DESPITE DEBILITATING ILLS, FAN DRIVEN TO REACH GAME

Editor’s note: This is the fourth in a series of stories on the “Road to Natty.”

GLENDALE, Ariz. — Of the thousands of Duck fans who have made their way here for Monday’s BCS National Championship game against No. 1-ranked Auburn, perhaps none of them can match Paul Speck’s story of determination and perseverance to do just that: get here.

An avid University of Oregon football fan since he came to Eugene in 1968 to attend law school, Speck, now a retired attorney who lives in Bend, arrived here Saturday with his wife, Rose. She drove them from Bend. For many, a four-day, 1,200-mile drive would not be that much of an issue. But for someone with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease, traveling long distances is not easy; nothing is easy.

Easy was life before ALS.

Paul Speck, whose son Mark Speck is one of eight student managers for the UO football team, gets around now by operating a power wheelchair. He and Rose could have flown here, but he wouldn’t have been able to take the wheelchair, or other equipment he needs, so that wasn’t really an option.

Neither was riding shotgun in their Chevy Suburban, although it almost came to that before they departed Bend on Wednesday. The converted Toyota Sienna minivan they bought last month at MPJ Mobility in Springfield, a company that builds custom-made vans for those with disabilities, had some mechanical issues. But that was taken care of at a Toyota dealership in Bend, and the Specks were able to make it to MPJ Mobility to have a wheel lock installed so Paul could drive his wheelchair up the van’s ramp and park it where the van’s passenger seat would normally be, snapping it into the wheel lock for the drive here.

“I think it might be one of our last major trips,” Rose said on Thursday afternoon, during a stop for gas off Highway 99 in Ripon, Calif., just south of Stockton.

She knows, given that ALS is terminal and the average lifespan after diagnosis is two to five years, that this might not only be their last major trip together, it might be the last Duck football game Paul ever sees. And given that it’s the national championship game, and Mark Speck’s last game with the Ducks, there’s no way they were going to miss it.

Just three weeks ago, Paul, 65, spent all day in the emergency room of a Bend hospital, hoping he would live to see the next day. He couldn’t shake a cold. Couldn’t breathe.

“He just couldn’t fight it off,” said Rose, a physical therapist who has taken a month of family leave to take the couple on this journey, which will include a postgame trip to San Diego for her parents’ 64th wedding anniversary. “I just prayed that he’d be able to go on this (trip).”

Paul Speck survived that day in the hospital, aided by oxygen treatments and steroids.

Ducks a welcome distraction

ALS is also known as Lou Gehrig’s disease because of the New York Yankees baseball great who died from the disease in 1939 — but not before he brought worldwide attention to the debilitating illness. ALS results in degeneration of nerve cells in the central nervous system that control voluntary muscle movement.

About 5,600 new cases occur in the United States annually, and an estimated 30,000 Americans are living with it at any given time, 60 percent of them men, 93 percent of them white, according to the ALS Association.

The only known cause of ALS is mutation of a specific gene: SOD1 gene, according to association’s website. But the mutation, which is believed to make a defective protein that is toxic to motor nerve cells, only accounts for 1 percent or 2 percent of all cases and 20 percent of inherited cases.

Inherited cases represent 5 percent to 10 percent of all ALS cases, according to the ALS Association.

Although he was diagnosed less than two years ago, Paul Speck knew that the weakness he began to feel in his knees five years ago, and the atrophy in his legs, was probably the beginnings of ALS.

“I just had a lot of cramps in my legs and fasticulations (muscle twitches),” Paul said.

But he also knew his family’s history.

His mother, Dorothy Speck, died of ALS in 1972 in Davis, Calif., where Paul grew up. She was only 52.

In 2007, his younger brother, Larry Speck, died of ALS in Stockton at 60. And now, his younger sister, Cathy Speck of Davis, 50, has been diagnosed with the disease, too.

“I did OK for a long time, but lately I’ve been getting a lot weaker, which is frustrating,” Paul Speck said.

“Our new ‘F’ word is frustration,” Rose said.

Through the frustration and aggravation and just plain emotionally difficult work, the Specks have been able to lose themselves, as much as possible, during the last four months thanks to the greatest Oregon football season ever.

“We haven’t lost this year, so he’s always felt good on Saturdays,” said Mark Speck, 22, a backup punter for the Ducks in 2008 before becoming a manager on full scholarship for the 2009 season.

Paul and Rose didn’t miss a single UO home game this season, using the tickets allocated to Mark for all six of those games at Autzen Stadium, from the opening 72-0 rout of New Mexico on Sept. 4, to the 52-31 come-from-behind win over Stanford on Oct. 2, to the 60-13 blowout of UCLA and all the rest.

And the bond between father and son has been strengthened despite the increasing weakness in the father’s nerves and muscles and voice.

“It’s gone outside (being) just a game,” Mark said. “It reaches outside of that. It’s not just sports, it can reach across boundaries.”

As he does for every UO game he attends, Paul Speck will send his son a text message before kickoff of Monday’s game, letting him know where in University of Phoenix Stadium his wheelchair is parked. And Mark will look up and wave. And his father will wave back.

“Just really, really proud, I guess,” Mark said, when asked about his father’s determination to be here this weekend. “Just between he and I, and the success of the season, it’s just been great. I get to look up and see him. To know that he’s healthy enough to get to a game. He’s still here.”

A football-loving family

Mark remembers 1995, when he was 7, as being the first season his father began driving them from Bend for Duck football games in Eugene.

Paul remembers that first game as the time his son noticed there weren’t just football players on the field at Autzen.

“You know, Dad, I figured out that there are good cheerleaders and bad cheerleaders,” he remembers Mark saying.

Football has always been a part of the Specks’ lives. Passed on from father to son to son’s son. Gene Speck, Paul’s father, now 88 and living in Anderson, Calif., could kick a football so well he almost made the team at the University of California at Berkeley in the 1940s. Paul remembers his dad booming punts of 50 or 60 yards as kids watched in the streets of Davis.

Paul made the roster as a running back at the University of San Francisco in the mid-1960s, then transferred to the University of California at Davis, where he played offensive end and kicker.

As for Mark, “He started kicking after he could walk,” Paul recalled. “He was a natural athlete.”

Such a natural athlete that he rushed for 1,799 yards as a senior for Bend High School in 2006, making first team all-league in the Intermountain Conference.

Mark Speck went to Northern Arizona University in 2007 and made the football team as a punter. He had opportunities to play running back at small colleges, but decided not to because of five concussions he sustained in high school, three playing football, one playing basketball, and one falling out of a golf cart.

NAU didn’t seem like a good fit, however, so he transferred to Oregon in the middle of his freshman year. He walked on to the football team and made it as a backup punter in 2008. But playing time was difficult to come by, and when the opportunity arose for a full scholarship as a manager in 2009, he took it.

“It was a good move for me,” said Mark, whose high school buddy, Cody Knight, accompanied the Specks on their road trip to Glendale to assist Paul. “My main goal was to earn a scholarship for school.”

He has a 3.5 grade-point average in political science and is considering following in his father’s footsteps and applying for law school. Either that, or possibly a career in education.

He is the only child of Paul and Rose, who each have three children from previous marriages. Two of their sons, Joe and Peter, and their wives, along with a grandchild, are here with them for the championship game.

“It means the world to me,” Rose said, of making this journey with Paul, her voice catching, the tears welling. “It’s just a horrible disease.”

Despite Paul’s family history with ALS, Rose just didn’t see it happening to her husband. When he passed the age at which Paul’s mother died of the disease, 52, “I just thought he wasn’t going to get this,” Rose said.

“It never dawned on me that he would get this disease. I still don’t believe it sometimes.”

Paul was so active, Rose said. He ran and biked, skied and fished. In fact, he even fished the Deschutes this past summer with a group of friends.

“It wasn’t easy, but I did it,” Paul said. He used crutches, and his friends carried him part of the way. “Or I crawled — literally,” said Paul, who is writing a novel about a steelhead named Solomon.

The story follows Solomon from his birth in the Deschutes, to his struggles through dams on the Columbia on his way to the Pacific, and back to the Deschutes. Along the way, he is caught by four different fishermen, who all return him to the waters, gathering strength and knowledge from observing the fish’s struggle.

The novel’s main human character has ALS, Paul said.

“It’s basically about life,” he said of the book.

Asked why he made this journey, rather than just staying home in Bend and watching the game on TV, Paul said: “Because it’s part of life. It’s something to look forward to. Hell, I’m not the only guy in the world who’s got issues. I’m trying to live until I die.”