NJ family helps those with OCD through foundation

From The Star-Ledger in N.J.:

Ina and Julian Spero (pictured) had always believed their son was a happy, well-adjusted kid.

They discovered otherwise in 1985 when he called home from college in Florida, panicked over flunking a math exam. He said he wanted to come home but was afraid to leave his dorm room.

He begged his parents to come get him.

"We drove overnight, nonstop other than to change drivers. I was very worried," Julian Spero said.

They eventually learned — through much trial and error with therapists and medication — that their son suffered from obsessive compulsive disorder, a mental illness characterized by paralyzing rituals and tormenting thoughts. Back then, however, there were few professionals who knew how to treat the mental illness, and no support services for families.

That’s when the Speros, residents of Franklin Township, Somerset County, and longtime owners of a furniture store on Staten Island, began assembling what would become a New Jersey affiliate of the National Obsessive Compulsive Foundation.

"People didn’t know where to turn and who to talk to. We felt like we could help them," said Ina Spero, 76, president of the foundation’s state group, which began in 1998. Her husband, 81, is board secretary.

The Speros’ son, whose name they declined to disclose, received treatment and was able to return to school the following semester and graduated from the University of Florida in 1986.

After they got treatment for their son, the Speros went to work to help others.

The couple turned their home telephone number into a "help-line," answering calls day and night and referring people to experienced mental health professionals. They also began publishing a newsletter that now has 1,500 subscribers. Today, their support group meets at Robert Wood Johnson University Hospital in New Brunswick and has spawned at least 16 others around the state.

The Speros also run an annual conference that draws families and mental health professionals from across the U.S. and Canada. Before a gathering of more than 125 people who attended the conference in the fall, the Speros were honored for their extraordinary volunteer efforts.
Phillip Lubitz, advocacy director for the New Jersey chapter of National Alliance for Mental Illness, said the accolades are well-deserved.

"The Speros are an incredibly committed couple who have dedicated themselves to raising public awareness about obsessive compulsive disorder," Lubitz said. "They have given comfort and direction to hundreds of people dealing with OCD throughout the state."

OCD is an anxiety disorder characterized by repetitive rituals like incessant hand-washing, performed with the hope the behaviors will keep away distressing and obsessive thoughts, according to the National Institute of Mental Health. Roughly 2.2 million people in the country are affected by the illness, which often arises in childhood and runs in families. Medication and therapy can help manage the illness.

The Speros launched their homegrown network at a time when mental illness in general and OCD in particular were largely misunderstood, said Allen Weg, the affiliate’s vice president and an East Brunswick psychologist who specializes in treating OCD.

Since then, obsessive compulsive disorder has gotten the Hollywood treatment, from the 1997 Oscar-winning movie "As Good as it Gets," featuring a cantankerous bestselling author, to "Monk," the popular cable TV series about a brilliant but tormented detective. On the A&E Network, "Obsessed," follows the lives of OCD sufferers and therapists "working pretty effectively with real-life stuff," Weg said.

"There is a heightened awareness of this disorder, and I think people in general are intrigued, as I was," Weg said. "It looks completely bizarre and weird and crazy. But people recognize a little bit of themselves in OCD symptoms, like the strange worries and superstitious things."

People with OCD are beyond being neat-freaks, Weg said, noting for example that those affect can take 2½-hour showers.

"This is a painful and debilitating disorder," he said.

The Speros said they appreciate the media attention the illness has received.

"I think the show is positive," she said of "Monk," which just completed its eighth and final season. "It shows how bright he is — he can solve things others can’t. He can live his life.’’

Weg praised the Speros for their "positive energy" and knowing how to reach so many people in need of help. "They have legitimacy and power because Ina and her husband have lived it and watched people struggle with this," he said.

So familiar are they with the illness that Ina Spero knows, for instance, that when she brings out the food at a support group meeting, she must wear medical gloves so those with issues surrounding cleanliness feel more comfortable.

She also knows how to soothe parents reluctant or afraid to allow their children to take medication.

"Nobody wants their children to be on medication, but they have to have confidence in the psychiatrist, and they have to give it time," she said.

Despite their hard work, the Speros have recently decided to scale back a bit. They limited the hours of their self-run help-line to 9 a.m. to 9 p.m., just so they can ensure an uninterrupted night’s sleep.

But, they said, they have no plans to retire.

"We’ll always make the time," Julian Spero said.

The OCD help-line telephone number is (732) 828-0099 and its web address is www.njocf.org.