Is it CTE – A Wife’s Perspective

In 2013, my husband Larry was diagnosed with brain damage from years of playing football.  After 10 hours of testing, the psychologist explained that in comparison to the general public for his age, Larry’s scores in the neuropsychological functioning and memory tests were below 25% with some results lower than 10%. The doctor’s report concluded, “Probable head trauma with multiple concussions. Problems with attention and memory are hallmarks of significant brain injury.”

I began to notice changes in Larry about 10 years before our visit with the psychologist. At first it was a change in his speech. He would forget words, which we all do, but he would replace the forgotten word with what I can only describe as “gobbledygook.” Nonsense words, sounds and syllables that shocked those who heard him. I asked him how he handled this at work. He answered that he just stopped talking until either the right word or a replacement came to his mind, but around family or friends, when he felt relaxed, he would just let it go. Sometimes it was more than one word, a complete incomprehensible sentence would escape his lips and I would shrug and say, “He must be talking in tongues.” However, it wasn’t funny. He no longer was able to function as a professor, but even as a PE teacher in middle school, he was always nervous that “it” would happen in front of a class of rambunctious 8^th graders. I can only imagine what that would be like.

 Then I began to see changes in his personality; slowly at first but accelerating quickly in the last few years. Larry began to get very anxious in social settings and suspicious of others around him. I distinctly remember shoe shopping with him a few years ago. He was looking at shoes on a lower shelf when another man, looking at the shelf above, came too close to him and took a shoe only a few inches from Larry’s head. With that Larry quickly stood up, turned around, and red faced declared we had to leave the store. He stomped off ahead of me and when I caught up with him and asked him what happened he said, “That guy was stalking me. Why was he so close?” No amount of explanation that the other man had a right to shop for shoes too seemed to appease him.

 Larry began to become irrational in his thoughts and fears. I couldn’t understand what was going on with him and trying to reason with him was fruitless. We started to decline invitations because social outings made him too nervous and he never forgot a perceived slight. If I complained about someone at work, even though that person was a friend, Larry developed an intense dislike for him or her. It became personal even though it had nothing to do with him. He was agitated and his thoughts were aggressive, though he never physically acted out on those. His emotions began to get the better of him, with outbursts that seemed out of the blue and not related to anything real.  While we were both working, I recognized these changes, but it wasn’t until I retired that I understood them fully.

 Larry’s last few years of teaching were a nightmare. He became obsessed with the idea that his principals were trying to get rid of him. Three principals in a row were the recipients of over 200 memos about anything and everything he saw as a threat either to himself or to the department. He finally retired early because he was convinced the last principal was out to fire him and his impatience with his students was becoming frightening to him.  I continued working for one more year.

A few years prior to our appointment with the psychologist, we saw the movie “Concussion” and the documentary “A League of Denial,” and we both worried constantly that his symptoms were CTE, Chronic Traumatic Encephalopathy. CTE is defined by the Boston University Research CTE Center as “a progressive degenerative disease of the brain found in people with a history of repetitive brain trauma (often athletes), including symptomatic concussions as well as asymptomatic sub-concussive hits to the head.”  This means that it is not only concussions that cause damage, but every collision, every hit that rattles the brain repeated over and over again in the game of football, that causes changes in the brain that can lead to CTE. The symptoms of this progressive disease include anxiety, explosivity, language difficulties, paranoia, obsessiveness, trouble sleeping and depression; a perfect description of my husband. This was not the man I married. I was losing hope.