A market of dubious remedies has sprung up as more everyday people fear they have CTE
AILSA CHANG, HOST:
Now a story with special relevance as the NFL and NHL seasons are underway. It's about the fatal brain disease that's been diagnosed in many former professional football and hockey players. But fear of this condition extends far beyond pro athletes. And that has created a thriving market in dubious remedies, as NPR's Sacha Pfeiffer reports.
SACHA PFEIFFER, BYLINE: I want to start this story by explaining how I found this story. A few years ago, I worked on a project about a famous football player who had a tragic life and a tragic death.
(SOUNDBITE OF MONTAGE)
UNIDENTIFIED REPORTER #1: A brain autopsy has revealed former NFL star Aaron Hernandez suffered from a severe form of CTE.
UNIDENTIFIED REPORTER #2: Doctors calling it, quote, "the most severe case they had ever seen in someone his age."
UNIDENTIFIED REPORTER #3: He was just 27 years old when he committed suicide in prison while serving a life sentence for murder.
PFEIFFER: I focused on Aaron Hernandez's diagnosis of CTE, chronic traumatic encephalopathy. It's neurodegenerative, so it affects the brain and gets worse over time, sometimes causing memory loss and mental decline and personality changes. I researched whether CTE could help explain why Aaron Hernandez became so impulsive and angry and ultimately a murderer who later took his own life. He's part of a significant problem in the NFL.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED REPORTER #4: In a new study examining 111 brains of deceased NFL players, 110 had CTE.
PFEIFFER: It's also been found in the brains of hundreds of dead pro athletes who played other types of contact and collision sports. But as I did my research, I kept finding people, dozens of them, who never played a professional sport yet are afraid they have CTE. Several didn't want their names made public, but many openly shared their fears.
LEO PEREZ: I 100% think that I have CTE to some level.
TOMMY EDWARDS: I think I have symptoms of mental illness caused by CTE.
PFEIFFER: If they opened your brain, do you think they would find CTE or the start of CTE?
KATIE WEATHERSTON: I'm sure they would.
PFEIFFER: That's Katie Weatherston of Ottawa, Canada, Tommy Edwards of Radford, Va., and Leo Perez of Chicago. They're part of a quiet population of everyday men and women, typically middle-aged, frightened they may have this devastating disease. All have a history of head injuries, usually from college sports. Now they're dealing with headaches, difficulty concentrating, forgetfulness, mood changes. And they wonder if those blows to the head they took over the years are catching up with them.
VERNON WILLIAMS: We see this pretty frequently. It's not uncommon at all.
PFEIFFER: Dr. Vernon Williams is a Los Angeles neurologist who routinely sees amateur athletes as well as military veterans, people who've hit their heads in falls or accidents, even domestic violence victims who believe their brains are damaged and are convinced they know why.
WILLIAMS: I'll see them, and they fill out a new patient form. We ask, well, what's the main reason you're here for today? And I've had people write in, I have CTE.
PFEIFFER: Here's the problem with that conviction - CTE can only be diagnosed through an autopsy. So while all these people may believe they have CTE, they can't find out for sure. Even if they could, there's no treatment. That's left many of the people I've interviewed feeling desperate. And that desperation has created ideal conditions for a flourishing industry of unproven, unregulated health care products because when you're that afraid, you're willing to try almost anything.
UNIDENTIFIED CHILD: Coach, I'm winning. I got five to zero.
PFEIFFER: Lee Brush understands that state of mind.
LEE BRUSH: Five to zero? Johnny, you dropped one?
UNIDENTIFIED PERSON #1: Just keep going. Go.
PFEIFFER: Brush coaches his son's flag football team in Scottsdale, Ariz. Brush got multiple concussions back when he played college football for Purdue University. He's also had head injuries from skiing and skateboarding and from a car crash once. Several of them knocked him unconscious. He's now 47. And in his 30s, he started experiencing a cascade of problems.
BRUSH: They weren't just headaches. They were coming from the back, across to one eyebrow. Then they would slowly go across the other eyebrow, right behind the eye.
PFEIFFER: At first, he thought it was job stress and family pressures. He's a trained engineer with a wife and two kids. But he began to worry something more serious was going on.
BRUSH: Things that started to scare me were the ringing in the ears. I call it electric southern crickets. Like, if you were ever to sit on the patio at night and you hear all the crickets going, but imagine those electric. Well, I'd never had that before.
PFEIFFER: His eyes began to hurt. He started forgetting things, had trouble focusing. His work performance was slipping. Brush is athletic and physically fit, so he didn't understand what was wrong until he saw the 2015 movie "Concussion," starring Will Smith as a pioneering CTE researcher, and everything seemed to add up.
BRUSH: Difficulty thinking, cognitive impairment, impulsive behavior - yes. Depression or apathy - absolutely. Short-term memory loss - without a doubt. Difficulty planning and carrying out tasks - 100%. Emotional instability - you just need to ask my wife that one question.
PFEIFFER: Brush can joke about some of this. But he also had an incident behind the wheel where another driver cut him off, and he became so infuriated that he was appalled by his own reaction.
BRUSH: I wanted to harm the person to the point of probably death. It was just complete uncontrollable rage.
PFEIFFER: What is wrong with me? He thought. That pushed him to get a neurological exam, but the results were inconclusive. Doctors said he may have brain trauma caused by head injuries, but they couldn't say whether it was CTE. They suggested a sleep study and other tests, but Brush didn't see the point.
BRUSH: You go to get help. And when you find out there's no medicine to really help you - we can't diagnose you, there's no drug we can give you - you hear there's nothing they can do, and you go insane.
PFEIFFER: He began hearing from old football teammates and discovered many of them had the same symptoms, the same fears, and had gotten the same unsatisfying responses from doctors.
BRUSH: Every single one of us saying, yeah, we probably have it. Yeah, we got it. If they've been hit in the head, they think they have some form of CTE.
PFEIFFER: It's impossible to quantify how many people might have CTE or harbor CTE concerns because the potential pool is so massive. It includes anyone who's ever played a contact sport or suffered multiple head injuries.
ANN MCKEE: I don't know any way to get a hold of that number.
PFEIFFER: Dr. Ann McKee directs the Boston University School of Medicine CTE Center, which studies the brains of people whose families donated them after they died.
MCKEE: But the fact that we're finding it so easily, the fact that we're finding hundreds of cases a year - it cannot be rare.
PFEIFFER: Other doctors doubt CTE is so widespread. They say the same symptoms could be due to a curable condition, like a vitamin deficiency or hormone imbalance or to normal aging. But McKee says many doctors are too dismissive of CTE fears.
MCKEE: A lot of players that I've talked to who have headaches and maybe depression and some memory loss don't get evaluated seriously if they think it might be related to their football.
PFEIFFER: So she says they need open-minded physicians who will consider all possible causes of their symptoms, including past head injuries.
MCKEE: And then, finally figuring out that maybe this represents a case of CTE.
PFEIFFER: But since no doctor can officially deliver that diagnosis until a patient is dead, anyone with CTE fears is simply left to wonder and worry. Lee Brush found himself thinking that cancer or a brain tumor would be preferable. At least that would be a definitive diagnosis with a potential cure, he thought.
BRUSH: How are you going to live from that point on after you just were told that you may have something that's terminal? And then the fear of having that - you know what? I'm going to kill myself if it gets too bad. Those were my thoughts. And they're echoed by the guys that I have come in contact with.
PFEIFFER: Lee Brush has been managing his CTE concerns for more than a decade. He says he's in a relatively good place now, thanks to an antidepressant and therapy sessions with his pastor. He tries not to dwell on what he cannot control, and he believes calming his fears has improved his symptoms. But he knows many people who've resorted to extremes to try to get better.
PFEIFFER: So you want to lead the way?
EDWARDS: Yeah, yeah, yeah.
PFEIFFER: That kind of desperation is what brought Tommy Edwards to this propane supply company in southwest Virginia.
We think we probably passed it. It's a place with the gigantic tanks across the railroad tracks.
EDWARDS: Oh, yeah. Be careful coming through here.
PFEIFFER: Edwards is here because he wants a very large propane tank so he can make a hyperbaric oxygen chamber. He thinks that might alleviate what he believes are his CTE symptoms. And he knows that some big-name football players, like Joe Namath, say hyperbaric oxygen therapy helps them recover from concussions. Tommy Edwards has already run his idea by the propane company's owner.
EDWARDS: I stopped by to check on that tank. I had some brain scans done - trying to build a hyperbaric chamber. You said you had an old thousand-gallon tank...
UNIDENTIFIED PERSON #2: Yeah.
EDWARDS: ...You'd be able to swing my way.
PFEIFFER: Scuba divers use these chambers to treat the bends. It involves breathing pure oxygen in a pressurized environment.
We walk to what looks like a scrap yard behind the building. Near a back fence covered with rust and branches is a huge, empty tank the owner has in mind for Tommy.
UNIDENTIFIED PERSON #2: You gone cut the end of it off and then have a roller in there?
EDWARDS: I'll probably cut a door in the side, and then we'll put a flange on the inside with some rubber gaskets and...
UNIDENTIFIED PERSON #2: Tanning bed as well?
EDWARDS: Well, not so much, but maybe a TV or something.
PFEIFFER: Tommy Edwards has been diagnosed with bipolar disorder. He also struggles with depression and suicidal thinking. He believes his mental health problems are due to CTE. After all, he was such a big football star in high school and college that his nickname was Touchdown Tommy.
EDWARDS: I was vicious, didn't shy away from contact.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED REPORTER #5: We began with the biggest story of the day - Radford's Tommy Edwards. He has been known to send many a bad vibe inside an opponent's helmet with his bruising style of running.
EDWARDS: I mean, I knocked out a defensive back when I was in Boise. It was the ESPN hit of the year. And the guy was just a ragdoll in the air before he hit the ground.
PFEIFFER: Now, Edwards wonders about the damage football may have done to his brain. But the FDA has not approved any treatment for CTE, let alone hyperbaric oxygen therapy. And it has risks, from ruptured eardrums to lung collapse. But Edwards says it's worth trying because no doctor has been able to make him feel better. And do-it-yourself instructions are all over YouTube.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PERSON #3: This is take two of building a hyperbaric chamber. This one came out successful.
PFEIFFER: Hyperbaric oxygen therapy is part of a growing brain health industry that's benefiting from CTE fears. Products range from experimental stem cell treatment to a supplement called memory powder. They're often expensive, not covered by insurance, and many doctors question their value. But if you think your brain is disintegrating and mainstream medicine can't help, that's how you, like Tommy Edwards, might end up in a propane tank scrap yard.
In your quest to get better, do you ever worry that you spend time and money on things that might have been a waste of time and money?
EDWARDS: Oh, hell yeah. Definitely. I mean, if somebody said this witch doctor will cure you, I mean, there would be people lining up to the witch doctor, I mean, just because the hope - just the hope.
PFEIFFER: And that hope for a cure, combined with the fear of developing CTE, is exactly what the sellers of these products are catering to. Sacha Pfeiffer, NPR News.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.