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CTE dementia

The Peril of Contact Sports: One Family’s Story of CTE, a Disease Impossible To Diagnose

By Nicholas Chan | May 17th, 2021

Even though developing brain-trauma related neurodegenerative disease CTE is a risk for professional impact-sport athletes, there is still no way to diagnose it in living patients, leaving families currently navigating CTE-suspected dementia without targeted treatment. 

Former soccer player Bill Gates was known for his headers during his career with the Middlesbrough Football Club from 1961 to 1974. At daily practices, he was expected to hit the ball with his head up to 100 times in a single practice. He regularly suffered from migraines and often relied on smelling salts to get by. After 13 years and 333 games, he left his career on the field to preserve his health, and to build a business selling sportswear and sporting equipment. 

For roughly a decade after Bill’s retirement from professional soccer, however, the migraines from his days on the field continued. In his sixties, he began to develop cognitive problems which eventually progressed to dementia.  

“This has been a 10-plus year journey from the very first symptoms,” Judith Gates said of her husband Bill in a LiveTalk with Being Patient, “from a man who was can-do get-go, had built up a very thriving business in the United Kingdom, was never fazed by anything, thought that he could take on any challenge, to somebody who forgot what he was doing, couldn’t plan what he was doing, became increasingly dependent and reliant upon family members, and an absolute shadow of his former self.” 

In 2017, he received a diagnosis of dementia due to probable CTE (chronic traumatic encephalopathy). But no one can say with absolute certainty just what is happening in Bill Gates’s brain. And, there are no treatments available to slow the progression of the disease. 

Increasingly, evidence has shown that people exposed to repetitive head impacts over time, often athletes, are at increased risk of developing degenerative brain diseases such as CTE, which can lead to cognitive and behavioral symptoms. But to date, a definitive CTE diagnosis can only be made at autopsy, thus hindering efforts to develop targeted therapies to treat or prevent the disease for former athletes at risk for developing the disease.

While research in CTE is still in its early stages and much remains unknown about the disease, there is reason for optimism: As more scientists are studying CTE and the consequences of head traumas in the past decade or so, they are making headway in developing biomarkers, diagnostic tools and criteria that will help experts diagnose the disease during life, which could one day mean targeted treatments for people like the Gates family. 

This spring, in a paper published in Neurology, experts developed the first consensus criteria for diagnosing the symptoms linked to CTE pathology. According to the authors, these criteria will allow researchers to better understand the symptoms, progression, prevalence and risk factors of the disease. 

The First Step Toward Diagnosing CTE in Living Patients

According to the paper’s co-author Dr. Charles Bernick, even though the criteria aren’t designed for clinical use, they can help researchers take important steps toward diagnosis, treatment, and gain a clearer picture of how the disease affects patients. 

“We don’t know how this criteria really works in [a] real life population of people,” Bernick, a neurologist and primary investigator of the Professional Athletes Brain Health Study at Cleveland Clinic Lou Ruvo Center for Brain Health, told Being Patient. “That’s one of the areas of research, but at least this can be very useful as we study people over time or think about doing clinical trials.”

Researchers may now use these criteria to recruit and categorize participants for longitudinal studies, and to design clinical trials for symptomatic and disease-modifying therapies, he explained. “We now have a way to identify or describe a population with certain features that we believe are correlated with CTE pathology.” 

According to Bernick, the next steps include adding biomarkers to the criteria measured by diagnostic tools like brain MRI and PET scans, and even blood tests. 

In the meantime, for people experiencing cognitive and behavioral symptoms of head traumas, today, their options include certain medications that Bernick said may improve quality of life; general lifestyle interventions like the mediterranean diet, regular aerobic exercise, mindfulness techniques, proper sleep and social engagement are all helpful strategies to preserve brain health. 

Extending Bill’s Legacy

For Judith Gates and her family, they are doing what they can to support Bill in maintaining his independence to the extent possible, helping him contribute to daily tasks.

“He’s still my life partner, my son’s dad, my granddaughter’s granddad — much loved on all of those fronts,” she said. “We’re trying to help him feel good by working with him and trying to see things through his eyes.

“What he is able to do, we support him in doing and help him to continue doing it, and then we thank him for doing it so that he has a sense of his personal worth [and] his ongoing contribution to the family to whom he has already given so much.” 

Judith has promised her husband that she would not only help optimize his life, but also to be part of the solution in addressing neurodegenerative diseases in former professional soccer players. By co-founding the charity Head for Change, Judith and fellow founders are seeking to support independent research in brain injuries and CTE as well as measures to protect players from head traumas. The organization is also aiming to support individuals and families impacted by neurodegenerative diseases thought to be due to their sporting careers. 

“Once we launched, we received many communications from family members who said, ‘We feel so alone. We feel that no one cares,” she said. “’We’ve been given a diagnosis and we are left to get on with it.’”

Head for Change has launched a support group for family members of affected players. It is also providing resources and advice to help them navigate the manifold challenges the follow a dementia diagnosis.

“We hope by doing that, we remove the feeling of ‘I am so alone,’” Judith said, “and that we also encourage people to look at positives on the basis of not everyday is good, but let’s find what’s good in everyday.”

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