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Charlie and Lucy (Handout)

Finding quality at the end of life

Healthcare | Two victims of ALS discuss outlasting the medical odds, and how those odds may change under government-based care

Issue: "Profiles in effective compassion," Sept. 26, 2009

Buffalo Bills quarterback Trent Edwards is encouraging NFL football fans to donate between $10 and $50 to the ALS Association for each touchdown drive he directs this fall. "Trent's Touchdowns for ALS" is a tribute to his high-school football coach, Charlie Wedemeyer.

Outlasting the odds that see 80 percent of patients die within five years, Wedemeyer has survived 33 years since his diagnosis with Amyotrophic Lateral Sclerosis-­commonly known as Lou Gehrig's disease, and named for the New York Yankee star who retired from baseball in 1939 after his ALS diagnosis.

Marked initially by muscle weakness or stiffness, ALS is followed by progressive paralysis of limbs, speech, and other functions. Which is why Wedemeyer is such an inspiration to those who know him, including motivational speaker Zig Ziglar, who is urging the California resident to update his 1993 autobiography.

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Kidney failure that forced Wedemeyer into dialysis has curtailed his once-frequent travels the past 18 months. Still, in July he attended a high-school all-star football game bearing his name and an ALS charity walk in mid-September.

Most afternoons find the Hawaiian native on the sidelines at Los Gatos High School, where he tutors freshmen and sophomores. Though hooked up to a ventilator and coaching from a wheelchair, Wedemeyer whispers instructions that are relayed to players by Lucy, his wife of 42 years (the same method they use during speaking engagements).

Though not a household name outside of football, Wedemeyer has gathered a flock of sports, community, and other awards, including the President's Trophy for Disabled American of the Year in 1992. His story has been featured in films broadcast on CBS and PBS.

"It has been remarkable," Lucy said of her husband's continuing impact on the public. "We still hear from the actor who portrayed him, his former players and people all over the world. It's encouraging to know you can still be an inspiration."

Despite their cheerful outlook, one issue has dominated the Wedemeyers' thoughts lately: the possibility of a national healthcare plan.

Just as grassroots objections changed key Republican Sen. Charles Grassley's mind about reform efforts, President Barack Obama faces stiff challenges persuading important sections of middle America.

Despite guarantees from Washington such as no lifetime caps on coverage or dropped coverage for the seriously ill-the Wedemeyers are skeptical. They worry about future care for a 63-year-old man who may not fit Uncle Sam's definition of "quality life."

"This seems to be coming down the pike," Lucy said. "Sadly, it's only through the news or someone making a public outcry that things happen."

What concerns the Wedemeyers most is the prospect of a public insurance option. Their son-in-law thinks that could eventually eliminate private insurance and put bureaucrats in charge of deciding who receives treatment. Keith Andry, a board member of the Charlie Wedemeyer Family Foundation, said that if the government requires every employer to offer insurance and also offers a public plan, employers will move in that direction to save money. That would force Wedemeyer into a program Andry believes will control costs via rationing.

Adding more than 40 million people to the system is also a pre­scription for rationing, said Andry, a real estate broker.

"If Charlie were diagnosed with (ALS) and government insurance was in place 30 years ago, I truly believe he would not be alive today," Andry said. "I don't believe they would have sustained the service if he was in a government plan because they just couldn't afford to keep him going."

Granted, it has been an expensive undertaking. Andry said insurance has paid out millions over the past three decades on Wedemeyer's behalf, although that is the way insurance works: The healthy pay for the unhealthy through their premiums.

Whether reducing access to treatment or other measures, he doubts Uncle Sam would guarantee the care his father-in-law has received thus far. Andry also wonders what would happen if a fiscally challenged government plan had to choose between a 16-year-old with cancer and an ALS patient in his 60s.

"Charlie has done more traveling and given more motivation to people's lives in the last 33 years than his first 30 healthy years," Andry said. "Who judges what quality of life is?

"In his case, I don't see the government looking to that as a quality-of-life issue. They (wouldn't) look at the intangibles-the relationships and the inspiration he has given to so many people around the world. I think that's scary."

Charlie Wedemeyer isn't the most famous person with ALS. That title belongs to British scientist Stephen Hawking, who has survived for 45 years, although seriously ill after being hospitalized last April.

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