NFL widows struggled to care for ex-players with CTE. They say a new study minimizes their pain
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.'
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.
Thursdays
Keep up to date on sports with Mike McIntyre's weekly newsletter.
'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.'
___
AP NFL: https://apnews.com/hub/NFL
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Toronto Star
17 hours ago
- Toronto Star
In Uganda, a tougher bicycle offers hope for better health coverage in rural areas
LIRA, Uganda (AP) — The bicycle parked in Lucy Abalo's compound doesn't belong to her. Any one of the hundreds of people in her village can show up and ask to use it. A man might wish to take his pregnant wife for a checkup. A woman might need transport to pick up HIV medication. An injured child might need a trip to a hospital.
Winnipeg Free Press
17 hours ago
- Winnipeg Free Press
In Uganda, a tougher bicycle offers hope for better health coverage in rural areas
LIRA, Uganda (AP) — The bicycle parked in Lucy Abalo's compound doesn't belong to her. Any one of the hundreds of people in her village can show up and ask to use it. A man might wish to take his pregnant wife for a checkup. A woman might need transport to pick up HIV medication. An injured child might need a trip to a hospital. 'The goodness about this bike,' Abalo said, is its availability to all. She is one of dozens of 'village doctors' in rural Uganda who recently were supplied with the Buffalo Bicycle, so called because its steel parts are reinforced to perform in areas with bad roads. World Bicycle Relief, a Chicago-based nonprofit, promotes the Buffalo Bicycle in remote parts of Africa. It collaborates with governments, non-governmental groups and others who use the bikes to improve access to health services. In Uganda, an east African country of 45 million people, efforts to market the bicycle have focused on supporting health workers like Abalo, who visits people's homes and reports any issues to authorities. As a community health extension worker, or CHEW, she has gained the trust of villagers, who can knock on her door in emergency situations. She said she helps to look after about 8,000 people in the area. And at least twice a week, she is required to report to a government-run health center about 5 kilometers (3 miles) away and assist with triaging patients. Ugandan health authorities acknowledge that one challenge for CHEWs is transportation, part of a larger burden of poverty that can leave health facilities lacking ambulances or even gas to move them. World Bicycle Relief, operating locally as Buffalo Bicycles Uganda, has collaborated with Ugandan health authorities since 2023 to equip 331 CHEWs in two of the country's 146 districts. One is Lira, 442 kilometers (274 miles) north of the capital, Kampala. Bicycles have long been ubiquitous, and many families tend to have one. Cultural norms in northern Uganda don't prohibit women from riding. While the roads in Lira town are paved, dirt paths lead into the heart of the district where farming is the main economic activity. The Buffalo Bicycle is a recent arrival. Many have never heard of it, or can't afford it. Retailing for roughly $200, it is three times more expensive than the cheapest regular bicycle — otherwise out of reach for many CHEWs, who do not yet earn a salary. The bike's promoters cite its durability in rough terrain, needing fewer trips to the mechanic as a way to save money. The Buffalo Bicycle's heavy-gauge steel frame is so strong that it comes with a five-year warranty, said Amuza Ali, a monitoring officer in Lira for Buffalo Bicycles Uganda. Abalo and others told the AP the Buffalo Bicycle felt uncomfortable to use in the beginning, with a braking system that doesn't permit carefree backpedaling. 'When I climbed on it, it wasn't that easy as I thought,' Abalo said. 'I was like, 'I am trying again to learn how to ride.'' CHEWs using the bicycles reported a 108% increase in households reached each week, and the time to reach health facilities dropped by nearly half, according to a study published in May by World Bicycle Relief. The study shows that 'mobility is not a luxury in healthcare' but a lifeline, CEO Dave Neiswander said in a statement released for the report. Diana Atwine, permanent secretary at the Ministry of Health, has urged the distribution of bicycles to more CHEWs across Uganda, saying front-line health workers save an unknown number of lives each year. Abalo received her Buffalo Bicycle from the health minister last year. One of her neighbors, Babra Akello, said she has used the bicycle at least six times already. The first was for transport to an antenatal checkup. She praised Abalo's willingness to help. Wednesdays Columnist Jen Zoratti looks at what's next in arts, life and pop culture. The bike has also been used for emergencies. One evening earlier this year, a neighbor's 4-year-old child suffered a deep cut while playing in the dirt. With the child's parents away, Abalo transported the bleeding boy to a facility where he briefly lost consciousness before being revived. 'That bike, not me, saved the life of that child,' Abalo said. 'If that bike hadn't been there, I don't know what would have happened.' ___ For more on Africa and development: The Associated Press receives financial support for global health and development coverage in Africa from the Gates Foundation. The AP is solely responsible for all content. Find AP's standards for working with philanthropies, a list of supporters and funded coverage areas at
Winnipeg Free Press
17 hours ago
- Winnipeg Free Press
UK lawmakers to vote on allowing terminally ill adults to end their lives
LONDON (AP) — British lawmakers are set to vote Friday on whether to back a bill to help terminally ill adults end their lives in England and Wales, in what could be one of the most consequential social policy decisions they will ever make. Members of Parliament supported legalizing assisted dying when they first debated the issue in November by 330 votes to 275. Since then, the Terminally Ill Adults (End of Life) Bill has undergone months of scrutiny leading to some changes in the proposed legislation, which is being shepherded through Parliament by Labour lawmaker Kim Leadbeater rather than the government. Leadbeater is confident lawmakers will back the bill. 'We have the most robust piece of legislation in the world in front of us tomorrow, and I know that many colleagues have engaged very closely with the legislation and will make their decision based on those facts and that evidence, and that cannot be disputed,' Leadbeater said Thursday on the eve of the vote alongside bereaved and terminally ill people. Proponents of the bill argue those with a terminal diagnosis must be given a choice at the end of their lives. However, opponents say the disabled and elderly could be at risk of being coerced, directly or indirectly, to end their lives to save money or relieve the burden on family members. Others have called for the improvement of palliative care to ease suffering as an alternative. The vote is potentially the biggest change to social policy since abortion was legalized in 1967. What lawmakers are voting on The Terminally Ill Adults (End of Life) Bill would allow terminally ill adults aged over 18 in England and Wales, who are deemed to have less than six months to live, to apply for an assisted death. The terminally ill person would have to be capable of taking the fatal drugs themselves. Proponents of the bill say wealthy individuals can travel to Switzerland, which allows foreigners to legally end their lives, while others have to face possible prosecution for helping their loves ones die. How the vote may go The outcome of the vote is unclear, as some lawmakers who backed the bill in the fall only did so on the proviso there would be changes made. Some who backed the bill then have voiced disappointment at the changes, while others have indicated Parliament has not been given enough time to debate the issues. The vote is a free one, meaning lawmakers vote according to their conscience rather than on party lines. Alliances have formed across the political divide. If 28 members switched directly from backing the bill to opposing it, while others voted exactly the same way, the legislation would fail. Timeline if the bill passes Friday's vote is not the end of the matter. The legislation would then go to the unelected House of Lords, which has the power to delay and amend policy, though it can't overrule the lower chamber. Since assisted dying was not in the governing Labour Party's election manifesto last year, the House of Lords has more room to maneuver. Any amendments would then go back to the House of Commons. If the bill is passed, backers say implementation will take four years, rather than the initially suggested two. That means it could become law in 2029, around the time the next general election must be held. Changes to the bill Plenty of revisions have been made to the measure, but not enough for some. Perhaps the most important change was to drop the requirement that a judge sign off on any decision. Many in the legal profession had objected. Now any request would be subject to approval by two doctors and a panel featuring a social worker, senior legal figure and psychiatrist. Changes also were made to ensure the establishment of independent advocates to support people with learning disabilities, autism or mental health conditions and the creation of a disability advisory board. No involvement of health care practitioners It was already the case that doctors would not be required to take part, but lawmakers have since voted to insert a new clause into the bill extending the provision to anyone. The wording means 'no person,' including social care workers and pharmacists, is obliged to take part in assisted dying and can therefore opt out. The government's stance There is clear no consensus in the cabinet about the measure. Prime Minister Keir Starmer has indicated he will back the bill on Friday. His health secretary, Wes Streeting, is opposed but said he will respect the outcome. There are also questions about how it would impact the U.K.'s state-funded National Health Service, hospice care and the legal system. Nations where assisted dying is legal Other countries that have legalized assisted suicide include Australia, Belgium, Canada and parts of the United States, with regulations on who is eligible varying by jurisdiction. Assisted suicide is different from euthanasia, allowed in the Netherlands and Canada, which involves health care practitioners administering a lethal injection at the patient's request in specific circumstances.
