As I mentioned in my last blog post, Larry was the first ex-football player to be studied extensively as part of the Boston VA study using photobiomodulation (PBM) as a treatment for brain damage and possible CTE. As part of the study, he went through more neurocognitive testing to establish a baseline, and he had a pre-treatment fMRI to evaluate my brains synchronicity. The therapy, or treatment consisted of using a light emitting device directly on his head 3 times a week, 45 minutes a session for 6 consecutive weeks. I asked how much of that red or near infrared light actually penetrates the skull. Dr. Naeser said only a small percentage, but that it was enough to produce positive effects, not only with Gulf War Vets, but there are case studies using this treatment with Alzheimer’s and dementia patients as well, with encouraging results.
Since Larry was the first ex-football player to use this treatment, no one had any idea what, if anything would happen. However, I knew within the first couple of weeks that something was changing. By week 2 Larry seemed calmer, more peaceful. He didn’t seem as agitated, and if I said something that bothered him, he was able to let it go rather than brood about it and recycle it for days. Because he has a Ph.D. in Exercise Physiology, the scientist in him thought it might be a placebo effect and he wasn’t as excited as I was. But by the 4th week of treatment I knew without a doubt that it was working and even Larry was hopefully optimistic. We hadn’t argued in weeks and he seemed happy for the first time in a very, very long while.
The protocol for the study was that Larry would have a post fMRI and more cognitive testing at the end of the 6 weeks of treatment to see if the improvements we saw were real. The results of those tests were astounding! Dr. Naeser could hardly hide her excitement as we went over the results. There was marked improvement in every area: PTSD and depression scores (we didn’t even know he had these before the study began) improved to an astonishing degree. Prior to treatment Larry’s PTSD was high for a returning Gulf War Vet (he has never served in the armed forces) and now it was normal. His score for depression which had been high, was now near zero. Where the first fMRI’s were dark, indicating a lack of connectivity between different parts of the brain, the 2nd was lit up so much that even a lay person like me could see the difference. The changes were beyond anyone’s expectations and the energy around the table as we continued to go over the results was electric.
Then Dr. Naeser explained the next step of the study. As part of the protocol used on Vets, Larry would go off treatment for the next 8 weeks and then return for more fMRI’s and testing. This was to see if the results of the first 6 weeks of treatment would last. Then we could purchase a similar headset and begin home treatment if we wanted to. I was extremely nervous about this part of the study. I absolutely did not want to go back to where we were before we found the VA. It had been so painful for me, for both of us, for so long and the last 6 weeks had been so peaceful, I dreaded the thought of starting all over again. Or worse, I worried that once he went off treatment, it would never be the same again. I thought he might permanently lose all the gains he had made.
I couldn’t get the story “Flowers for Algernon,” by Daniel Keyes, off my mind. It was made into a move called “Charlie,” in 1968. The premise of the story was that scientists had found a way to enhance the brain function of a mouse named Algernon. A mentally challenged maintenance worker at the lab named Charlie was the first human to try the treatment. He became a genius almost overnight. However, as Algernon the mouse began to lose his abilities, Charlie watched in horror knowing his intellectual gains were only temporary. Would Larry’s gains be only temporary as well?
I’m not going to lie, the next weeks were hard. After a month or so, I knew we were headed in the wrong direction. Larry became easily agitated again, nervous, suspicious and overly emotional. We were bickering, I was walking on eggshells, and I didn’t see how we could last the whole 8 weeks with no treatment. I told Dr. Naeser so. She said not to worry, if he couldn’t make it that long, we could begin in-home treatment whenever we needed to. We purchased the light emitting headset immediately from Vielight out of Canada, and it sat there on the dresser taunting me as every day seemed harder than the one before.
Still I was surprised at how poorly I was handling this phase of the study. Knowing how good it was before, made it all the harder to go back to the way it was, and I had a few emotional outbursts of my own during this period of time. Larry insisted he wanted to stay off the treatment as long as possible. As a scientist, he wanted to see the true progression of the therapy. If it were a degenerative disease like CTE, Alzheimer’s or dementia the results would be fleeting. If it were TBI (traumatic brain injury) from past concussions, Dr. Naeser found from her work with Vets, that the results not only lasted, but improvement continued even off treatment. Finally, it was an out of control traffic incident that convinced Larry he needed to begin using the device at home before the 8 weeks were up. At about week 7, both my adult son and I could hardly keep Larry in the car when a pedestrian in Boston traffic egged him on. That scared us all and the very next day we called the VA.