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Dream lives despite disease (USA TODAY) ...As symptoms progressed, he worried his problem might be a brain tumor.... - Mar 26 6:19 AM ET



Website: http://story.news.yahoo.com/news?tmpl=story&u=/usatoday/20020326/sp_usatoday/3969415

Posted on: 03/27/2002

Tue Mar 26, 6:19 AM ET

Harry Blauvelt USA TODAY

BRANSON, Mo. -- Golfer Jeff Julian sits at the kitchen table in his red brick house, watching a clear liquid drip into his arm from an IV bag hanging on an overhead light. It's treatment for the deadly disease attacking his body.

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Julian's yellow Labrador retrievers, Max and Peyton, race through the house vying for attention while the journeyman pro discusses his battle for survival.

He finds refuge on the course. He feels normal there.

"I want to play golf as well as I can for as long as I can," says Julian, who will tee it up in the PGA Tour's BellSouth Classic starting April 4. "I can still play good for stretches."

Julian, 40, is stricken with amyotrophic lateral sclerosis, or Lou Gehrig's disease (news - web sites), named for the Yankees Hall of Fame first baseman who died from ALS in 1941. Julian was diagnosed with the fatal neurodegenerative disease Oct. 8 at Johns Hopkins in Baltimore. There is no cure.

"I feel lucky," says Julian, whose speech is slurred by the disease affecting muscles in his tongue, jaw and neck. "I envision good things from this. I enjoy every day more. We have bad days, sure, but you see the good in people."

Julian has to pace himself. If he overexerts, his muscles can fatigue, and sometimes they'll twitch.

On the golf course, he tires more easily at the end of rounds and the conclusion of tournaments. He's not as strong coming out of the rough. He has an endorsement deal with Callaway, which made him clubs with lighter shafts.

"I can hit a ball as far as ever," he says. "But I can't pound balls and hit and hit. I get arm weary. I'm just trying to stay within myself."

Julian attracted national attention when he played the AT&T Pebble Beach National Pro-Am (news - web sites) in February on a sponsor's exemption.

Pard Erdman, a cattle rancher and oilman who lives on Maui, was Julian's amateur playing partner at Pebble Beach. Erdman asked to play with Julian. "He wanted to be treated just as a golfer," Erdman recalls. "He knew I knew, but we talked about golf, not ALS. You take away a real appreciation for how lucky you are getting to know someone like Jeff."

When they didn't make the cut, Erdman invited Julian to play storied Cypress Point. Says Erdman: "You realize how important it is to play it as a game and play the shots as they come and take what life gives you."

Julian's caddie that week was longtime pal Scott Peters of Hanover, N.H. "You can't help but be moved," Peters says. "Jeff has been courageous in coping with the hand dealt."

Julian has three exemptions in April, BellSouth, WorldCom Classic and Greater Greensboro Chrysler Classic, and one in June, the Canon Greater Hartford Open.

"You don't know how many more chances Jeff is going to have," Greater Greensboro director Mark Brazil says. "We can all learn something from the way he's conducting his life."

Julian can accept up to two more Tour exemptions in 2002. It's not difficult to tell when he gets one: It's like a shot of adrenaline. "Jeffrey can't speak when he gets emotional," says his wife, Kimberly, 31. "When I see him coming with the phone, I know it's something good."

Playing for the card

Julian has two full PGA Tour seasons to his credit. He didn't earn enough money either year to keep his playing card. In 2001, he earned $55,132 to rank 211th on the money list. In 1996, he earned $55,602 (193rd).

He talks about going back to Qualifying School to try and earn his PGA Tour playing card for 2003, "Unless we win a few. I need to get my butt in gear and avoid Q School with these chances I have. My game feels good."

His résumé includes the Nike Tour, where he won the 1997 Dominion Open. He's played the Buy.com Tour. He's been an assistant pro, anything to stay in golf. He helped support himself as a bartender in the '80s.

"I was great," he says. Quips Kimberly, "Like Tom Cruise in Cocktail, right?"

The two hold hands, touch and kiss constantly, underscoring this isn't only a battle for survival, it's an uplifting love story.

They met Aug. 12, 2000, at a party in Springfield, Mo., the Saturday of the Ozarks Open, a Buy.com Tour event. Julian learned that day his mother had died of a heart attack. He couldn't get a flight to the family home in Norwich, Vt., until the next day. So he went to the party.

"It was instant attraction," she says. "I had my guard up, but it was hard to resist him."

They got engaged Oct. 27, 2000, in Norwich. Jeff proposed in the hayloft of the barn at the family farm. They had wine, cheese and a spectacular sunset as backdrop. "It was a proposal every girl dreams of," Kimberly says.

That November, as they stood beside a waterfall near her hometown of Branson, Kimberly gave Jeff a ring engraved in Hebrew: "I am to my beloved as my beloved is to me."

They were married Feb. 15, 2001, by a justice of the peace beside his mother's grave.

Getting on with life

Each has a young son from a previous marriage. Kim's is Tyler, 9, who lives with the couple in Branson. Jeff's son, Keegan, 11, lives with his mother in Vermont.

"We're so in love," Kimberly says.

Despite their misfortune with ALS, Kimberly won't ask "why us?"

"There are so many horrible people in the world," she says. "But if I say 'why us?' then I'm wishing this on someone else. And I wouldn't wish this on anyone." Well-wishers the world over have responded to Julian's plight.

Arizona Diamondbacks pitcher Curt Schilling, a national spokesman for ALS, sent Julian two e-mails. He told Julian he was in his thoughts and prayers. "I'm beside myself at the thought of some day meeting Jeff and playing a round of golf with him," Schilling says.

Schilling and his wife, Shonda, raise money for The ALS Association and donate money, too. They named their first child Gehrig. "That Jeff is playing on the Tour is nothing short of mind-boggling," Schilling says. "Fine motor skills are as important in golf as any sport."

The first symptoms Julian had last June were difficulty swallowing and a hacking cough. He noticed a lot of saliva settling in his mouth. He thought he might have a sinus condition. As symptoms progressed, he worried his problem might be a brain tumor.

"The disease slowly progresses to cause loss of strength, impairing the ability to locomote, swallow and breathe," Jeffrey Rothstein of Johns Hopkins says. "Eventually, respiratory failure and death."

To keep himself as healthy as possible, Julian pursues chelation therapy, an alternative treatment to mainstream medicine. That's when he sits at the kitchen table and watches as either vitamin C or glutathione flows into his arm.

Kimberly administers the therapy designed to eliminate toxic metals, especially mercury, from his tissues. The idea is the intravenous fluids will bind with the toxic metals, which are eliminated through the kidneys. Kimberly says mercury toxicity can mimic ALS symptoms.

Julian also takes 42 pills a day, vitamins and minerals, that Kimberly has arranged in small, labeled compartments in what looks like a fisherman's tackle box -- but the size of a briefcase. The anti-inflammatory Celebrex is the only prescription drug Julian takes. He doesn't use Rilutek, the one FDA (news - web sites)-approved medication for ALS.

"Rilutek is not natural, and there are side effects," says Kimberly, adding "you don't want to fix one problem and create another."

Julian works diligently with chiropractor Joe Lennon once a week when he's at home in Branson. "I try to make sure his muscles are as balanced as possible," Lennon says.

The sessions temporarily can help Julian's speech improve, sometimes for two or three days. Julian will hum, sing and make chewing motions to work specific muscles.

If he reaches the point he can't play golf, Julian says his next endeavor might be to open a restaurant in Branson, a tourist town near the Arkansas border. "We'll call it 'Julian's,' " he says, grinning. "How's that for originality?"

For now, golf is his elixir.

"I'm playing PGA Tour events," he says. "I can't wait to get my game ready and go play again. I feel good. I'm still living my dream."


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