Can Football be saved from CTE? by Laurie Carr

Can football be saved from CTE? Some people think so. New rules, better helmets, concussion protocols to take players out of the game, but is it enough? CTE, Chronic Traumatic Encephalopathy is a degenerative brain disease caused by repetitive hits to the head. These hits don’t have to cause concussion. Most of the time sub-concussive hits, over the season, or many seasons, cause negative changes in the brain. Many experts believe these changes are the precursors to several neuro-degenerative diseases, including CTE.

Why my interest in the subject? Around 10 years ago I asked myself the question, could it be CTE that was affecting my husband? It was all over the news; ex-football players with a brain disease; some committing suicide, some with neurological disorders, behavioral problems, anxiety, anger.  My husband of 49 years, Larry, played football, starting at age 10, through high school, college and in the Canadian Football League. As a college Hall of Fame middle linebacker, he sustained thousands of hits at a time when they were coached to hit with their heads; they were told it was their best weapon. Could the changes I was seeing in him over the years be that same disease?  I finally convinced him to see a doctor. After 10 hours of neuro-cognitive testing his diagnosis was “significant brain damage due to football.”

As devastating as that diagnosis was, there is still no way to be absolutely sure it is CTE. A brain has to be examined after death for a definitive answer. But his symptoms over the years convinced us it probably was, especially given the strange changes I began noticing in him. When Larry was in his 40’s he started having problems with his language abilities. He would forget words, which we all do, but he would make up nonsense words or even strange sounds to replace it; sometimes speaking in complete sentences of gibberish. Even more upsetting was that my easy going, calm, peaceful, and funny husband slowly began to get anxious, paranoid, suspicious, overly emotional, and jealous. By the time he was in his 60’s I barely recognized who he had become.

It got so bad a few years ago, that he was convinced his supervisor at work was out to get him fired. He was upset over everything she did and worried constantly that he would lose his pension if she succeeded. He perceived her every action as an assault on his department or himself and so he began writing memos, to her, her supervisor, anyone he could think of; over 200 of them over a three-year period. At the time, I thought it was probably excessive, but I wasn’t there, what did I know? Finally, in 2015, he felt like he had no choice but to retire early.

One year later, I retired early too and that’s when I realized how devastating these changes in his behavior and personality were to our relationship, and to each of us personally. Larry had become so difficult to live with. It seemed like everything I said or did annoyed him and we would bicker and fight. I was never afraid of him physically, but I was afraid of his powerful emotions. He had always been so logical, a Ph.D. in exercise physiology, but now his jumbled way of thinking made no sense to me. His overly emotional response to ordinary things was confusing and I felt like I was always walking on eggshells, trying to avoid a confrontation. The worst part of this was that he couldn’t let things go. Something I said or did would recycle in his head for days keeping him upset and edgy. I use to say this was when the “black cloud” descended. It was like a negative energy would settle on our home, sucking out all happiness, and nothing I could do or say would make it go away. Eventually, the remorse would set in and Larry would be wracked with guilt and shame for a few more days. It seemed like a never-ending cycle.

I wasn’t the only one who could set Larry off. One day in a department store looking for shoes, a man came and stood next to Larry. He was just looking at the shelf above, but Larry became incensed. He stood up, red faced and said loudly, “we have to get out of here,” and he stormed off. As I chased him out the store, grateful he didn’t confront the man directly, he yelled “what was that guy doing? Why was he so close?” I tried to explain that the man was just there to buy shoes. He had every right to look. But my words fell on deaf ears.

A few months after I retired, I had an idea. What if we spent some time in service, maybe that would help calm Larry and we could be some good in the world at the same time. So, in 2016, we drove from our home in Southern California to Boston to do records preservation work for our church. Our assignment was to digitize 200-year-old records from a Probate Court just outside Boston so they would be available to the Church’s genealogy database. I thought it would be perfect for Larry, a new place to see the sights, a great apartment to live in, valuable work, the same routine every day, nice people around us. Oh, was I ever wrong! The drive, the move, the work, the people, everything was stressful for him. If people came into our work space he became anxious and angry. I was forever reminding him that it was their place of work and they had every right to be in the archives where we were set up. Nothing really changed, only now I was on his nerves 24/7, in a small apartment with only one car!

After one especially rough night of bickering, Larry realized that Dr. Ann McKee, a premier researcher in the field of CTE was at Boston University, only few miles away. Without any introduction, he decided to write her an email in hopes that she might have some answers. To his great surprise she emailed him back and invited us to come to her office. She was gracious and kind the day we met, and she listened as he described what was happening to him. Finally, she said that she only saw the brains of deceased players, but the symptoms he described were similar to what the wives, parents and siblings of those players told her. Sadly, she told him that there was nothing she could do for him, but he looked good and sounded good and he should go live his life the best he could. We left her office feeling hopeless and sad.

A few weeks later, after another terrible fight, Larry sent her another email. This time in desperation, he asked if there was anything at all she could offer. She gave him the names of two of her colleagues, both founding members of the Boston University CTE Center, Dr. Robert Stern, and Dr. Robert Cantu. We made appointments with both. She also gave him the name of a colleague of hers who was doing interesting work at the Boston VA and told us we should go and see her as well. The visits with Drs. Cantu and Sterns offered no additional help but the trip to the Boston VA changed our lives.

Dr. Margaret Naeser at the VA had been using something called photobiomodulation to treat returning Gulf War vets with traumatic brain injury and PTSD, with remarkable success. She was excited at the prospect of using it on an ex-football player with possible CTE. The science of photobiomodulation, the use of infrared led lights to affect positive changes in cells, has been around for over 50 years. But a method of delivery for the brain had only been developed recently and that was what Dr. Naeser had been using on Vets and wanted to use on Larry. After initial MRI’s and neuro-cognitive testing, he was admitted to the study. He then began treatment with red and near infrared light applied directly to his head, 3 times a week for 6 weeks.

No one was sure what would happen, if anything, but within a week or so of driving to the VA for treatments in Dr. Naeser’s office, I felt like Larry was changing for the better. After a couple of weeks, I was positive Larry was calmer, more peaceful. After a month he was less anxious, we weren’t fighting and his emotional outbursts all but stopped. He wouldn’t admit anything had changed, but for me, I had my husband back!

However, then came the part of the study protocol that I dreaded; after 6 weeks of treatment he began 8 weeks off. I was so afraid of this. I worried that he would go back to the way he had been, and frankly, I didn’t know if I could handle that. The story Flowers for Algernon, by Daniel Keyes kept popping into my head. In it a mouse named Algernon was given a treatment that made it faster and more accurate. The same treatment was given to a mentally disabled man named Charlie and he became a genius. The story ended sadly though because the treatment eventually stopped working, and both the mouse and the man returned to the way they were before. This is what kept me up at night. Would the light treatment Larry was using be temporary as well? Would he go back to how he was or would he be even worse? No one knew the answers to those questions.

Unfortunately, after only one week off treatment I saw negative changes. After only a couple of weeks off Larry became moody, emotional and anxious. By 6 weeks off he was back to where he began. At 7 weeks off I had to physically restrain him from rushing out of the car and attacking a pedestrian who yelled at him. That night we contacted Dr. Naeser and said we couldn’t hold out any longer and he needed to begin home treatment, which was the next step in the study. We had previously purchased a photobiomodulation headset developed by a company named Vielight specifically to use at home. She agreed, but he needed to have more MRI’s and tests before he could begin.

Larry and I were both really nervous about using the Vielight headset at home. It was different from what he used at the VA. Would it even work? It took longer than the first time around, but after a couple of weeks I began to see positive changes. Larry’s mood was lighter, he was less stressed out. After a couple of months using the Vielight, he was back to where he had been after the initial 6 weeks of treatment. He has been using the device ever since, faithfully and he will for the rest of his life.

I know, it all sounds too good to be true and if I hadn’t lived it myself, I would agree. However, it wasn’t just my subjective observations that said Larry was better. The pre-treatment MRI’s showed a brain that wasn’t communicating well at all. Post treatment showed marked improvement, a brain that was more synchronized and functioning the way it should. In the emotional tests prior to treatment, Larry’s PTSD (Post Traumatic Stress Disorder) score put him in the category of returning Vets, and he had never been in the armed services. Post treatment his score dropped significantly. The same thing happened with his depression score, it dropped to zero. The neuro-cognitive tests followed the same pattern, memory, language, executive function all returning to better than normal. Even his workouts improved dramatically.  His results were so significant that they were presented at 4 international medical conferences.

         Current science says there is no cure or effective treatment for CTE, however Larry improved remarkably on almost every measure after participating in the study at the Boston VA. Only 6 weeks of photobiomodulation therapy produced almost miraculous results. As soon as he stopped using the “light” he regressed dramatically. After a couple of months using the Vielight home device he again improved to an amazing extent. Photobiomodulation and Vielight have given us our lives back. I don’t know where we would be right now if we hadn’t found it. It is our hope that this science can help the millions of others who suffer from all kinds of brain injury the way it helped us.

Postscript:

As we were leaving Boston, Larry turned to me and said, “I love football. I’m going to save it from this terrible disease.” And he has worked tirelessly for the last 3 years to do exactly that. He wrote countless letters, made numerous calls and visits to those contacts he had in the college football world. Through his efforts, 2 major universities, Brigham Young University and the University of Utah are studying photobiomodulation and its effects on ex-athletes and current ones as well. Preliminary data, using the same protocol used on Larry at the Boston VA, has proven promising. But even more exciting is the effect “light” is having on individuals who had lost hope of ever being “better.”

Participants from the ex-athlete study at the University of Utah had this to say,

Tyler, “I suffered with depression and suicidal ideation that had me at the breaking point. I was consumed with rage, short-fused and irritable at every turn. It was destroying my closest relationships. I was desperate, and honestly, hopeless when I heard about this study. Since I’ve been using photobiomodulation in my life, temperament and relationships have transformed. I am much more in control of my anger and similar emotions. Most importantly, I actually like my life again.”

Lance, “I have struggled with extreme anxiety and irritability for 20 plus years. After using the treatment for 2 to 3 months I got a call from my business partner. He asked what had happened? He said I was a different person, more patient and calm with less anxiety. I will continue to us the “light” and look forward to continued improvement and the blessings that are coming into my life as a result.”

Gary, “this treatment is necessary for me to have a stable mental state. It has a calming and relaxing effect on my personality. I use to have anger episodes, but I plan on using this treatment for the rest of my life.” Larry Carr, “Can football be saved? Absolutely!”