When Michael Keck was hospitalized with a heart infection at 25 years old, he asked his wife to donate his brain to a brain bank for research when he died.
Keck had dropped out of college when he started failing courses, started verbally and physically abusing his wife, had trouble staying awake during the day or eating as much as usual, and generally felt unworthy.
During 16 years of playing football, he had suffered at least 10 concussions. His symptoms pointed to depression or post-concussive syndrome. So when Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System, saw his brain after he died of a heart attack, she was stunned. She saw signs of chronic traumatic encephalopathy, or CTE, which can only be found after death, that were striking for someone so young.
"I'm always surprised to see this type of disease in someone so young," said McKee, who is also a professor of neurology and pathology at Boston University School of Medicine. "At age 25, brains can still be developing, pruning synapses. So I'm always taken aback. I can't get used to it."
The CTE diagnosis was not a surprise, however, to one person: Keck's wife.
"It's what he wanted to prove to everybody," Cassandra Keck told the Associated Press last year. "He was really suffering, and nobody believed him."
His case study, published in JAMA Neurology this week, may do more than simply prove him right: It lends a sense of urgency to find a way to diagnose CTE during life, researchers said.
"There are huge efforts going on all over the country to be able to diagnosis it," McKee said, from looking at biomarkers that could be identified in blood samples to neuroimaging techniques.
Putting Keck's case in perspective is difficult because doctors still don't know how prevalent CTE is. One thing scientists have learned in the past 10 years, since the first case of CTE was diagnosed, is that most people who get concussions recover quickly, and most of those who suffer from post concussive syndrome for longer periods still do not get CTE.
Doctors and scientists would love to be able to parse out what puts people like Keck at risk, to be able to advise them of their unique odds, to avoid the experience Keck had of presenting non-specific symptoms to doctors who attributed them to other things, such as depression or chronic headaches.
"Not everybody gets this disease, so what was it about him?" said Dr. James Noble, an assistant professor of neurology at Columbia University Medical Center who wrote a commentary accompanying the case study. "Was there a way we could have known?"
Somehow, in other words, it seems likely that Keck was particularly susceptible to the disease.
"It could be genetic modifiers, family history, etc.," McKee said. "There are bound to be other factors that make the risks higher or lower, and we're proceeding full speed ahead to try to understand."
A neuropsychological evaluation unique to Keck's case helped, for example: While the evaluation showed impaired learning and difficulty planning and organizing, his memory was intact, something which could rule out an otherwise similar disease such as Alzheimer's. Keck's case was also unusual because he developed symptoms during his football career, whereas most known cases had a latent period after their athletic or military career, McKee said.
Still, the take-away from this case should be that "our conventional means of diagnosing concussion and CTE is really limited," Noble said. "Right now the way we diagnose concussions is entirely contingent on the players telling us what happened. (It would be helpful to have) better methods of diagnosing it at the moment. What biomarkers can we use after the game or during the game to tell us if someone is injured?"
Noble also calls for a monitoring program at all levels of athletics, similar to the tracking system the NCAA uses. Ideally, he said, someone injured in a peewee league would have a record that followed her to high school and college. It may also allow researchers to discern patterns such as regional differences or approaches to practice.
It's been about 10 years since the first case of CTE was diagnosed posthumously. It's reasonable to think, Noble and McKee agreed, that in the next 10 years, there will be a way to diagnose and help patients while they're living.
"If someone dying so young isn't inspiration to make us want to learn more, what is?" Noble asked.