This Is Not Just Another CTE Story

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.

3 thoughts on “This Is Not Just Another CTE Story

  1. Hi Larry,

    Thanks so much for your post this week. I feel ashamed that I never knew about your condition ….even with our multiple reunions with the team, I somehow never heard your story!

    Also I never knew they could diagnose CTE without the suspected patient having their brain examined.

    I admire every avenue you’ve taken to find a solution for all you and Laurie have experienced. I am so happy to read this morning that you have found some form of a solution to possibly help reverse the damage this horrible condition has brought you. I’m so glad that Laurie had the strength and fortitude to find the facility in Boston that helped shine a light on your situation.

    I hope you continue to find improvements in both of your lives that not only help you guys but others as well.

    Unless they find and develop some incredible helmets that can deny this condition from even starting, Football has got to change or maybe even go away. I don’t see how Mothers can continue to deny this possibility exists.

    Regards,

    Larry Megugorac

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  2. Through my girlfriend I reached out to Larry.

    He is a very compassionate and caring man. Like many former players I am in the Boston University study.

    She forwarded an article written about Larry last week to me. The article brought me to my knees. I felt like I was reading a story about myself. The symptoms, the thoughts all the same things I had been experiencing since my mid 40’s. I’m 53 now. When I say it was like reading about me I mean it was identical. I sobbed over the article and found it difficult to get through. It was that question Dr Stern asked Larry that broke me. “Larry, how often do you think about suicide?” Larry’s answer would and is my answer. “Everyday.”

    I sit here now in this response thinking about suicide. There is but one reason I can’t do it. My son. I have 3 children but a relationship only with 1. My 15 year old son is my best friend and at this point my hero.

    I was married for 20 years and my wife left me about a year and a half ago. My divorce will be final May 16th. In my divorce filing the section of why the marriage is irretrievably broken explains and uses the term CTE.

    I’ve lost everything and rapidly losing hope. I’ve lived in my car. I’ve stolen food going days without food. My church, friends & former teammates have abandoned me. I’ve cried out for help. I attempted suicide in December 2017 and found myself in a mental hospital.

    The people at Boston are well meaning people but are of little help. In some ways I understand their trepidation in offering treatments. They have some big sharks who want them destroyed, NFL, NHL etc… Where I can’t give them a pass is that they knew who they were taking on when they jumped into the deep end of this horrific disease.

    Larry responded to me almost immediately. We spoke on the phone for an hour and he another hour with my girlfriend. Maybe there was hope. Larry is working hard for me to help find some relief. I sit in a borrowed camper on a farm in south Florida everyday. No hope no answers until that contact with Larry.

    Let me say this. CTE is real. I’ve been around too many guys like me in various states of the disease. Guys who are in lighter stages all the way to the funerals of ex teammates or players.

    I hope that I will be able to try the machine Larry uses sooner rather than later. The cost is an obstacle and I will need to raise that money some how. I know I’m willing to do anything at this point. I can’t go on like this. The headaches, the feelings of failure at the end of everyday, the night terrors. Most people love sunsets. I hate them. It means if I wake up the next day I’ll do this all over again. It’s debilitating. It’s killing me.

    I want to give a special acknowledgment to Larry’s wife, Laurie. I’ve not met her or ever spoken to her but I know she isn’t a quitter. She’s hung in there and I can’t begin to explain how important that is.

    The easy way out is to quit on a person. She loved him enough to fight with him not against him.

    For now the war continues. Few answers and great outside resistance. We need courageous people like Larry to scream from the mountains about the disease and the desperate Military Veterans, athletes and others who suffer through it.

    If you are one of these or know someone who is, please speak!!! Speak until they listen. We need help. Lives are depending on it.

    Thank you Larry and Laurie. You’re providing hope.

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  3. Larry, it’s been almost 50 years since we last spoke, but you were always someone I admired even though we weren’t really buddies.
    Even though I played basketball instead of football I too sustained a couple of severe concussions. Fortunately I have not had the tribulations you experienced all these years. I pray that the light you referenced will shine brighter and brighter as you pursue healing. I will be praying for you and your family for strength and patience.

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