NFL widows struggled to care for former players with CTE. They say a new
study minimizes their pain
[June 20, 2025]
By JIMMY GOLEN
BOSTON (AP) — Dozens of widows and other caregivers for former NFL
players diagnosed with CTE say a published study is insulting and
dismissive of their experience living with the degenerative brain
disease that has been linked to concussions and other repeated head
trauma common in contact sports like football.
An open letter signed by the players’ wives, siblings and children says
the study published in the May 6 issue of Frontiers in Psychology
suggests their struggles caring for loved ones was due to “media hype”
about chronic traumatic encephalopathy, rather than the disease itself.
The implication that “caregiver concerns are ‘inevitable’ due to
‘publicity’ is callous, patronizing, and offensive,” they said.
“The burden we experienced did not happen because we are women unable to
differentiate between our lived experience and stories from TV or
newspaper reports,” they wrote in the letter. “Our loved ones were
giants in life, CTE robbed them of their futures, and robbed us of our
futures with them. Please don’t also rob us of our dignity.”
The pushback was led by Dr. Eleanor Perfetto, herself a medical
researcher and the widow of former Steelers and Chargers end Ralph
Wenzel, who developed dementia and paranoia and lost his ability to
speak, walk and eat. He was first diagnosed with cognitive impairment in
1999 — six years before Pittsburgh center Mike Webster’s CTE diagnosis
brought the disease into the mainstream media.
“My own experience, it just gave a name to what I witnessed every day.
It didn’t put it in my head,” Perfetto said in an interview with The
Associated Press. “It gave it a name. It didn't change the symptoms.”
The study published last month asked 172 caregivers for current and
former professional football players “whether they believed their
partner had ‘CTE.’” Noting that all of the respondents were women,
Perfetto questioned why their experiences would be minimized.
“Women run into that every day,” she said. “I don't think that's the
only factor. I think the motivation is to make it seem like this isn’t a
real issue. It’s not a real disease. It’s something that people glommed
on to because they heard about it in the media."
Hopes for study ‘quickly turned to disappointment’
The letter was posted online on Monday under the headline, “NFL
Caregivers to Harvard Football Player Health Study: Stop Insulting Us!”
It had more than 30 signatures, including family of Hall of Famers Nick
Buoniconti and Louis Creekmur.
It praises the study for examining the fallout on loved ones who
weathered the violent mood swings, dementia and depression that can come
with the disease. The letter says the study gets it wrong by including
what it considers unsupported speculation, such as: “Despite being an
autopsy-based diagnosis, mainstream media presentations and high-profile
cases related to those diagnosed postmortem with CTE may have raised
concerns among living players about CTE."
The letter said these are "insulting conclusions that were not backed by
study evidence.”
“Rather than exploring the lived experiences of partners of former
athletes, they instead implied the partners’ anxiety was caused by
watching the news ... as if the media is to blame for the severe brain
atrophy caused by CTE in our loved ones," they wrote.
Study authors Rachel Grashow and Alicia Whittington said in a statement
provided to the AP that the goal of their research is “to support NFL
families, especially those caring for affected players or grieving for
lost loved ones.”
“We regret if any of our work suggested otherwise,” they said. “Our
intent was not to minimize CTE — a disease that is far too real — but to
point out that heightened attention to this condition can intensify
existing concerns, and that symptoms attributed to CTE may, in some
cases, stem from other treatable conditions that also deserve
recognition and care.”
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Ralph Wenzel, (62) football player for the Pittsburgh Steelers,
1970. (AP Photo, file)
 But Perfetto feared the study was
part of a trend to downplay or even deny the risks of playing
football. After years of denials, the NFL acknowledged in 2016 a
link between football and CTE and eventually agreed to a settlement
covering 20,000 retired players that provided up to $4 million for
those who died with the disease. (Because it requires an examination
of the brain tissue, CTE currently can only be diagnosed
posthumously.)
“Why would a researcher jump to ‘the media’ when trying to draw
conclusions out of their data, when they didn’t collect any
information about the media,” Perfetto told the AP. "To me, as a
researcher, you draw the implications from the results and you try
to think of, practically, ‘Why you come to these conclusions? Why
would you find these results?’ Well, how convenient is it to say
that it was the media, and it takes the NFL off the hook?”
‘By players, for players’
The caregivers study is under the umbrella of the Football Players
Health Study at Harvard University, a multifaceted effort "working
on prevention, diagnostics, and treatment strategies for the most
common and severe conditions affecting professional football
players.” Although it is funded by the NFL Players Association,
neither the union nor the league has any influence on the results or
conclusions, the website says.
“The Football Players Health Study does not receive funding from the
NFL and does not share any data with the NFL,” a spokesperson said.
Previous research — involving a total of more than 4,700 ex-players
— is on topics ranging from sleep problems to arthritis. But much of
it has focused on brain injuries and CTE, which has been linked to
contact sports, military combat and other activities that can
involve repetitive head trauma.
When he died with advanced CTE in 2012 at age 69, Wenzel could no
longer recognize Perfetto and needed help with everyday tasks like
getting dressed or getting out of bed — an added problem because he
was a foot taller and 100 pounds heavier than she is. "When he died,
his brain had atrophied to 910 grams, about the size of the brain of
a 1-year-old child,” the letter said.
Former Auburn and San Diego Chargers running back Lionel “Little
Train” James, who set the NFL record for all-purpose yards in 1985,
was diagnosed with dementia at 55 and CTE after he died at 59.
“Treatable conditions were not the reason Lionel went from being a
loving husband and father to someone so easily agitated that his
wife and children had to regularly restrain him from becoming
violent after dodging thrown objects,” the letter said. “They were
not likely to be the driving force behind his treatment-resistant
depression, which contributed to alcoholism, multiple stays in
alcohol rehabilitation treatment centers, arrests, suicidal
ideation, and ultimately, his commitment to a mental institution.”
Kesha James told the AP that she would disable the car to keep her
husband from driving drunk. She said she had never spoken of her
struggles but chose to tell her story now to remove the stigma
associated with the players' late-in-life behavior — and the
real-life struggles of their caregivers.
“I have videos that people probably would not believe,” James said.
“And I’ll be honest with you: It is nothing that I’m proud of. For
the last three years I’ve been embarrassed. I’m just going public
now because I do want to help bring awareness to this — without
bringing any shame to me and my kids — but just raise the awareness
so that no other family can experience what I did."
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