We are told there is no official diagnosis, cure or even an effective treatment for the neurodegenerative disease CTE, Chronic Traumatic Encephalopathy. Because of this bleak reality, people are turning their backs on the personal stories chronicling the effects of this devastating condition. After all, who wants to keep hearing about athletes killing themselves, or their divorces and their addictions, much less what could happen to the game of football itself, without offering any hope for the millions who wait to see if they will be next. Even some parents who used to worry about their own kids playing the sport now simply look the other way and choose to believe the growing number of deniers. It’s a lot easier than admitting you might be encouraging your kid to play something that may result in brain damage and a compromised intellectual potential.
My story could change the discussion. I love football and I have been torn since being diagnosed with brain damage and possible CTE in 2011. In 2016, my wife, Laurie and I we were living in Boston, doing genealogical work for our church. My symptoms of CTE were escalating. I had hoped by serving in this capacity I would feel better, but I did not, in fact it got worse, much worse. Every morning I would wake up with my insides in turmoil and I would worry about what might happen to set me off. Knowing that when “it,” a combination of anxiety, stress, fear, anger and inner rage, would attack, I would be powerless to stop it. It was reflexive. When triggered, heat would at once consume my entire being and Laurie would know immediately when the dark cloud descended. It was like some powerful unknown force took over while I watched helplessly the disaster in the making unfold. I knew what was happening, I understood it and I knew how upset it made my wife. However, I had absolutely no ability to stop what ever was controlling me. I knew Laurie couldn’t deal with this much longer, but I couldn’t stop! Eventually it would pass, just slowly dissipate away over hours, sometimes days, and then the shame and regret would take over. We were living on the edge.
During this time, my wife and I were able to meet with Ann McKee MD, Robert Stern PhD, and finally Robert Cantu MD, the major faces of CTE research. All were kind and supportive, but offered no real hope. Each reaffirmed that there is no treatment for CTE, but none of them discounted my “self-diagnosis” of the disease, noting that the symptoms I described, “were consistent with those individuals and families” they dealt with. Dr. Stern at one point in our conversation asked my wife point blank, “Why are you still here,” suggesting many wives end up leaving marriages due to the stress and conflict the disease creates. It was sometime following those meetings, and at my lowest point, I emailed Dr. McKee in desperation and said my wife and I were in complete despair, “is there anything we can do?” She returned my email and told me about a colleague of hers who was having success treating Gulf War Illness in Vets also suffering with PTSD. Initially I had little interest, but the suggestion came from Dr. McKee so I had to check it out.
To make a long story short, I was impressed with the research and success they were having in a number of areas and I entered the study. I became the 1st football player (patient X) with probable CTE and began 8 months of treatment that included a series of testing, treatment, more testing, withholding treatment and even more testing. My results were very positive and exceeded anything the researchers had even hoped for, and have been presented at 3 medical conferences the past year. This was not a diet, exercise, yoga, or the latest fad being marketed by the corner medical guru. It was real science involving a known technology studied by highly educated researchers in a controlled environment. It was/is a passive treatment that included pre and post testing with fMRI and complete neuro-psych testing at each phase. I will discuss the treatment technology and all the results in detail in later posts.
I believe my experience in Boston is quite significant and holds promise for more people like me, if not for the game of football itself. We may have to now rethink the statement; “there is no effective treatment for CTE” (or dementia, Alzheimer’s, PTSD, stroke and other brain diseases and injuries). In my case significant improvements were seen across the full range of neuro-cognitive testing. Additionally, the fMRI results mirrored the other tests and correlated with the changes on my neuro-psych and cognitive results. The possible applications of this technology are enormous. I cannot say it is a cure (because I regressed when treatment was withheld); but it has saved my marriage and my life.
CTE stole a good part of the last 30 years of my life, time I can never get back. It forced me into early retirement costing me tens of thousands of dollars and created way too much conflict and unhappiness. I believe I found an intervention; not the NFL, Lawyers, or Universities, I found it. That may sound a little boastful, but it seems like so few are really looking.
This is my story.