Despite an illness that has paralyzed Patrick Valenti, his family's enduring love and use of medical technology are ...

Speaking volumes

UNABLE TO MOVE or speak, Patrick Valenti generates a "voice" via a unique device to tell his 4-year-old daughter, Kryn, "You look beautiful today."

"He always says that," the child explains.

Valenti, 50, was diagnosed three years ago with amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease. He was a founder and chief executive officer of Valenti Brothers Graphics & Printing until his illness left him paralyzed.

Valenti uses a Dynavox DV4 with a speech augmentor connected to a computer, enabling him to communicate by voice or writing. He can't move his arms, so instead of pressing a touch screen to operate the DV4, he uses a technique known as "head mousing."

A reflective target the size of a paper hole punch is taped on his nose and tracked by an infrared camera on the DV4.

"A gentle movement of the nose moves the cursor, like a mouse. He can type in what he wants to say," said his wife, Mary Valenti.

The device will be exhibited, along with many other assistive technology products, at the Tools for Life 2006 Expo Friday and Saturday.

If Patrick wants a certain item on the screen, he holds the pointer on it and the system selects it for him. He can operate the lights, television, air conditioner and DVD in his room.

"He can preset the TV to do what he wants to watch and it will come up," said Jessica Smith, a family friend helping with his care. "He's not totally independent, but he's pretty good. The box does everything."

The DV4 buttons can be programmed to speak full phrases or to assemble letters and words into messages. "It's very, very user friendly with all the variables," Mary said. "We don't have to do any programming unless he wants to say things that are repetitious like, for the kids, to go to bed."

After Valenti became paralyzed, his partner, Scott O'Brien, ran the company until O'Brien's death last year of a heart attack. The 48 employees then took over the company, with Mary Valenti and O'Brien's wife, Valery, serving as directors. Board meetings are held at the Valentis' Aina Haina home, where Mary cares for her bedridden husband with help from friends, a nursing agency and technology.

The Valentis have a son, Kellian, who will be 13 on June 22. They were preparing to adopt a baby girl from China in 2001 but paperwork was stopped after the Sept. 11 terrorist attacks.

Patrick began having a sharp pain deep in his back in February 2003 and doctors thought it was a pinched nerve, Mary said. The couple refiled for the adoption but thought it wasn't going to happen and went on a cruise to Europe, she said.

His condition worsened, and he was diagnosed with ALS in August 2003 at the Pacific Medical Center in San Francisco. His pains were getting worse when they were notified the baby was ready for adoption, she said.

They decided to go ahead with it. Mary and her sister went to China in October 2003 and returned with Kryn.

"She kisses him, sings to him and dances hula for him," Mary said. "She makes daddy laugh."

His health disintegrated fast, she said. "The thing is, it (the disease) doesn't affect his mind at all. But hearing is sometimes a problem -- huh, Patrick?" she said with a laugh, teasing him.

"He is stuck inside his body. Everything has to be done for him. ... The hardest thing is the financial cost," she said, estimating it costs about $120,000 a year for nursing help. Some of it is covered by HMSA, she said. "We're not in debt."

Patrick cannot go to a doctor except by ambulance, so Dr. Daniel Davis Jr. has been making "house calls" for the past year through a video system he developed, Mary said. Besides his internal medicine practice, he is chief executive officer of Interactive Care Technologies.

A Dynavox representative from San Diego visits the Valentis once or twice a year to check out the DV4 system, but they haven't had any problems with it, Mary said.

"I work files like Windows," Patrick wrote on the screen.

At their company's board meetings, members "shoot off questions and he types in responses," Mary said. He is active in making decisions, she said.

Patrick was active until his illness, doing a lot of fishing and coaching their son's baseball team for three years, Mary said. They also traveled extensively.

Now, she said, "Our main goal is to keep him comfortable and keep him with the family." And like any normal family, "he gets yelled at," she said.

"And he yells at us," Rodrigues said, noting he can project different voices, from sexy to stern tones. Once he used a girl's voice, she said. "It really freaked us out."

Tools for Life The Dynavox "DV4" is one of many assistive technology products that will be exhibited at the Tools for Life 2006 Expo from noon to 6 p.m. Friday and 8 a.m. to 3 p.m. Saturday at the Hawaii Convention Center. The event is free and open to the public.