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Preserving legacy: Renowned economist, speaker battles disease

Published: Friday, Oct. 26 2012 12:06 a.m. MDT

But they loved each other, so they went to counseling. Within a short time, they were back together and by March they were enjoying what she calls a "rehoneymoon," She noticed that "he was emotional, but it was good emotion."

That was before April, when life as they knew it blew apart.

FTD

Thredgold remembers the testing at the hospital. Though his diagnosis is dementia, his memory is quite sharp. Emotion, judgment and inhibition are most challenged by early behavioral FTD.

The Association for Frontotemporal Degeneration, headquartered in Radnor, Pa., explains FTD as a group of disorders that share clinical features. Its "hallmark" is gradual, progressive decline in behavior and/or language, usually in the mid-50s or 60s, though it has started as young as 21 and as old as 80. Those bearing its burden find it ever-harder to plan, to organize, to behave as they should or care for themselves.

The group's website, theaftd.org, says 10-20 percent of all dementia cases are FTD. As many as 60,000 Americans have it.

Experts in FTD at University of California San Francisco say loved ones may first notice apathy. One may become self-centered, emotionally absent, withdrawn, uncaring.

He spent 10 days in a psychiatric ward while they diagnosed him, fretful because he could not care for or build his business.

He tried not to think about the rest of what the doctor said. Something about an incurable disease, a lack of effective treatments and eventual death.

"I asked the kids to treat me as if nothing has changed. I see my kids and grandkids more. I am frustrated with anybody who talks about the disease. I am articulate, charismatic on stage, the best in the world at what I do," he adds.

Interjects his wife, quietly, an aside: "That's the disease. He was always a very humble man. If he knew right now what was going on with him, he wouldn't be able to stand it."

UCSF talks of impulsive behavior and conduct that embarrasses caregivers. Impulsivity and inappropriate behaviors like overeating, outbursts, touching strangers may be punctuated with restlessness, irritability, outbursts, emotionalism and other personality changes. They've seen some of those, says Taylor. They are braced.

What the experts can't predict is the toll on an individual or family — that Thredgold's adult children would sometimes cry for a dad now lost, that disagreements would blossom and rifts rise or that the house the Thredgolds built together will have to go.

Honoring legacy

Hanging onto the essence of a person and what they've contributed to the world is a universal quest in families where a mind-stealing disease rampages. Stefania Silvestri, 28, of Los Angeles, just published a book called "Beside the Mountain" about her family's journey with her dad's early Alzheimer's. He was diagnosed at 48, when his daughters were 7, 14 and 18. The book is a moving account of their efforts to honor his past and soften his present.

Silvestri, the middle child, remembers pretending he was still their father while longing alternately to escape and to take advantage of his weaknesses. She was, after all, a child then. She often baby-sat him, she says, and had to figure out ways to spare his feelings, to not let him know his little girl was in charge.

When her husband needed constant care, Silvestri's mother put him in a nursing home, then got a job there to make sure he was well cared for. Love and a sense of responsibility take people on a different journey than they planned sometimes.

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