A team for life

Ellen McCarty

FOUNTAIN VALLEY -- The Futagaki brothers gripped each other’s shoulders

in support as they thanked the 400 people who gathered Saturday at the

Costa Mesa Community Center to raise more than $20,000 for their dad’s

in-home nursing care.

“I want to thank my mom for showing me what commitment is all about,”

said Brent Futagaki, 23. “And my dad, for showing me the determination

and will to live.”

For the last six years, Arnie Futagaki has battled Amyotrophic Lateral

Sclerosis, better known as Lou Gehrig’s disease.

Although his disease has slowly debilitated his muscles and stolen his

ability to speak, 51-year-old Arnie Futagaki continues to be “a quiet

inspiration” to his former Golden West College football teammates, who

reunited after three decades to organize the fund-raiser for the man who

was once their captain and coach.

“I love the man,” Steve Cashdollar, a former running back, said as he

served drinks. “I knew him only four months, but I’ve mentioned his name

about five times a year, every year, since then because that’s what I

think of him.”

Humble. Tough. Courageous. Dependable. Futagaki was a rock, said Steve

Farmer, also a former running back, who like many of his teammates, read

about Futagaki’s disease in a local newspaper earlier this year and

decided to do something about it.

Seeing Futagaki, once a powerful athlete but now robbed of speech and

movement, forced his friends to “stop and realize how lucky we are to

have each other,” said Doug Pricer, a former lineman.

“Everyone on this team has cried about Arnie,” he added. “If they say

they haven’t, they’re lying.”

Futagaki cries, too, to show his appreciation for his friends and loved

ones, said his wife, Shirley.

At their Fountain Valley home on Friday, Shirley made a sign that

expressed her husband’s feelings. It read: “These are tears of joy, for I

am overwhelmed by everyone’s kindness.”

“I can basically understand most of what he wants, but I don’t understand

all,” Shirley said as she shaved Arnie’s face Friday in preparation for

Saturday’s event. “It’s frustrating, and sometimes I just talk to him and

tell him my worries.”

The family is not alone.

Futagaki is one of about 100 Lou Gehrig’s patients in Orange County and

about 5,000 in the United States, said Cheryl Holt, executive director of

the Amyotrophic Lateral Sclerosis Assn.

The organization provides counseling, medical equipment and limited

support for families battling the physical and emotional impacts of the

disease.

“I’m overwhelmed by the dedication of caregivers,” she said. “I don’t

know how they get up in the morning.”

At Saturday’s event, Shirley told the crowd that she leans on the lord.

“I have lived each day by a step of faith,” she said. “God has used each

of you to carry us through this season of our lives.”

No one knows when his life is going to end, said Dr. Andrew Schreiber, a

neurologist at Fountain Valley Regional Medical Center. “He may feel like

he’s dying, but he may live for another 10 years.”

Lou Gehrig’s disease, named after a famous New York Yankees baseball

player who died of the disease in 1941, is only 5% genetic -- the

remaining causes are unknown, as are the physical manifestations of the

disease. Every case is unique, Holt said.

Futagaki’s bond with the football team began in a sugar beet warehouse in

1966, the year Golden West College opened.

There was no practice field. And the team was “undersized, slow and

outrageous,” said Duane Cruzat. But the Golden West Rustlers won five of

their eight games. Now they hope to help Futagaki, once again, beat the

odds.

Twenty-seven years ago, Shirley vowed to support her husband “in sickness

and in health, till death do us part.” She repeated those vows at

Saturday’s fund-raiser. When she stepped down from the podium, where

friends shared stories about her husband, 400 people rose to give her a

standing ovation.

The peace of ‘goodbye’

Dee Jones knows how hard -- emotionally and physically -- it can be

caring for a loved one suffering from Lou Gehrig’s disease.

Jones, a volunteer for the Amyotrophic Lateral Sclerosis Assn., runs a

county patient hotline from her home in Westminster. Her husband died of

Lou Gehrig’s disease seven years ago, after deciding not to use a

ventilator when his lungs stopped functioning. She said it would have

prolonged his life, and his suffering, indefinitely.

Now she helps caregivers cope with burnout.

“It’s very hard to stay ahead of the disease,” she said. “One week, a

cane would work, and the next week, his hand couldn’t hold a cane. You

think you’ve solved a problem, and then that muscle doesn’t work any

more, and you have a new problem.’

Unlike paralysis, in which a patient loses feeling, Lou Gehrig’s stops

the muscles from working, but not the nerves, she said.

“You’ll have an itch and not be able to scratch.”

The patient’s mind remains sharp and alert, but he becomes imprisoned by

the body as it shuts down.

As the disease quickly progressed, Jones said she became scared. Her

husband died within a year.

“I thought, ‘How will I know what to do?’ It’s very difficult to respect

their wishes and do nothing, to just be with them while they die,” Jones

said.

As it turned out, death was “a peaceful, beautiful goodbye,” she

remembered. “There’s a closeness you can’t even describe.”

For Amyotrophic Lateral Sclerosis information:

* Amyotrophic Lateral Sclerosis Assn. (ALSA); (949) 442-0755

* Patients with Amyotrophic Lateral Sclerosis (PALS); (714) 375-1922

* Volunteers for PALS; (714) 375-1922

FYI

Here are some symptoms of Amyotrophic Lateral Sclerosis.

* Difficulty swallowing

* Tripping

* Slurred speech

* Dropping things

* Physical exhaustion

VOICES

“Everyone on this team has cried about Arnie. If they say they haven’t,

they’re lying.”

-- Doug Pricer, former teammate and Golden West College football lineman.

“I told you when I met you that we’d be great friends because I love to

talk, and you’re a great listener. In reality, you’ve shown me what’s

important in life.”

-- Gennyne Walker, wife of former teammate Alec Walker and president of

Friends of the Futagakis Foundation.

“It’s harder to give than it is to receive. We were always givers, and

it’s been so humbling to receive so much support, especially from people

who don’t even know us.”

-- Shirley Futagaki

“When you’re a caregiver, you turn your life over to the patient.”

-- Dee Jones, ALS patient hotline volunteer whose husband died of the

disease.

“Arnie was the kind of person that, if you gave him a compliment, he’d

play it down.”

-- Steve Cashdollar, former teammate

“The only thing good about this is that it’s brought all of us together

and given us a chance to take care of our own.”

-- Wayne Hall, former teammate

“I’ll make some comment about a practice, and Arnie will open his mouth

and close his eyes, and I know he recognizes what I’m saying.”

-- Dan Cunningham, former teammate