ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 12-18-2006, 09:15 AM #1
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BobbyB BobbyB is offline
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Join Date: Aug 2006
Location: North Carolina
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BobbyB BobbyB is offline
In Remembrance
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Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Default Going down swinging

Going down swinging
Man who died of ALS tirelessly battled the disease

BY PAUL POVSE

Published Monday, December 18, 2006


Among the many regular-guy things Max Harrison enjoyed in life, one was playing softball.

A slender 5 feet, 10 inches tall, he was a good lefthanded hitter and fast, too. In the service, they called Max "The Breeze."

And he was a born organizer.

"When Max and I became friends, he asked me to play softball with him," recalls close friend and former co-worker Whitney Slavens. "Now I am not a very good softball player, so I told him, 'As long as we're not out to win. Not if they're going to be serious.'"

Out of allegiance to Max, Slavens joined.

"We were called the Cellar Dwellers because we worked in the basement (of the Prescott Bloom Building)," she said.

Playing softball, though, was an early indicator that something was bothering Max.

"First he started to wear a knee brace," Slavens said. Max's legs had begun to weaken. Ultimately, his knees would hyperextend backwards.

"Probably it was sometime in 2001 that he noticed pain in his legs," said Max's uncle, Mike Harrison of Springfield. "It was lucky that it started there, rather than his upper body."

Lucky, only to a degree, because the twinges turned out to be the first symptoms of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). The disorder attacks nerve cells in the brain and spinal cord, weakening the arms and legs and making it difficult to speak and swallow and, finally, to breathe.

On Nov. 8, Max Harrison died of ALS at Memorial Medical Center. He was 36 years old.

From the first buckles in the legs to the time of his death, Max was a fierce advocate for education into the mystery that is ALS. He coordinated bowling and walking fundraisers in the Springfield area. There were eight of them, raising more than $180,000. Max walked half of the first walk-a-thon in St. Louis, not giving up until the braces began to cut into his legs.

In 2003, he and Slavens met with U.S. Sen. **** Durbin, other Illinois-based leaders and families affected by ALS in Washington, D.C. They lobbied for an increase in the Department of Defense budget and for the reduction or even elimination of the waiting period for those with ALS to receive Social Security disability. And they got results.

Max was a Gulf War veteran - a mechanic in Kuwait for two years - and some studies indicate that people who served in the Persian Gulf are twice as likely as civilians to develop Lou Gehrig's disease. Military personnel involved in combat from 1919 to 1982 have been shown to be particularly susceptible to ALS. (Exposure to chemicals, trauma and demanding physical activity are among the theories.)

The disease strikes only about 5,500 people in the U.S. annually, about 10 percent of whom inherit it genetically.

"The government will never say specifically what caused the gene to wake up in Max's body," said Slavens, now a disability examiner for the Social Security Administration in Austin, Texas. "But they are, after the fact, supporting veterans with priority needs."

The son of Max and Cynthia Harrison of Tovey, Max grew up among three sisters and one brother in Christian County, graduating from South Fork High School in Kincaid and later with a degree in history from Eastern Illinois University.

"He was (especially) close to his sisters," said Slavens. "He knew he could be a strong male figure without being a hard guy."

Christina Murphy, 37, of Pawnee, one of Max's sisters along with Annette and Michelle, saw her brother evolve into a crusader against ALS.

"When he first found out he had Lou Gehrig's disease, he got involved in a study at Washington University in St. Louis," said Murphy. "I took him to (many of) his appointments there and to those at VA hospital clinics in St. Louis. He wanted people to know about it."

Said Slavens: "They tell you right off the bat you have 31/2 years. He made the most out of every day."

Max asked for nothing from the Veterans Administration or ALS Association. He declined any medication that would merely prolong his life.

"For Max to take an aspirin would be major," Slavens said. "He pushed his limits to walking before he went into a wheelchair. He didn't want any special treatment."

Margaret Brooks, a co-worker at what is now the state's All Kids insurance program, was drawn into becoming an ALS activist largely through the force of Max's personality. They were friends before the disease was diagnosed.

"Even in his wheelchair, he didn't want you to help him," said Brooks. "I'd say 'Let's go for a ride,' and he'd say 'Don't you dare. I don't need your help yet.' He'd say, 'I have so many mothers at work.'

"On the morning of a bowl-a-thon, we'd get to the Spillway Lanes at Town and Country on MacArthur and get the bowling alley set up. Even when he didn't have much use of his hands, he'd always come up, sorting T-shirts and saying, 'OK, what are my duties, boss?' "

"Max lived the hand he was dealt. It was handed to him, and he made something beautiful out of it."

Mike Harrison was motivated to write a letter to The State Journal-Register about his nephew and his U.S. Army service in Kuwait.

"Max really fought two wars. He went to Desert Storm and fought for his government, came home and (five years later) was diagnosed with ALS. In Max's 36 years, he gave more than a lot of people do in 70 years."

He loved baseball, particularly the St. Louis Cardinals. On a day devoted to ALS awareness (the Harrison family attended), Max had his photograph taken with then-Cardinals pitcher Woody Williams. He brought back a Williams-autographed jersey that was raffled at the first Springfield ALS walk-a-thon.

Courtesy of the ALS Association's St. Louis chapter, Max's name is printed on one of the commemorative bricks laid in front of new Busch Stadium.

With help from his family including his brother Patrick, Max continued his work at All Kids up to July 10.

"Family members would ask him, 'Are you sure you want to go to work?' and Max (with their assistance) would go to work no matter what," said Mike Harrison.

At the office he was known for his "Maxisms" - little sayings like "It's time to feed the monkeys."

"He was just talking about the adults in the unit," said Slavens, referring to the drawer full of candy Max kept on hand for co-workers.

After work on Fridays, Max enjoyed an occasional beer with colleagues at the Track Shack, where he like to talk about his son Grant, 9, baseball, music or strategy for the next ALS fund-raiser.

Slavens and Max remained close after she moved to Austin in 2003. He managed to visit her there in April 2004. He was in a wheelchair then, making for a demanding trip.

"With everything that he was dealing with, he still came down here to Austin to make sure I was doing OK."

In March, when he received an award from the Illinois House for "unselfish advocation of ALS awareness, education and fundraising," Max was too modest to tell even his family about it.

"Being in the newspaper would have made him uneasy," Slavens said. "But with an article we may educate one more person about ALS."

Her best friend Max Harrison, she said, "wasn't dying with ALS. He was living with ALS."


Paul Povse is a columnist with The State Journal-Register who can be reached at 788-1531 or paul.povse@sj-r.com.




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Want more info?
To learn more about Max Harrison or ALS, visit his Web site at www.Maxals.org. If you’d like to help researchers find a cure, you can send a tax-deductible donation to: United Community Bank, 1900 W. Iles Ave., Springfield, IL 62704. Checks should be payable to: ALSA. All proceeds go to the ALS Association.
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