July 18, 2004
By JESSICA L. ABERLE
of the Journal Star
Story and photograph by JESSICA L. ABERLE of the Journal Star

GRAND RIDGE - An ever-smiling Jeff Lane goes on and on about the good things and great people in life.

At age 29, Lane has a devoted wife, beautiful toddler, great job and a herd of caring family and friends. He also has a terminal illness and a determination to fight it through endless fund-raising and public awareness efforts.

"We got to find a cure," the Grand Ridge man said of his affliction with amyotrophic lateral sclerosis, known as Lou Gehrig's disease. "I got a little one here, and I don't want her to grow up and have to wonder what this disease is."

Lane and his wife, Debbie, were so determined not to let the disease interfere with their life plans that even after the diagnosis - which typically means death within three to five years - they fulfilled their desire to start a family.

"We decided we weren't going to let his disease change our plans in life," Debbie said.

"We were planning on having a child when she was finished with school, so we did," added Jeff, who worked as a conservation police officer and now is an over-qualified administrative assist-ant in the agency's office at Starved Rock State Park.

In recognition of his positive attitude and never-ending research, fund-raising and awareness efforts, the Les Turner ALS Foundation will honor him Tuesday in Chicago as "Patient of the Year." award.

"He is such a wonderful man, and he is fighting this terrible disease with such courage and just a strength," said Wendy Abrams, executive director of the independent not-for-profit organization. "He has to know that he's not going to win this battle, but he's not letting it keep him down."

Life goes on

Little Kristen - the sparkle in her dad's eye - is 14 months old. Jeff's official diagnosis came about 2 1/2 years ago.

Already, the muscle-wasting disease has claimed much of Jeff's use of his arms. His walking is limited. His speech, though easily understandable, is obviously slowed.

Recently, Kristen, with all the might a tiny tot can muster, tried to pull up her dad to stand and play with her outside.

"You can do it," his words encouraged. "Come on, p-u-l-l." With a little help from Mom, Dad was on his feet again. Kristen's short attention, however, already was on other things.

Jeff just smiled.

"I'll never be able to play catch with my daughter in the back yard," Jeff said. "You know, like the things dads are supposed to teach their daughters. So, I'll teach Mom, and she'll show her."

The progression of the relentless disease has failed to claim his spirit, determination or joy.

Most ALS patients are in their 50s at diagnosis. Debbie hopes her husband's youth and strength will put him among the ALS fighters living more than five, 10 or even 15 years.

The tall, thinning man wants to see Kristen graduate from high school or even get married.

"I keep a positive attitude for this little one. I have to," Jeff said while visiting with Debbie and Kristen in his office.

"I can't imagine being depressed or upset or mad or anything."

Instead Jeff, with the support of his family, focuses on informing the public about the disease that can strike anyone, at any time, with little warning. Their efforts have raised thousands of dollars for research through "The Walk 2 Defeet" and bringing busloads of people from central Illinois - especially Jeff's hometown of Tremont - to Lou Gehrig's Day at Wrigley Field. Jeff even testified before the state legislature to secure ALS as a donation check off on the state income tax form.

"I can't find a cure, but hopefully I can help raise money to help 'em find it," Jeff said. "We need to let people know that this can happen to anyone, and hopefully in the near future we can find something to slow it down or find a cure.

"It's better than sitting at home in the closet crying," Jeff said of his fighting spirit.

The diagnosis

Jeff took a job with the Illinois Department of Natural Resources' conservation police in 2000. During his police academy training, he broke his left ankle.

"It never got better," Jeff recalled. "Not like I wanted it to."

He went to an orthopedic surgeon in November 2001, who ultimately sent Jeff to a Cleveland neurologist. By January or February, Jeff got the news. Jeff told the doctor he had some previous problems using his hands in extremely cold weather. And looking back he recalled some other indicators.

The doctor said: "Jeff, you have amyotrophic lateral sclerosis."

"I said yes, so what. Give me a pill, and we'll get this fixed," Jeff remembered. "And then he goes, 'No, Jeff, you don't get it.' "

Knowing Jeff grew up playing baseball, the doctor continued: "You know who Lou Gehrig is?"

"And then my mouth hit the floor."

There is no known cure for ALS, a neuromuscular disease characterized by a progressive degeneration of motor nerve cells, that ultimately leads to total paralysis and death by respiratory failure. As ALS attacks the body, a person's mind usually remains unaffected. Some people can live considerably extended lives on a ventilator.

Jeff has decided to remain as active as possible.

"It's kind of a use-it-or-lose-it deal," Jeff said.

He takes the only Food and Drug Administration-approved ALS treatment drug - Rilutek - shown to add about six months to a person's life. He also takes other medications to treat ALS symptoms, such as constant muscle twitching. Antioxidants also have shown to offer some relief.

Jeff has the sporadic form of ALS, as no one in his family has ever had the disease. Researchers, although they have many theories, have yet to pinpoint an exact cause.

Abrams said ALS symptoms either start in the arms, legs or speech area of the body. The disease moves fastest when it starts in the speech and swallowing muscles.

"Jeff has a better prognosis because it started in his limbs," Abrams said.

Abrams said most ALS patients do not choose to survive on a ventilator because "it's invasive and permanent."

But "they can live many, many years on a respirator," she said, adding those choosing that option typically have very strong family ties and support. Jeff and Debbie aren't to that point yet, but they have made plans for the future.

'The rest of my life'

A friend donated a communication device that will talk for Jeff when he no longer can speak for himself. Someone else donated a van to help transport Jeff's wheelchair. The couple is making their home handicapped-accessible.

Jeff will continue his fund-raising efforts - even increasing them - as long as he is able. He will continue to share his story to raise awareness about the disease for "the rest of my life."

But the humble man, for all his efforts, says he's still not sure he deserves any award.

"I'm honored to receive this award," Jeff said. "I just don't know what to say about it. I don't feel like I did enough. I wish I could do more."

And so he will.

Already Jeff is helping plan an ALS golf outing in Savannah and gathering more people to head to Chicago Sept. 11 for the ALS Walk 4 Life.

The determined man, also an avid hunter, said there's more to do at home as well.

Kristen already is practicing her duck calls, Debbie said with a loving glance to her husband.

"Mom will have to teach her to hunt," Jeff said, adding he took his wife before the disease took hold.

At work, the Department of Natural Resources has equipped Jeff's computer with voice recognition, and the quick-thinking man already learned recording phone numbers is a lot easier than writing them. His knowledge of the law allows him to answer many public questions that typically would have to be forwarded to an officer.

It's for all these reasons, Abrams said, that Jeff deserves to be honored this week.

"Not only for being a wonderful person dealing with this terrible disease, but for having taken steps to put himself in the public eye. He becomes a model for other patients.

"Some people can retreat into their shell," Abrams said. "Others can come out and help and do and continue on with their lives ... and even start a family.

For information on ALS call the Les Turner Foundation at (888) 257-1107 or visit the Web site www.lesturnerals.org