NFL widows struggled to care for former players with CTE. They say a new study minimizes their pain.

Boston (AP) A published study, according to dozens of widows and other caretakers for former NFL players with CTE diagnoses, is demeaning and contemptuous of their experience dealing with the degenerative brain disease, which has been connected to repeated head trauma from contact sports like football.

According to an open letter signed by the players’ spouses, siblings, and kids, the study that was published in Frontiers in Psychology’s May 6 issue implies that the players’ difficulties in caring for loved ones were caused more by the media’s exaggeration of chronic traumatic encephalopathy than by the illness itself. They felt it is rude, condescending, and insensitive to suggest that caregiver worries are unavoidable because of exposure.

They wrote in the letter, “The burden we endured did not occur because we are women unable to distinguish between stories from TV or newspaper reports and our lived experience.” CTE stole our loved ones of their futures and us of our futures with them; they were giants in life. Don’t deprive us of our dignity either, please.

Dr. Eleanor Perfetto, a medical researcher and the widow of former Steelers and Chargers end Ralph Wenzel, spearheaded the opposition. Wenzel lost his ability to walk, talk, and eat due to dementia and paranoia. Six years before Pittsburgh center Mike Webster’s diagnosis of CTE brought the illness to the attention of the general public, he was initially diagnosed with cognitive impairment in 1999.

My personal experience just provided a name to what I saw on a daily basis. In an interview with The Associated Press, Perfetto stated, “It didn’t put it in my head.” It named it. The symptoms remained the same.

172 caregivers of current and former professional football players were questioned if they thought their partner had CTE in a research released last month. Perfetto asked why women’s experiences would be downplayed, pointing out that all of the responders were female.

According to her, women encounter that on a daily basis. That isn’t the sole factor, in my opinion. The goal, in my opinion, is to give the impression that this is not a serious problem. It’s not an actual illness. People became interested in it after hearing about it in the media.

Hopes for study quickly turned to disappointment

The letter, titled NFL Caregivers to Harvard Football Player Health Study: Stop Insulting Us!, was uploaded online on Monday. The families of Hall of Famers Nick Buoniconti and Louis Creekmur were among the more than thirty people that signed it.

It commends the study for looking at the effects on family members who survived the severe mood swings, dementia, and depression that can accompany the illness. According to the letter, the study is flawed because it includes what it deems unsubstantiated conjecture, such as: Although CTE is an autopsy-based diagnosis, high-profile cases involving individuals who were postmortem diagnosed with the disease may have caused living athletes to become concerned about CTE.

These are derogatory findings that were not supported by research evidence, the letter claimed.

As if the media were to blame for the catastrophic brain shrinkage caused by CTE in our loved ones, they wrote, rather than delving into the actual experiences of spouses of former athletes, suggesting that the partners’ concern was brought on by watching the news.

In a statement given to the AP, study authors Rachel Grashow and Alicia Whittington stated that their research aims to assist NFL families, particularly those who are grieving for departed loved ones or are caring for impacted athletes.

They responded, “We apologize if any of our work suggested otherwise.” Our intention was not to downplay the severity of CTE, a disease that is all too real, but rather to draw attention to the fact that increased awareness of it might exacerbate pre-existing issues and that symptoms typically associated with CTE can actually be caused by other curable disorders that should also be taken seriously.

Perfetto, however, was concerned that the study was a part of a movement to minimize or even reject the dangers of playing football. Following decades of denials, the NFL finally agreed to a settlement in 2016 that covered 20,000 retired players and gave up to $4 million for individuals who passed away from CTE. (At this time, CTE can only be diagnosed after death because it necessitates a brain tissue study.)

Perfetto asked the AP why a researcher would turn to the media when attempting to make inferences from their data if they had not gathered any information about the media. As a researcher, I believe that you should consider the practical ramifications of the findings and try to figure out why you arrived at these conclusions. Why would you discover these outcomes? So, how easy is it to blame the media and absolve the NFL of responsibility?

By players, for players

The research of caregivers is under the purview of Harvard University’s Football Players Health research, a comprehensive initiative focusing on prevention, diagnosis, and treatment approaches for the most prevalent and serious illnesses impacting professional football players. According to the website, despite receiving funding from the NFL Players Association, neither the league nor the union have any input in the findings.

According to a spokeswoman, the NFL does not sponsor the Football Players Health Study and does not receive any data from it.

More than 4,700 former players participated in earlier studies on subjects ranging from arthritis to sleep issues. However, a large portion of it has been on brain damage and CTE, which has been connected to recurrent head trauma in contact sports, military combat, and other activities.

Wenzel was unable to identify Perfetto when he passed away in 2012 at the age of 69 from advanced CTE. He required assistance with daily activities like getting out of bed and dressing, which was made more difficult by the fact that he was 100 pounds heavier and a foot taller than she was. According to the letter, his brain had shrunk to 910 grams at the time of his death, which is roughly the size of a one-year-old child’s brain.

Lionel Little Train James, a former running back for the Auburn and San Diego Chargers who set the NFL record for all-purpose yards in 1985, passed away at the age of 59 after being diagnosed with dementia at the age of 55 and CTE.

The letter claimed that Lionel’s transformation from a devoted husband and father to someone who became so easily angered that his wife and kids had to frequently stop him from acting violently when he ducked thrown objects was not caused by treatable diseases. His treatment-resistant depression, which led to alcoholism, several hospitalizations in alcohol rehabilitation treatment facilities, arrests, suicide thoughts, and, eventually, his confinement to a mental institution, was probably not caused by them.

To prevent her husband from driving while intoxicated, Kesha James told the AP that she would turn off the vehicle. She claimed that although she had never talked about her difficulties, she decided to share her tale now in order to dispel the stigma attached to the players’ late-life behavior and the actual difficulties faced by their caretakers.

James remarked, “I have videos that people probably wouldn’t believe.” And to tell the truth, I’m not proud of anything. I’ve been ashamed for the past three years. I’m going public now because I want to help raise awareness of this so that no other family has to go through what I did, without putting myself or my children in any kind of shame.