Hoarder Buried Himself in Atari Games and Bobble Heads

New treatments help those who risk their safety and lose loved ones to clutter.

April 27, 2012, 6:32 AM

April 27, 2012— -- Lee Shuer's hoarding began a decade ago as he began collecting Atari video games then progressed to vintage art work and musical instruments.

But soon, his apartment was overflowing with bobble heads, collectibles and anything he could get "free or a good deal."

"It got to the point where more is better," said Shuer, now 37, of Easthampton, Mass. "Eventually, they spilled off the shelves, onto the floor, down the hall, into the bedroom, off the bed -- you could see the tide flow."

Shuer's acquisitions became part of his identity and self-esteem.

"If I had more fun and more toys, people might actually like me," he said. "If I had enough things to play with, they might come hang out."

When he finally met his future wife and they had to clean out the clutter to move in to a new home, she was horrified by the volume of things and begged him to call for help.

Shuer did, and this week he is one of the key presenters at the 14th Annual Hoarding and Cluttering Conference, sponsored by the San Francisco Mental Health Association. There, both clinicians and hoarders will attend an array of workshops on best practices and new treatments.

"I give my wife a lot of credit," he told ABCNews.com. "If it wasn't for her, I wouldn't be talking to you now."

After participating in a study at Smith College in 2005 with pioneering hoarding expert Randy O. Frost, Shuer joined a hoarding task force and began to help others.

"Hoarding has been around a long time, all the way back to the 14th century," said Frost, psychology professor and co-author of the 2011 book, "Stuff: Compulsive Hoarding and the Meaning of Things."

In one of the most famous cases in the 1940s, the Collyer brothers were found dead in their New York City apartment under 100 tons of trash, including human pickled organs, the chassis of an old Model T, 14 pianos, hundreds of yards of unused silks and fabric, the folding top of a horse-drawn carriage, and more than 25,000 books.

Frost identified the three features of hoarding: excessive acquisition, difficulty discarding and disorganization. He developed the "Buried in Treasures" self-help program that gave Shuer his life back.

Compulsive hoarding is strongly associated with obsessive compulsive disorder (OCD), a condition that affects about 4 million Americans, according to the OCD Foundation. About 25 to 40 percent of those with OCD have hoarding symptoms.

Psychiatrists are now hopeful that hoarding will get its own category in the Diagnostic and Statistical Manual of Mental Disorders V this year, distinguishing it from obsessive-compulsive disorder.

Hoarding can lead to serious health or safety dangers and threaten relationships with family and friends.

The disorder is diagnosed when a person experiences significant distress and/or impairment as a result of their hoarding.

Homes on television shows like TLC's "Hoarding: Buried Alive" can have infestations of rodents or insects. Hoarders are unable to entertain guests, prepare food or find their possessions.

"It's difficult to actually get an estimate of how many people are hoarders," said Julie L. Pike, who has appeared on the show and is a psychologist at the Anxiety Disorder Treatment Center in North Carolina.

"There is so much shame and so much hiding around it," she said.

Often hoarders do not seek help until it is too late -- when they have lost their children, their home or a spouse.

In one of the most serious cases of hoarding on the reality show, Pike helped a woman whose home was infested with a nest of black widow spiders and cockroaches. Uncapped insulin needles and dirty incontinence pads were strewn everywhere.

"The exterminator said it was the worst infestation he'd seen in 23 years," said Pike.

Hoarding Can Happen at Home, Work or in Car

Hoarders are unable to invite guests to the home or prepare a meal and cannot find their most important possessions because of the clutter.

Hoarding isn't just a problem in the home, it can happen in an office workspace or in cars.

Research from the OCD Foundation reveals that 80 percent of all hoarders have a first-degree relative with the disorder. It can often be triggered by a loss or trauma.

"Sometimes if the parent is a hoarder, it's being modeled directly [by the child,]" said Pike.

Some research has shown an association with the disorder on chromosome 14. "There's a strong genetic link," said Catherine R. Ayers, program director for the Anxiety Disorders Clinic in the VA San Diego Healthcare System.

Researchers like Ayers have found that hoarders have deficits in the executive function area of their brains and have trouble planning, organizing and categorizing.

"Typically, hoarding is resistant to treatment, but we are making headway in intervention," said Ayers, who did a training workshop for clinicians at the conference. "It's a hopeful message."

For most hoarders, cognitive behavior therapy is most effective. In older adults rehabilitation therapy works best. In some studies antidepressant medications are showing promise in conjunction with behavioral and exposure therapy.

"The purpose is for them to learn how to make choices and to tolerate distress in letting go," said Ayers.

Lee Shuer found it agonizing to give up the objects he thought he loved.

In the Smith College study, he had to choose one object to let go. For him it was a "tacky butterfly collar polyester shirt," one he had worn at one of the first shows he played as a musician.

"I thought I could never part with it," he said. "I had to keep track of how I felt about it -- and then come back after a week and talk about it."

At first it was painful to think about giving the shirt to Goodwill, he said. "Then, I started to feel better, and after a couple of days, I was happy I let it go. It totally surprised me and I thought, 'What else can I let go?'"

Today Shuer is director of mutual support services at the mental health agency ServiceNet and runs support groups for hoarders -- "Unburied From Treasures." He continues to serve on a national task force and participates in grant writing for more research.

"All those years, I never imagined not living under this stuff," he said. "Now I can start to see that change is possible."

Now, Shuer confines his collectibles to an 8- by 10-foot room.

"I am enjoying having company over again," he said. "And I actually sold so many of the things I collected that I have the shelf space to display my favorite things."

"In the last six months, it's sparkling -- like a little museum," said Shuer. "I built shelves all around the table where I can do my writing and my art. It's fun, functional and funky. It reflects me and who I want to be."

For more information or help go to the OCD Foundation.

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