Laura Seitz, Deseret News
SALT LAKE CITY — The banner on the website introducing him as a world-class economist and national speaker reads "Who is Jeff Thredgold?"
It's a question with new nuance. Thredgold, well-known nationally and in his native Utah for his optimism and warm humor, as well as the ability to charm a crowd while explaining complex money issues, wrestles with a neurodegenerative disease that is stealing his future.
His family struggles with how to survive his diagnosis and preserve his legacy.
Doctors say Thredgold, 61, has behavior-variant frontotemporal dementia. The disease is shrinking the frontal lobes of his brain, responsible for decision-making and behavior. After that, it will attack his temporal lobes, the seat of emotion and language.
The diagnosis and its aftermath have created family rifts and financial problems. But when you ask what is happening to him, there are two views.
On a recent sunny October afternoon, Thredgold shuffles down the stairs in his Farmington home, his sneakered feet waging a small fashion war with his crisp slacks. He recognizes a reporter who interviewed him often about a fumbling economy. But his speech pacing is off and his focus wanders.
He knows his diagnosis, he says. He just doesn't believe it. Or maybe he does, a little. If it's true, he adds, it's frightening. "But I don't see any differences and I feel great. They tell a different story."
Here, he points to his wife Lynnette and daughter Taylor, sitting a few feet away. "Are you going to tell their version or mine?"
The reporter promises to tell both.
When he says he had three small heart attacks, his wife gently shakes her head. They were anxiety attacks, she says, part of the illness. He has retired, closing the office he maintained for many years. He's no longer writing The Tea Leaf, his economic forecast. He had just signed with a prestigious speaking bureau and he hopes to have more engagements, but the bureau asked him to tell audiences he has been diagnosed with a degenerative brain disorder. He doesn't much like that idea. Instead, he says, he'll focus on writing his fifth book. And he wants to raise awareness of frontotemporal degeneration.
He pauses to tell a funny, but mildly off-color joke. With FTD, the lines of decorum get murky.
In April, he began acting strange, his wife and daughter say, even asking them to try beverages before he'd drink them. Something was off. He came home from giving a speech in April to find his wife, his six kids and their five spouses (one of his children is single) gathered for "an intervention." They took him to the hospital. It felt to him more like an abduction.
A different view
It started months before. Taylor Thredgold had been managing her dad's office at Thredgold Economic Associates for more than two years when he became increasingly agitated and irritable. It was shocking to the young woman who had never, in her 21 years, heard a cross word from her dad. "He was a jokester. He never yelled at me before. Not ever," she says earnestly.
It was an early — but not the first — sign of trouble. A couple of months before that, Jeff and Lynnette Thredgold, happily married more than a quarter century, began having marital problems. It was a shock. He doted on his wife and built a small concert stage in their home so she could woo guests with her violin skills. Proud to be the only economist to have earned the international Certified Speaking Professional designation, he hated to be away from her so much that he crafted a conference presentation called Money & Music that wed his speeches to her violin mastery. Yet there he was, tuning her out, making decisions without her, arguing. She got so frustrated that she temporarily left him.
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.
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.
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.
They honor John Silvestri's legacy in different ways, but mostly by who they have grown up to be, his daughter says. She wrote his story to make sense of it and to share him. The oldest daughter, Flavia, inherited his intelligence with money and decision-making. When she recently bought a house, says her sister, she was honoring his legacy. "I know he'd be proud of her." Their little sister, Nicole, spreads to others the seemingly endless compassion she developed growing up in the middle of the disease.
Silvestri sums up with a realization she shares with the Thredgolds and anyone else living such a diagnosis: "Life can be long and it can be very short," she says solemnly, and it can be both at the same time.
It seems to Lynnette Thredgold that her life has been cruising toward this circumstance, her own journey preparation for it. She is a professional violinist who has three CDs out and another in the works. Her music soothes Thredgold when he's restless, even mean in the evenings, a circumstance called "sundowning." He sleeps little, so she must be vigilant.
Recently, after a brief absence, she came home to find him stacking things into a tower. It was a mess, but she couldn't be mad. He was like a child, acting up. "Here I am. Pay attention."
Formerly a professional wrestler and body builder; her physical strength is valuable as he grows weaker but more combative. She grew up poor, she says, so that doesn't scare her, which may be a good thing.
She is surrounded by the life they have collected through hard work, from the showcase house to the trinkets from a passion for travel. He was always successful. He knew money – how to make it, how to care for it, how to give it generously to others. She's not sure she knows what to do.
"The law doesn't protect an illness like this," she says. "I have all the responsibilities and no income to pay. He had a business with employees, a huge office. All that is gone and I have to unwind the mess — and at the same time look after an ill man who doesn't believe he is ill."
A decade ago, they were named one of Salt Lake Magazine's power couples. Now she feels powerless as he sometimes sneaks off for spending binges he'd never have done while well. With no money coming in and the house and other obligations, undertaken in happier days, they face terminal financial hemorrhaging.
She has been trying to figure out what to do on many fronts. She's consulted professionals, but they often give contradictory advice. The disease is peeling layers from their lives. They have no long-term care and she is trying to sell the house. Trying to explain to him why they have to sell is the worst part, she says.
When they married, he had four children; together, they had two. The children help as much as they can, given their own families and obligations, she says. But there are rifts and she sometimes feels "the family is being torn apart."
Thredgold has been getting ready to golf for a couple of hours. It's still a passion and he holds a long-drive record. He golfed 36 holes every Saturday and Sunday with his dad as a kid.
Today, he'll go to the golf course a handful of blocks away, but first he will leave and come back multiple times to give gifts to his guests or add a few more words. He offers one of his books. Shortly, he returns with a smile and a couple of Lynnette's CDs. She's producing a show for singer-songwriter Paul Cactus-Jack LaMarr and Thredgold offers one of his CDs, too. The returning and giving are signs of the compulsive, repetitive nature of FTD.
"I hope he'll be able to keep golfing when I can't pay his golf fees," Lynnette says.
She's trying to figure out the right way to handle money when it comes to her husband. She is his legal guardian and has allowed him one credit card, mostly so she can track him if she needs to. He's physically very mobile. She can't watch him all the time; sometimes he literally sneaks out, tickled by his cleverness. She found him once hunkered down in luxury at an elegant hotel. It is a lifestyle he worked hard to earn, but one they can no longer afford and she mourns his sorrow when she says no.
"He was a workaholic, an awesome grandpa, a man who showed his love for family by working hard and making money and supporting all of us. He was involved and always went to his kids' many activities, but he was the on-task parent. I was the easy one."
His closet mirrors his story of decline. They got his-and-her closets because he was so picky and her more laid-back style drove him crazy. He kept his shoes, his shirts, his ties organized just so.
These days, chaos rules not just his clothing, but their lives and she says they're not handling it very well.
"Now he is exactly who he didn't want to be," she says.
Then she hugs him, holding on tight.
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