By JAN JARVIS
FT. WORTH STAR-TELEGRAM STAFF WRITER

Six months ago, Wayne Strianese was a hard-driven computer guru who let little stand in his way.

Today, as he sits in his wheelchair, unable to lift his arms or breathe without assistance, Strianese can't help but be mad.

Mad that he will never be a grandfather or see his 10-year-old son grow up. Furious that at 40, his body has turned on him and robbed him of the rest of his life. Frustrated that the bureaucracy makes it so difficult to get the equipment or help he needs.

Most of all, he is angry that he is the 26th person in his family to be diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The fatal neurological disease has rampaged through his family, killing cousins, aunts and his mother.

"I'm mad that I had to be the next one," he said.

Yet amid the frustration Strianese has found a reason to be grateful.

Adam Clark, a volunteer with Extra Hands for ALS, has started visiting the family each week, doing the things that Strianese can no longer do himself. During a recent visit, Clark mowed the yard, trimmed the bushes and strung Christmas lights at the family's home in Burleson.

The Strianeses appreciate the help.

"Adam is a good guy with the right attitude," Wayne Strianese said. "It's nice to see young people take their spare time to do something like this."

Extra Hands for ALS was founded in 2002 by Jack Orchard, who was diagnosed with the disease when he was 34. The organization matches high school and college students with families dealing with ALS. Volunteers agree to spend two hours a week with the family throughout the school year. A mentor also works with the volunteers, who perform tasks ranging from cleaning house to shopping for groceries.

The group started in St. Louis and has spread to cities across the country. In May, Linda Allen of Arlington became program manager for the Dallas-Fort Worth area. She decided to start the area organization after her husband died in 2002.

Since then, about 50 students have volunteered to help 14 area families, including the Strianeses. Although the families benefit from the extra help, the hope is that the students will also gain from the experience, Allen said.

"Families are allowing them to come into their home, where they learn about being compassionate and being empathetic," she said. "They learn firsthand what it is like to live with a terminal illness."

Watching someone who was once active and full of life deteriorate is painful for caregivers, said Allen, who cared for her husband during his illness.

"You don't have time to get angry during the process because you're so busy doing things," she said. "What the family goes through is so horrific."

The Strianeses said they appreciate Clark's help and see benefits beyond what he has done around their house.

"I'm hoping he will inspire my kids to help others," said Cara Strianese, who quit her job to be her husband's full-time caregiver.

Clark, a student at the University of Texas at Arlington, said he has learned a lot from the Strianeses.

"It was a shock to me when I learned how fast this disease travels," he said.

Although people with ALS typically live three to five years, Strianese has an aggressive form. Most of his relatives who were afflicted died within 13 months. His cousin, who died in May, lived the longest at 15 months.

The disease has progressed so fast in Strianese that the family has hardly had time to plan for his equipment needs or to fight for insurance coverage.

While working out at the gym this summer, Strianese tore a calf muscle. The weakness in his leg worsened, as did his fear that he would meet the same fate as others in his family.

By late July, he was unable to walk without a cane. A neurologist confirmed what he already suspected. By September, he needed a wheelchair. Two weeks ago, he lost the use of his arms.

"He can control his wheelchair, but he can't raise his arm to scratch his nose," Cara Strianese said.

The disease tends to reach a plateau and slow down, but then speed up again, she said. He is already having difficulty breathing without help. Later, Strianese said, he will be unable to speak. He has started using a computer that recognizes eye movement.

"This is a bad disease because it does not affect your mind," he said, "I'm still the same person I was before I was sick. I still dream at night, and when I do I'm walking and doing all the things I used to do."

ONLINE: www.extrahands.org

IN THE KNOW

Extra Hands for ALS

Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is a fatal neurological disorder that causes muscle weakness, wasting and paralysis. About 5,600 people in the United States are diagnosed with ALS each year. Life expectancy is three to five years. Extra Hands for ALS helps people with the illness and introduces young people to community service.

Student volunteers are trained and matched with an adult mentor and an ALS family.

Volunteers visit their ALS family once a week during the school year.

Volunteers help with tasks such as mowing, cleaning or shopping.

For more information, go to www.extrahands.org or call Linda Allen at (817) 521-6290.