A 2020 Look at CTE

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Original story posted on: January 27, 2020

The symptoms for CTE include depression, anxiety, explosive anger, suicidal thoughts, and actions.

Today, millions of people are looking over their shoulders. They are doing so because they are being stalked. They are being stalked by their own brain. Their brain is thinking about chronic traumatic encephalopathy (CTE). Sadly, as the truth becomes known about this disease, millions more will also be looking back, hoping not to see the symptoms.

They didn’t know they had done anything that would cause this. They were just living life to the fullest, oblivious to dangers.  Yet many millions more are still doing the very same things today that researchers are saying causes this condition.

It shouldn’t be this way. But it is. Had people only known more about the dangers, they might have acted differently. They would have understood more about the causes. But they didn’t know.

They could have known about all of this back in the 1920s, but back then it was just a thing for boxers: “punch-drunk syndrome,” they called it. They could have known when it was recognized in football players in the late 1930s when the terms “stumblebums” and “stumble backs” were coined. The term “CTE” was first used in 1940 to describe the syndrome. Then, in the 1960s, the issue surfaced again, in a 300-page paper describing the effects of multiple blows to the head in football. That report barely saw the light of day. For reasons we can only imagine, the truth about the effects of repetitive head trauma have been obfuscated, hidden, and denied for decade after decade, and to a large extent, it still is. For those who hid it, the truth will be their stalker.

This is what fuels our mission: to bring awareness to those who may unwittingly place themselves or their loved ones in harm’s way. And for us, “harm’s way” is any activity that delivers repetitive impacts to the head. This includes boxing, football, MMA, hockey, soccer, military training and combat, rodeo, motocross, stunt work, domestic abuse – the list goes on. These impacts do not have to be severe; they just need to be repetitive. Our mission is also to bring awareness to the special needs of those who are suffering from symptoms of CTE. And our mission is to support research to examine the prevalence of CTE – and for a cure.

So, what does this “stalker” look like? What are the symptoms of CTE?

When we look at the factors cited in the ICD10monitor news post of Jan. 23,2018, by Laurie M. Johnson, we see that “CTE is coded as post-concussion syndrome, which is F07.81.” There is also an outline of CTE’s associated symptoms: post-traumatic headache, dizziness, vision problems, confusion, cognitive impairment, and mild memory disturbance.

We are not medical professionals. We have no working knowledge of the world of coding, but we have been careful to separate the word “concussion” from any discussion of CTE. A concussion is an injury to the brain; CTE is a disease of the brain. One hard hit to the head can cause a concussion. A thousand or so moderate hits to the head can cause CTE. Science shows that a person can develop CTE without ever sustaining a concussion. Science has yet to show that a person can develop CTE without a history of repetitive hits to the head.

Our experience has shown that a list of symptoms for CTE must also include depression, anxiety, explosive anger, suicidal thoughts and actions, paranoia, disturbed sleep patterns, and impaired judgment – the list goes on. These words and their clinical codes on paper really do not paint a complete picture of the cautionary tale we are trying to shout from the rooftops.

Researchers are at a huge disadvantage with this disease, since they have to work backwards; it can only be diagnosed post-mortem. From the specially prepared slides of brain tissue, a trained eye can see the discoloration caused by tao clumps and tangles, unique telltale signs of CTE. With a positive diagnosis, we can then go back and piece together the symptoms of the deceased.

So many young athletes, veterans, and sports stars have been diagnosed with CTE  after suicide, drug overdose, or violent death. The recent Netflix series on Aaron Hernandez takes the viewer through the life of this gifted athlete as he unravels and becomes unwired. Too little time in the series was devoted to the number of hits Aaron sustained from his early childhood and throughout his lifelong football career. If we could go back and count them, we would find tens of thousands of hits. His paranoia was beyond measure, and his anger cost him everything. The symptoms of CTE are brutal and relentless, and occur in multiples. Very few, if any, can suffer this disease gracefully, because your brain is unwiring the essence of the person you are.

We are losing more people to suicide than we are to homicide each year in this country, by a factor of two to one. An average of 20 military veterans commit suicide each day. If we were able to get a special autopsy for each of these people, we would see a lot more CTE. We cannot yet see the prevalence of this disease, however, because we are not looking for it in a comprehensive way.

For those millions of people who have accumulated multiple sub-concussive blows through their chosen sport, or service, or activity, the realization of the possibility of CTE for them can be frightening.

For our part, we find our motivation in knowing that research is moving very fast. Scientists are very close to finding a way to diagnose CTE among the living. There are some things being done with great promise for alleviating symptoms, and there is hope for a cure or stopgap measure within the foreseeable future. As for today, the best strategy available to us is prevention. CTE is 100 percent preventable. Take away the hitting, and you eliminate the risk of CTE.

As for that stalker? Well, as we age, we all lose our keys from time to time, and occasionally we lose our temper, our train of thought, and a whole host of other things. But rather than looking over your shoulder, learn more about CTE. Knowledge trumps fear. Support and provide love for those families that may be dealing with CTE. Share knowledge and help others understand the fragility and importance of our brains. We must protect future generations from having to look over their shoulders. Let’s look forward together. 

Programming Note: Listen to Karen Kinzle Zegel report this story live today during Talk Ten Tuesdays, 10-10:30 a.m. EST.

Karen Kinzle Zegel

Karen Zegel is the mother of Patrick Risha, an all-conference running back and high school football star in Pennsylvania, and at Dartmouth College. Patrick suffered from CTE before he took his own life at the age of 32. Ms. Zegel is now president of the Patrick Risha CTE Awareness Foundation. Along with the informative website, StopCTE.org, the foundation works to provide parents of school age children (who have very susceptible brains) with information about the dangers of sports which involve head trauma. The foundation also works to open the avenues for brain donations for research and awareness. And the foundation is also striving to increase awareness of the prevalence of CTE in our society, in ex-athletes, veterans, and victims of domestic abuse. 

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