Utah economist's family donates brain for hope after debilitating disease
SALT LAKE CITY (KUTV) Family of a Utah man who passed away after five years of slowly losing his mind to a debilitating disease wants a cure.
Currently, there’s no hope for patients diagnosed with Frontotemporal degeneration.
Jeff Thredgold was a prominent economist in Utah when the disease struck. He was working for Key Bank, was a celebrated author, went on speaking tours around the country, and even appeared on 2News occasionally – talking about Utah’s economy. But everything changed in 2012.
“No one noticed anything, that anything was wrong in any of his speeches, until July. Then it was clear he was not the man he was,” explained Jeff’s wife Lynette.
Jeff started acting out. At times he became aggressive, paranoid, angry and emotional. All the while, his family didn’t know what was going on.
“He ended up at Hill Air Force Base, he got lost, they had no idea what was happening to him. All of a sudden all these guns were at him. And he was forced to open up the trunk,” Lynette Thredgold explained.
His daughter Taylor, who worked with him, started noticing a change in his behavior at work.
She recalled one day in 2012, “he came into the office and he wanted to write a 'Tea Leaf' on War of the Worlds. He was so proud of that movie. and it was a good movie. but it did not need to be written on the 1,000-word newsletter that he wrote for 40 years. And I said, ‘Dad I'm not going to let you do this’, and he got so mad at me. And that's where it clicked,” Taylor explained.
Family sought help, but even with multiple hospital visits, doctors couldn't figure out what was wrong.
“During that time he had four hospital stays at psych wards. They thought he was bipolar,” Lynette said.
Finally, two years later, a doctor had an answer: Frontotemporal degeneration.
“I think it was hard on Jeff because he just heard this doctor tell us he would one day die of this and one day be a vegetable,” Lynette said.
Currently, there’s no treatment and no cure for patients.
“FTD or Frontotemporal degeneration affects about 50 to 60,000 individuals in the US; it is categorized as a rare disease and it is a dementia,” explained Bonnie Shepherd, a member of the board of directors for the Association for Frontotemporal Degeneration.
Bonnie says it’s very difficult to diagnose the disease, and when it is unofficially diagnosed, there’s no hope. She says that needs to change.
“It’s very difficult to see, to lose the person that you knew,” Bonnie said.
Bonnie knows what the Thredgold family experienced, because she went through it too when her husband was diagnosed.
“It attacks people, men and women who are in the prime of their life. They're working, (they have) careers, they have this this behavior or language or some kind of issue. And it often takes a long time to diagnose. and it's very difficult for the family and for the children,” she said.
Bonnie says the association is working to fund research. The disease can't be officially diagnosed until a brain autopsy. That’s when doctors can tell whether a patient has a type of the disease that can be passed on to family.
Jeff's youngest daughter Taylor says she's worried for the future.
“I'm scared that I’ll get it, I'm scared that my siblings will get it,” Taylor Thredgold says. “Obviously we have a higher chance because there are signs of showing it's genetic.
Family says during moments of clarity before he died, Jeff decided to donate his brain to research, to hopefully find a cure, and prevent other family members, and other people, from facing this same disease.
We're doing this for his family, we're doing this for his children. Because the children are more likely to get this disease,” Lynette said.
For more information about FTD and the latest research, visit TheAFTD.org.