Germany slow to take CTE brain injury from sport seriously

"At least I'm still alive," Erich Grau told DW. "When I go to the cemetery, I think, 'Now they're lying down there.' Six to eight former [American] football players who didn't make it to their 60th birthdays, and they were completely out of it for the last five years of their lives. That's hard to take."

The now 68-year-old Grau was one of the pioneers of American football in Germany. The founding member of the Ansbach Grizzlies played in the American Football Bundesliga's first season in 1979. He became the German national team's first starting quarterback two years later.

Today, he is the only former professional athlete in Germany to speak publicly about the illness he believes he suffers from:  chronic traumatic encephalopathy, or CTE.

Grau will probably not find out for certain in his lifetime whether he has CTE. To date, the disease can only be definitively diagnosed after death through a brain autopsy. But Grau has been experiencing the symptoms that scientists associate with CTE for over 20 years.

His memory is getting fuzzier and fuzzier. He schedules any conversations with people he doesn't know personally before noon as he can hardly concentrate later in the day.

"I also feel dizzy more and more often," he said. "The MRI shows that my brain is atrophying [shrinking] in all areas."

His physical coordination is deteriorating as well, he said.

"I know it's not going to get any better. But I'm trying to hold on to what I still have," he said.

Higher risk of suicide

At the age of 45, the former secondary school teacher first noticed that he was starting to have trouble concentrating and suddenly becoming quick-tempered and aggressive — something that had never been in his nature.

Studies have shown that one's personality can change dramatically during the earliest stage of the disease. The risk of suicide increases and violent outbursts are also possible.

Australian rules football player Heather Anderson took her own life in November 2022 at the age of 28. Philipp Adams, a former cornerback in the National Football League (NFL), shot six people and then himself in April 2021. The autopsies on the brains of Anderson and Adams found that both had been suffering from CTE.

Around 350 cases of CTE have been confirmed in former NFL players. The disease has also been detected in deceased players in other contact sports such as rugby, ice hockey, football, boxing and martial arts.

Their brains were significantly reduced in size. In addition, whole clumps of tau protein were found in the outermost layer of the cerebrum. These tiny protein building blocks stabilize the nerve cells. When the brain makes sudden movements, there is a risk that the proteins will fold incorrectly. This can damage the nerve cell to such an extent that it dies. This can lead to a chain reaction.

Like all neurodegenerative diseases, including Alzheimer's and Parkinson's, CTE is currently incurable. Only the symptoms can be treated.

No sports brain bank in Germany

In the United States, as well as Australia and New Zealand, countries where Aussie rules football and rugby are particularly popular, "sports brain banks" have been established. There, donor brains from deceased athletes are collected and studied.

"It would be a dream come true for me if we also had a sports brain bank specializing in CTE in Germany, to which my brain could be taken after my death," Grau said.

The German Center for Neurodegenerative Diseases (DZNE) is currently setting up a brain bank. Researchers here face a shortage of tissue material, as Germans tend to be more reluctant about organ donations than people in many other countries.

Minor blows to head also dangerous

Researchers were aware of the clinical profile of CTE as early as the 1920s. Back then, it was known as dementia pugilistica (boxer's dementia) or simply being punch drunk. Even back then, it was widely thought that heavy blows to the head could cause lasting damage to the brain. Now we know that even repeated minor blows to the head — blows that aren't sufficient to cause a concussion — can have serious consequences.

"If you accumulate these head concussions over many years, they lead to neurodegenerative processes similar to head trauma," Inga Körte, professor of neurobiology at Ludwig-Maximilians-Universität in Munich and Harvard Medical School in Boston told DW.

"This has been established by research over the past 10 years in different sports, age groups and countries. These are robust results."

But apparently, hardly anyone in Germany is interested.

Körte, who has been conducting research on CTE since 2009, visits sports clubs to inform parents about the possible long-term effects of head concussions.

"At one large football [soccer] club, whose name I won't mention, only one interested father turned up," Körte said. "It's obviously not yet an issue that parents in elite-level sports in this country are dealing with."

Körte's field of research also includes other ailments such as Alzheimer's Disease or depression.

"It's about brain health as a whole. Can the brain tolerate being constantly shaken? The answer is probably no. Or maybe some brains can tolerate it, but not all of them."

Rather be a 'hero of the past'

Erich Grau is convinced that "certainly a quarter" of his former football teammates are currently experiencing "extreme mental decline." Despite this, they do not talk about the CTE when the guys he played with get together.

"They would rather be the heroes of the past than take these symptoms seriously," he said.

This article was originally written in German.