Consider This from NPR - NPR Investigates: CTE, Desperate Patients, And The Hope For A Cure (Pt 1)

Episode Date: November 22, 2021

CTE — chronic traumatic encephalopathy — is a degenerative brain disease found in many former professional football and hockey players, for whom blows to the head have long been part of the job. But those injuries also occur outside the world of pro sports. And as awareness of CTE has grown, so has a thriving market of dubious remedies marketed to everyday people who believe they are suffering from CTE — a disease that can't even be diagnosed until after death, through an autopsy of the brain. In the first of two episodes, Sacha Pfeiffer of NPR's Investigative Team reports on some of those desperate patients and their hope for a cure. If you or someone you know is struggling with thoughts of suicide, contact the National Suicide Prevention Lifeline at 1-800-273-8255. In participating regions, you'll also hear a local news segment that will help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

A warning here. Suicide is part of the story that you're about to hear. So if you or someone you know is struggling with thoughts of suicide, you can call the National Suicide Prevention Lifeline at 1-800-273-8255. Aaron Hernandez seemed to have everything. A professional football career, a $40 million contract with the New England Patriots, a fiancée, a new baby daughter, and an appearance in the 2012 Super Bowl. Aaron Hernandez is about to complete a twisted journey from the Super Bowl to prison by the age of 25. In the summer of 2013, the football star was arrested at his home near Boston and charged with murder. Patriot star Aaron Hernandez being put into the back of that North Attleboro police cruiser. Two years later, he was found guilty. Guilty of murder in the first degree.

Murdering his friend, Odin Lloyd. Lloyd's body was found in an industrial park less than a mile from Hernandez's home. He'd been shot six times. It was a tragic story with a tragic end. New at 11 now, a brain autopsy has revealed former NFL star Aaron Hernandez suffered from a severe form of CTE.

Doctors calling it, quote, the most severe case they had ever seen in someone his age. He was just 27 years old in April when he committed suicide in prison while serving a life sentence for murder. Hernandez had CTE, chronic traumatic encephalopathy, a degenerative brain disease found in many former pro football and hockey players for whom blows to the head have long been part of the job. But those injuries also occur outside the world of pro sports. 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?

Oh, hell yeah. If somebody said, this witch doctor will cure you, I mean, there would be people lining up to the witch doctor. Consider this. A new industry of CTE diagnosis and treatment is growing with the promise of relief for everyday people who think they might have the disease. NPR's investigations team looked into those treatments and found a thriving market in dubious remedies. From NPR, I'm Audie Cornish. It's Monday, November 22nd. or visit wise.com. T's and C's apply.

It's Consider This from NPR. Today and tomorrow, we'll bring you a two-part story from our colleagues on NPR's investigations team. It's a story NPR's Sasha Pfeiffer began looking into in the wake of the Aaron Hernandez case. She reported on the football star's demise and followed his story down an unexpected path. Here's Sasha. I focused on Aaron Hernandez's diagnosis of CTE.

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. In a new study examining 111 brains of deceased NFL players. 110 had CTE. 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. I 100% think that I have CTE to some level. I think I have symptoms of mental illness caused by CTE. If they opened your brain, do you think they would find CTE or the start of CTE? I'm sure they would. That's Katie Weatherston of Ottawa, Canada,

Tommy Edwards of Radford, Virginia, 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. We see this pretty frequently. It's not uncommon at all.

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. 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. 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 healthcare products. Because when you're that afraid, you're willing to try almost anything. Coach, I'm winning. I got five to zero. Lee Brush understands that state of mind. Five to zero. Johnny, you dropped one. Just keep going. Go. What? Brush coaches his son's flag football team in Scottsdale, Arizona. 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. They weren't just headaches. They're coming from the back across to one eyebrow. Then they would slowly go across the other eyebrow, right behind the eye. 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. Things that started to scare me were the ringing in the ears. I call it electric southern crickets. Like if you were able to sit on the patio at night and hear all the crickets going,

but imagine those electric. Well, I never had that before. 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. 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. 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. I wanted to harm the person to the point of probably death. It was just complete, uncontrollable rage. 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. 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, you go insane. 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. 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. 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. I don't know any way to get a hold of that number.

Dr. Anne McKee directs the Boston University School of Medicine's CTE Center, which studies the brains of people whose families donated them after they died. 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. 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. A lot of players that I've talked to with headaches and maybe depression and some memory loss don't get evaluated seriously if they think it might be related to their football.

So she says they need open-minded physicians who will consider all possible causes of their symptoms, including past head injuries. And then finally figuring out that maybe, maybe this represents a case of CTE. 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. 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 are my thoughts.

And they're echoed by the guys that I have come in contact with. 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. So you want to lead the way? Yeah, yeah, yeah. 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. Oh yeah, be careful coming through here. 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. I stopped by to check on that tank.

I had some brain scans done, tried to build a hyperbaric chamber. He said you had an old 1,000-gallon tank, you'd be able to swing my way. 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 scrapyard behind the building. Near a back fence, covered with rust and branches, is a huge empty tank the owner has in mind for Tommy. You going to cut the end of it off and then make a roller in there?

I'll probably cut a door in the side, and then we'll weld a flange on the inside with some rubber gaskets. Tanning bed as well? Well, not so much, but maybe a TV or something. 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. I was vicious. Didn't shy away from contact. 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. I mean, I knocked out a defensive back when I was at Boise. It was the ESPN Head of the year. And the guy was just a ragdoll in the air before he hit the ground. Now, Edwards wonders about the damage football may have done to his brain. But the 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. This is take two of building a hyperbaric chamber.

This one came out successful. 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 scrapyard. 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? 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. And that hope for a cure, combined with the fear of developing CTE, is exactly what the sellers of these products are catering to. Sasha Pfeiffer with NPR's investigative team. Tomorrow on the show, her report continues, with a closer look at one doctor selling brain health remedies at a high cost. You know what neurofeedback is? You know what TMS is?

Transcranial magnetic stimulation? No. Meditation? Prayer? There's an app I want you to try. There's some people using stem cells. Come back to that memory powder. That's in our next episode.

It's Consider This from NPR. I'm Adi Cornish.