Las Vegas Sun

March 29, 2024

Columnist Dean Juipe: Caddie’s fight with disease has gripped the nation

Dean Juipe's column appears Monday, Tuesday, Wednesday and Friday. His boxing notebook appears Thursday. Reach him at [email protected] or (702) 259-4084.

The cruel irony is that the disease is, in essence, named after one of the fittest men who ever lived, a man so robust that he played 2,130 consecutive games in the major leagues and genuinely earned the nickname "The Iron Horse."

Sixty-two years after his death, Lou Gehrig remains an almost mythical figure in American sports. And Lou Gehrig's Disease, or amyotrophic lateral sclerosis, remains a debilitating illness that has no known cure.

But ALS has popped up on the radar screen of late, including Tuesday in Kansas City, where golfer Tom Watson and his ALS-stricken caddie, Bruce Edwards, formally kicked off the "Driving 4 Life" campaign to raise awareness and money for ALS research.

Independent of that effort yet intertwined with the cause is a local fund-raiser Thursday from 5-9 p.m. at Bugsy's (6145 W. Sahara) that will have Mayor Oscar Goodman as its guest host. Thursday is Gehrig's 100th birthday and the local fund-raiser coincides with events throughout professional baseball scheduled to heighten awareness of ALS.

I haven't had any contact with an ALS victim, but we've all seen the touching footage of Gehrig's July 4, 1939, address at Yankee Stadium when he courageously proclaimed himself "the luckiest man on the face of the earth" and many of us saw Watson with his arm around Edwards' shoulders as they came up the 18th fairway at Sunday's final round at the U.S. Open.

Moments later when each took a turn being interviewed on TV their emotions all but got the best of them.

"Bruce's tears will always be with me," Watson said, choking back his own tears. "They're etched in my heart. What he's going through is a horrible thing (and) I want to find something for him.

"I hope that translates into some action to cure ALS. I think that cure is out there."

But that cure, if there ever is one, will not come in time to save Edwards' life. Told on Jan. 15 after an examination at the Mayo Clinic that he had ALS and that he had "one to three" years to live, Edwards realizes the greatest contribution he can make now is as a focal point of the research effort.

"I won't let it get me down," Edwards said after Watson completed his Sunday round. "We'll carry on. I've been truly, truly blessed.

"Tom is the best thing that ever happened to me in my entire life."

Edwards' words were slurred, as they will be for as long as he can speak. That loss of articulation is a symptom of ALS, as is twitching, muscle weakness and difficulty in swallowing and breathing.

Edwards, 47, has lost 20 pounds this year and the use of his left hand. Nevertheless, there he was at the U.S. Open lugging Watson's heavy bag, just as he has done for 28 years of his life.

He not only holds no outward grudges for his fate, he comes across as appreciative that he has Watson and a new wife by his side. He married into a ready-made family in January when his wedding plans with Marsha (and her accompanying four children) were bumped up from the summer by the news that he had ALS.

She said it seemed like the thing to do.

Watson immediately got involved as well, establishing the Bruce Edwards Trust that will merge into the Driving 4 Life campaign. That fund -- which will be managed by the ALS Therapy Development Foundation -- is looking for a solution to a disease that attacks nerve cells in the brain and spinal cord.

While a leading expert suggests that ALS is the result of an enzyme imbalance, little is known of its causes or origins. At present, the only FDA-approved drug on the market related to ALS offers nothing more than an outside hope that it will slightly retard the process.

A former PGA Tour player, 41-year-old Jeff Julian, also has ALS and has likely entered the closing stages of his life.

ALS is a strange and rare disease that catches a person at what should be the midpoint of life and brings with it a fairly quick death. In this world of the passing medical crisis -- the West Nile Virus, SARS and monkeypox among them -- it has a longevity, if not a profile, that equals cancer as a medical mystery.

It felled a man in 1941 who was so revered they later made a movie of his life and dubbed it the "Pride of the Yankees." And part of that pride was the result not only of Gehrig's humility but the fact he took himself out of the lineup in 1939 as he began to feel increasingly clumsy, yet he continued to walk the Yankees' lineup to the umpires at home plate before games until even that simple act was more than he could handle.

Edwards -- and Julian, for that matter -- is going with the same class and dignity.

Maybe the best we can hope for is that by the time Hollywood gets around to doing his life story, the happy ending will be that a cure for ALS has been found.

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