Early-onset dementia forced a Modesto banker to retire. He has not given up the fight
Steven Barbieri began to worry about his mental health in 2012, when he was a bank executive in charge of a dozen Modesto-area branches.
“I was forgetting how to get from one Wells Fargo to another,” he said in a recent interview.
A visit with a neurologist brought devastating news: Barbieri had early-onset dementia, which forced him to retire that same year. He was 51.
Retiring did not mean quitting. Barbieri has become one of the area’s leading advocates for the Alzheimer’s Association, which supports families dealing with this and other forms of dementia.
The association will hold its annual Walk to End Alzheimer’s at various places around the country on Saturday, Sept. 12. Modesto’s will be virtual because of the COVID-19 limits on large gatherings.
Barbieri has faced down dementia with support from his wife, Tracy Barbieri. She was a long-time kindergarten teacher in Manteca but retired this past spring to devote more time to her husband. They have a son and two daughters, all grown.
Blows to the head over the years
Barbieri’s form of dementia is chronic traumatic encephalopathy, or CTE, caused by repeated blows to the head over time.
In his case, it was 40-plus years as a martial arts competitor, some of it before helmets were common. He also hit his head on a diving board years ago and was in two traffic accidents.
CTE gained attention by way of “Concussion,” a 2015 movie about a Pittsburgh doctor’s crusade on behalf of former NFL players with the disease. Will Smith played Dr. Bennet Omalu, who now has a pathology practice in Stockton.
Barbieri said he is at about 3.5 on the 7-point dementia scale, which at its far end leaves people unable to care for themselves.
He sometimes searches for words while speaking. He once mistook a store employee for his wife while Christmas shopping. He can forget where various foods are kept in the refrigerator.
“There are good days, and there are bad days, and there are really bad days,” he said.
The couple love to travel, but they have to take photos daily so he remembers where they went.
Barbieri knew back in 2012 that he could not continue with Wells Fargo, where he had risen to vice president and district manager. An accounting error on his watch could cost the bank millions of dollars, he said.
The later stages of dementia can bring more severe memory lapses and the inability to perform the most basics of tasks.
“My type of dementia will progress,” Barbieri said, “but I try and live in the moment and not worry about the future.”
There is no cure to date, but Barbieri does what he can for his mind and body. He eats healthy foods and takes vitamin supplements and a cannabis-based oil. He took part last year in a clinical trial for a drug called Gosuranemab, which proved ineffective.
Back in the ring for exercise
Barbieri has turned to martial arts, his old passion, as a means of fighting this disease. He does boxing-type exercises two mornings a week at the Bad to the Bonz gym in downtown Modesto.
He and owner-coach Tony Avila don the gloves for 10 three-minute rounds. Avila calls out various combinations of punches for Barbieri to throw, taking care not to touch the customer’s head.
“I like to make him miss punches, but he doesn’t miss many,” Avila said after a round Wednesday. He also has worked with people with Parkinson’s disease.
Barbieri that morning showed some of the skill that, earlier in life, earned him a fifth-degree black belt in Tae Kwon Do.
“It’s a great oxygen rush to the brain,” he said. “They say the No. 1 medication for somebody with dementia is exercise.”
He also golfs with friends and works out at home on a Peloton machine.
Despite all of this, the dementia still disrupts Barbieri’s sleep patterns. He needs to nap in a dark room each afternoon and is not focused again until morning.
Advocating in two states
About 690,000 people in California have Alzheimer’s or another form of dementia, the association said.
Barbieri served for three years on its board for the northern portions of California and Nevada.
He has talked with state and federal lawmakers about the needs of affected families, including those struggling to pay for care. His own burden was eased somewhat by the long-term disability insurance he had taken out before his diagnosis.
He and Tracy urge other families to look for the warning signs of dementia, such as memory lapses or mood changes. And to help spouses who might be covering for the afflicted people.
Modesto’s annual walk is usually one big gathering. This year, participants will watch the livestream of the 9 a.m. opening ceremony at Downey Park, then walk in their neighborhoods. Visit www.alzheimersblog.org to register or donate.
Family and travel
The Barbieris’ son, also named Steven, works for a resort company in Hawaii. Older daughter Brittany plans a career in human resources after completing a master’s degree at Grand Canyon University. Grace is at Modesto Junior College and hopes to be an attorney.
The couple got in a visit to Egypt just before COVID-19 upended travel early this year. They have been to Portugal, Ireland, Alaska, Mexico and other places, all in the spirit of living for the moment.
“I don’t want to die with dreams,” Steven said. “I want to die with memories.”
This story was originally published September 6, 2020 at 5:00 AM.
