In search of the face of Lou Gehrig's disease
Leo Greene, Staff Writer
Article Launched:10/08/2006 12:00:00 AM PDT


James "Snuffy" Smith of Chino was diagnosed with ALS in August of 2006.

(L.C. Greene/Staff)«12345»
Inland Valley Daily Bulletin reporter and videographer Leo Greene was diagnosed with ALS on Aug. 16, 2006. ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that attacks the motor neurons and leads to paralysis. Most of its victims die within two to five years of diagnosis.
In a monthly column and through videos available online at www.dailybulletin.com, Leo will explain his thoughts and feelings as he tackles the disease, and hopes to educate the public and bring more attention to an overlooked illness that afflicts more than 5,000 Americans each year.

Watch New ALS Videos
• People with ALS, 10/07
• Caregivers for ALS, 10/07

Special Section: Leo's Story

I was walking through a market the other day and witnessed a man with a cane lose his balance and tumble to the floor. People rushed to his aid.

I wondered at the time: Was this weak-legged man one of us?

We call ourselves PALS - people with ALS. Our numbers are small, but could be rising.

Fewer than 6,000 are diagnosed with ALS each year in the U.S.

We are also mostly invisible, with no famous ALS-afflicted poster boy to trumpet our cause.

As a journalist and newly diagnosed PALS, I set out recently to find more of my kind, to put a human face on this rare and medically baffling disease.

ALS remains "... one of the last scourges of humankind ..." not to have materially benefited from advances in medical science, according to a recent paper from the Center for Neurologic Study in San Diego.

I set out to find people and families afflicted with this scourge.

What I found instead were testaments to the human capacity for survival, for caring, and for love.


James from Chino


James "Snuffy" Smith wheeled out his front door and down a homemade ramp heading to his car.

"Trying to stay independent," said the 73-year-old retired railroad worker and Korean War veteran.

Veterans are twice as likely as other people to contract ALS.

Once in the driveway, Jim made a series of difficult maneuvers. He muscled his way from the wheelchair onto an electric scooter, which he then drove on to a lowered carrier attached to the back of his car.

Then, bracing himself against the side of the car, he stood and shuffle-stepped his way to the driver's seat.

"Here's the hand control," Jim said, demonstrating the device that allows him to accelerate and brake without using his feet.

Several times a week, Jim drives himself to the White Avenue Baptist Church in Pomona, where he oversees church maintenance. On Sabbaths, he teaches Sunday school classes.

Jim's independence will eventually be compromised, when the spreading weakness reaches his arms.

He was diagnosed with ALS in early August 2006. The final pronouncement came after two frustrating years of medical tests, trial treatments and multiple referrals.

A VA neurologist at Loma Linda delivered the final news.

"It was a shock," Jim said. "But I have strong faith in God, and he pulled me through it."


Colleen from Pasadena


The Baliozians, camped around the dining room table, listened as their animated daughter, Allison, recounted her day at school.

Colleen Baliozian has been living with ALS for most of her only child's 14 years.

"Her own doctors are amazed to see her today," said Colleen's husband, Vahe.

The 60-year-old Collen was diagnosed with ALS in 1997, nine years ago. Most PALS survive no more than three to five years after diagnosis.

Colleen's initial symptoms involved a growing weakness in her arms. "She had a hard time reaching out for dinner plates," Vahe said.

The quest for a medical answer took the Baliozians from UCLA to the Mayo Clinic in Minnesota. In 1997, the Mayo neurologist rendered the ALS diagnosis and gave Colleen five years to live.

"I was a little angry when he said that," Vahe said. "How could you give a time or date?"

As the disease progressed, Colleen gradually lost the ability to walk, to eat and to breathe on her own. However, she made the Mayo Clinic specialist eat his words.

She survives with the aid of a feeding tube and, for the past six years, a ventilator.

Despite the reliance on medical machinery, her spirit remains undaunted. Colleen looked on happily, sitting in her wheelchair at the head of the table and questioning Allison in a slightly slurred voice.

Vahe attributes his wife's continuing survival to medical devices, like the ventilator, and Colleen's positive attitude.

"She has accepted the disease and that's very important," he said. "And we're doing our very best to provide comfort."

Burdened with responsibilities, PALS caregivers also face emotionally difficult challenges.

Vahe, a religious man, attributes his strength to God and to his ongoing affection for Colleen.

"You have to have love," he said. "I loved her before and I love her now."


Nila from Colton


"I think ALS is the loneliest disease," said Nila Perkins from her room at the Reche Canyon Rehabilitation and Health Care Center in Colton.

The 53-year-old Nila had been an active woman, a longtime executive for the Girl Scouts.

In 2002, she first experienced shaking in her hands and difficulty negotiating stairs.

Nila knew something wasn't quite right. But when a doctor suggested she needed to slow down, "I was outraged," she said.

Eventually, in May 2003, a Loma Linda specialist diagnosed ALS. Nila had been living on her own in Redlands at the time.

By July 2003, she quit driving. A walker became necessary in September of that year. And by February 2004, she needed a wheelchair.

So as not to be a burden to her daughter, Nila decided in May 2005 to move to the Reche Canyon center. It was a wise decision, she said.

In her year-and-a-half at the nursing home, Nila has survived several other ALS patients. As for longevity with this disease - "It's 95 percent attitude," she said.

Her grandchildren keep her going. Nila said she wants to live long enough for the youngest, who's 3, "to remember me," she said.


Jeff from Canyon Country


Jeff and Martina Renville were planning to have a second child when the dreadful news came.

"It was devastating. I fell apart," Martina said, tears welling in her eyes.

Jeff was a relatively young 38 at the time, in January 2004.

Like other PALS, he had gone through months of testing and saw multiple doctors, trying to rule out other possibilities.

He and Martina had been an active couple - running marathons, playing golf.

Before the diagnosis, Martina recalled one evening on the way to a play, they were forced to dash across a street.

"Jeff could not run," she recalled.

Retired from his engineering career, Jeff now spends his time doting on his 3-year-old daughter Alyssa.

They play tag on the back patio, Jeff in his electric wheelchair and Alyssa on her bike.

When she's off at school, Jeff makes CDs on his computer, recording his voice, telling stories, leaving something of himself behind for Alyssa to touch and hear when he's gone.

As with other families in similar situations, ALS can be tough on everyone.

But "you don't run away from it," Martina said. "I made a commitment to him. I love him."


Scott from Cerritos


They called it their abyss.

"It was like getting hit by a Mack truck," said Scott Morris, 53, a retired high school teacher.

"I cried until there were no more tears," Scott's wife Sirima said.

The couple spoke of that March day in 2004 when a neurologist perfunctorily informed Scott he had ALS.

The couple hit an emotional bottom quickly, viewing the diagnosis as a death sentence.

A new realization gradually took over, "that I'm not dying of ALS," Scott said. "I have to go about living with ALS."

And living they are.

As parents of 10-year-old son and 6-year-old daughter, Sirima said their life is too full and busy to dwell on the negatives.

"I don't have the time," she said.

For Scott, the brief down times come when the disease seems to abruptly progress in what he called stairsteps. "It's like a jolt," he said.

The down times pass with the help of Sirima, his kids and his church.

Scott moved from a scooter to a power wheelchair in July. With his legs largely useless, the disease is beginning to drain the strength from his arms.

This disease, "gives me a deeper sense of appreciation for every bit of life you have," Scott said.

Sirima agrees. "I want to get as much life out of this as I can," she said. "To live with passion, to live with excellence, to live with this extraordinary view of life because of what we've been dealt with."


For more info:

Colleen Baliozian and Jeff Renville and their families will be among those participating in the ALS Association Greater Los Angeles Chapter's annual Walk to D'feet ALS on Sunday, Oct. 15, at USC.

For information, call Giovanna D'Angelo at (818) 865-8067, Ext. 229 or e-mail giovanna@alsala.org.

The association's Orange County Chapter will hold its annual walk Saturday, Oct. 21, at Mason Regional Park in Irvine.

For information, call Denise Greek at 714-285-1088 or e-mail dgreek@alsaoc.org.



Leo Greene can be reached by e-mail at l_greene@dailybulletin.com or by phone at (909) 483-9337.


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