer to the New York Times magazine.

0:18.2

This is a story about a family.

0:22.0

There doesn't seem to be anything extraordinary about this particular family at all, except

0:27.1

maybe that there are a lot of siblings, nine, to be exact.

0:33.9

They're just middle-class Americans who mine their own business, a very ordinary family

0:40.1

that wants nothing more than to just stay ordinary.

0:45.5

And yet, each of them have something inside their genetic code that could severely curtail

0:50.8

their quality of life and completely change the lives of everyone around them.

0:59.8

This week's Sunday Reade is a story I wrote for the magazine about a family who learned

1:04.1

that they'd inherited a genetic mutation, one that causes a rare form of dementia.

1:11.6

It's something called FTD or frontotemporal dementia.

1:17.1

Even like Alzheimer's disease, FTD usually strikes in the prime of one's adult life.

1:22.4

You could be as young as, say, 40.

1:25.7

And it goes after the part of the brain responsible for planning, understanding social cues and

1:30.4

making judgments.

1:32.9

In the beginning, you start to act impulsively.

1:36.2

You have weird conversations with strangers.

1:40.2

Then your capacity for language starts to weaken.

1:43.8

You might have a master's degree and be an expert in something, but suddenly you're

1:47.9

talking like a fifth grader.

1:50.7

And then, as the years go on, your abilities get even more limited.

1:56.2

Until finally, you can't even take care of yourself.

...

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