49ers’ Dwight Clark tragedy: Can football cause ALS? – The Mercury News

In Dwight Clark’s stunning announcement that he had been diagnosed with ALS, the 49ers football legend raised the question that researchers are trying to answer as more and more retired players are discovering the debilitating effects of trauma suffered during their careers:

Did football cause this?

“I don’t know for sure,” Clark wrote his fans in a heartbreaking letter released Sunday. “But I certainly suspect it did.”

Clark went on to encourage the NFL and the players union “to continue working together in their efforts to make the game of football safer, especially as it relates to head trauma.” A grim body of evidence is growing that a connection exists between the game of football and the degenerative neurological disease, which afflicts 6,000 more people each year and claims the lives of half of them within three to five years of diagnosis.

But experts say the research is far from conclusive. While trauma is thought to be a risk factor, it’s still not clear how it may trigger amyotrophic lateral sclerosis or accelerate its progression.

“We know that a protein that gets released during stress, concussions and neurological damage — TDP-43 — is implicated as a cause for ALS as well as other neurodegenerative diseases,” said Fred Fisher, president and CEO of the ALS Association’s Golden West Chapter, which serves people with ALS and their families in 31 California counties and Hawaii.

“But there are people just like you and me who end up getting the disease for no apparent reason — 80 percent of the people who end up being diagnosed with ALS have no family history of it.”

The affliction, which is a progressive compromise of muscles due to nerve degeneration, manifests itself at first with weakness in the arms or legs but eventually can lead to the muscles simply shutting down. Attacking the respiratory system, ALS often turns fatal when a patient succumbs to pneumonia.

 

The ALS-sports link is made all the more pronounced because of the famed athletes who have perished at its touch: Hall of Fame pitcher Jim “Catfish” Hunter,  boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, pro football player Glenn Montgomery, British soccer player Jimmy Johnstone, and others.

There is no sports figure more connected to ALS than Lou Gehrig, the New York Yankees legendary first baseman who in 1939 abruptly retired from baseball after being diagnosed with ALS.

The disease usually strikes between the ages of 40 and 70, at time when sports stars are looking back on storied careers from the perch of middle age. Clark, who is now 60, said he was diagnosed in late 2015.

“He would fit the typical profile of ALS — it’s more common in men, the average age of onset is 56, and it starts in the arm or leg,” said neurologist Catherine Lomen-Hoerth, director of the ALS Treatment and Research Center at UC San Francisco.

For years, studies have linked ALS, along with conditions caused by brain-cell damage like Alzheimer’s disease, to the world of professional football players. In 2012, researchers from the National Institute for Occupational Safety and Health in Cincinnati wrote in the journal Neurology that pro football players are much more likely to die from these diseases.

Their research gathered data on 3,439 ex-professional football players, average age 57 years, who had played during at least five seasons from 1959 to 1988 in the NFL. Poring over death certificates, the team discovered that gridiron veterans had triple the risk of death caused by diseases that destroy or damage brain cells compared to other people. And they had four times greater risk of dying from ALS or Alzheimer’s disease.

There is conflicting research about possible links between ALS and CTE, or chronic traumatic encephalopathy, which affects professional athletes who have had repeated head injuries and has been the focus of the largest share of recent concerns about football’s health legacies. Writing on the ALS Association website, Dr. Edward Kasarskis with the ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, suggested a cautious approach to linking the two.

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Among the most famous cases in the annals of football and ALS was the story of Paul Kevin Turner, a former player for the New England Patriots and the Philadelphia Eagles who died last year at age 46 from ALS. Yet even in his death, Turner’s diagnosis stirred controversy, as news outlets reported — erroneously — that CTE, and not ALS, had killed him. Turner was a key figure in the shared history of the NFL and brain-damage disorders as he served as a lead plaintiff in a major lawsuit filed by former players against the NFL regarding the health risks of concussions in American football.

By studying his brain, researchers at the VA, Boston University School of Medicine and Concussion Legacy Foundation discovered that the cause of Kevin Turner’s ALS was motor neuron cell death triggered by CTE, which is a pathological diagnosis. His clinical diagnosis remains ALS.

Clark’s announcement hit home for Matt Chaney, a 56-year-old Lafayette husband and father who was diagnosed with ALS in 2001. Chaney said he played football from age 15 to 21 — first in high school, then junior college — as did one of his grown sons.

“It’s hard to rule out rattling the brain around and it not causing some sort of chain reaction,’’ Chaney said Monday through the help of his caregiver.

The ALS Association’s ice bucket challenge in the summer of 2014 helped raise $115 million for the association. But Fisher said much of that money has been used by researchers, and Lomen-Hoerth is concerned that the Trump administration’s proposed budget cuts to the National Institutes of Health will hurt ALS research efforts that often depend on philanthropy.

Fisher said Clark is fortunate to live in a state where voters in 2004 funded $3 billion for the California Institute for Regenerative Medicine and “there are more clinical trials going on right now in California than probably at any other time in history,” he said. The center’s website shows at least $62 million has gone to fund ALS research in California.

Former 49ers players who learned about Clark’s diagnosis in the past few months have reached out to Lucy Wedemeyer, whose husband Charlie Wedemeyer was a legendary Los Gatos High football coach and former player who died of ALS in 2010.

Her husband was diagnosed with ALS at age 29 and lived until 64.

Wedemeyer said the Clark family should know that they are not alone. It’s important to note, she said, that a study found ALS patients who lived longer had three ingredients in common: “faith, family, and a sense of humor.’’

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