For five years Evan Schrier, now 48, and his wife, Allyson Schrier, were told Evan had ADHD (attention deficit hyperactivity disorder). This misdiagnosis, and Evan’s behavior, threw the entire family into a rabbit hole they never expected.

Most people associate dementia and Alzheimer’s disease with those of very advanced age. But Evan Schrier’s story blows that theory to pieces. He has frontal temporal dementia, or Pick’s disease, one of the most misunderstood and misdiagnosed of the dementias. There is no cure.

Evan was a bright, engaged software engineer with Microsoft when, in 2002, he decided to pursue his Ph.D. in computer science. He was 37 at the time. Six years into the program he was realizing that he couldn’t write a paper. He was missing deadlines on projects, which Allyson said was very uncharacteristic.

He couldn’t solve problems, so he abandoned the Ph.D. program.

“He was pretty freaked out,” Allyson said. “Like, why can’t I get this done?”

He also had been a very engaged dad to the couple’s two sons, Ari, now 16, and Eli, 14.

But he started to ignore the boys when he came home from work, preferring to play computer games instead. Gradually he lost interest in the things he loved — kayaking, rafting, backpacking — all the things he and Allyson enjoyed doing together.

In 2006 a psychiatrist diagnosed Evan with ADHD. He went back to Microsoft, but six months into the job it wasn’t working because he was tasked with research and writing papers, the very same thing that forced him to drop out of the Ph.D. program at the University of Washington. Allyson said he took a year off while they experimented with different drugs for ADHD.

He landed another job, which he was very excited about, with a gaming company called Sucker Punch Productions.

By 2009 to 2010, Allyson began to notice social changes. Normally very social and outgoing, Evan began to disengage. His friends felt he was angry with them because he was so terse. Within a year, Sucker Punch let him go, which he blamed on the ADHD medications which he said “agitated him.”

Allyson said Microsoft took him back in June 2010, but within three months he was complaining that people didn’t respect him.

“Things were getting really muddy at home,” she said.

A new retaining wall was needed at their Fall City home, and Evan showed no interest in the project. While she and the boys, with help from neighbors, shoveled heavy rock, Evan stayed inside. Allyson’s anger at his perceived laziness was building up inside.

On Christmas Eve 2010, Evan’s parents flew in for the holiday from Rhode Island.

“They were in denial,” Allyson said.

She had been holding the fort down, cooking, cleaning — everything — so she decided to go for a walk.

“I came back and his car was gone,” she said. “Six hours later, as I was serving dinner he showed up.”

She said she cornered him at the door and asked where he’d been. She was astonished to learn that he’d been at the Microsoft office printing out “Dungeons and Dragons,” because he didn’t want to do it on his home computer — on Christmas Eve.

By the spring of 2011, Allyson said she knew something was very, very wrong. She knew he was going to lose his job at Microsoft since he was choosing to be belligerent and disengage at work. He would swear loudly at his computer and in front of the kids.

By the fall of 2011, Allyson knew they were going to have to sell their home. The first place she lived when she moved west from Connecticut was Issaquah, so she found an apartment in town. She and the boys moved, but Evan chose to stay on the 10 acres in Fall City with their large dog.

With a background in technology as well, Allyson was looking for work, but Evan wasn’t.

“He came to the apartment every night for dinner, and we spent the weekends at the Fall City house,” she said.

At a party a short time later, he blew a gasket because he couldn’t get his boots on when they were leaving. It turned out he was trying to put on someone else’s boots that looked like his, but were much smaller. She had to calm him down, as he was making quite a scene.

At that point, in the fall of 2011, she laid out his behavior to her therapist, who recommended that they see Dr. Ileana Calinoiu. Both Evan and Allyson went to see Calinoiu who said this was not ADHD. On the list of possibilities was Pick’s disease.

“I researched it and cried and cried,” Allyson said. “I recognized it.”

A PET scan revealed the truth. There were holes in his brain. With FTD, or Pick’s, his short-term and long-term memory are fine.

“Imagine a road map but someone has erased the roads,” Allyson said.

That’s how it is. He can’t get from A to B. Now, she said, he’s like a little kid. When he speaks it’s as though he has marbles in his mouth. He can’t read books unless he’s read them before — and he can’t write, spell, do math or play computer games.

He moved into the apartment, they sold the house in Fall City and found a home to buy in Issaquah close-in so Evan can walk to parks and downtown. The home is also right across the street from a Squak Mountain trail head.

Ari and Eli didn’t go to school for weeks when the diagnosis of FTD came, but Ari is enrolled in Running Start for the fall and Eli will attend Issaquah High School.

An adult care facility is probably in the future, but right now Allyson does have a friend helping at home.

“We have amazing friends,” she said. “One takes him to lunch every Thursday, and he has a guy’s night out once a month. Evan is my hero. He is trying so hard to be a partner to me. And he is trying so hard to be the dad he knows that our boys deserve. He is very sad that he can no longer work, but he continues to do tae kwon do, he works out at the gym, he joins me for walks in the woods, and he helps to the best of his abilities with whatever projects need to be done. His disease prevents him from comprehending the ways in which he is impaired, so he feels pretty normal.”

She considers his diagnosis a blessing because she carried so much anger for so many years, but once she knew he had FTD sadness replaced the anger.

“It allowed me to go back to why I loved him in the first place,” she said.

His doctor, Soo Borsen has retired, so in the fall Evan will have a new doctor. But he is part of a study at the University of California San Francisco, and has already donated his brain to the study when he dies. Allyson and Evan will travel back to San Francisco in the fall for another PET scan, and that will tell them how much and how fast he is regressing.

“His doctor said he is a big, healthy guy so he could be around another 10-15 years, but half of that he’ll be in a vegetative state,” Allyson said.

Dr. James Leverenz with the University of Washington’s Alzheimer’s Disease Research Center told Allyson that the reason so many people are misdiagnosed is because neurologists are looking for a mass — for a tumor. An earlier correct diagnosis would have saved them both a world of frustration.

PANEL DISCUSSION

Monday, Aug. 5, from 9-11 a.m. Allyson will be part of a panel at an Alzheimer’s Association Town Hall meeting on the disease at Swedish Hospital in Issaquah.

KOMO news radio’s ConsumerMan Herb Weisbaum will moderate. The panel will highlight and solicit feedback on public policy initiatives, an Alzheimer’s disease plan for Washington state and more. Visit UWADRC.org to learn more.