Widow of NFL Great with CTE Teams Up with Famed 'Concussion' Doctor To Raise Awareness About the Disease: 'We Have to Get the Information Out There'

This Sunday, Tia McNeill – along with millions of other football fans around the world – will be shouting at her TV screen as the Carolina Panthers and the Denver Broncos battle it out in the Super Bowl.

Only for Tia, this NFL championship game is going to be different.

"It's going to be hard to watch," she tells PEOPLE. "It's going to be very hard."

For good reason.



Last November, Tia's former husband Fred McNeill – the one-time star linebacker with the Minnesota Vikings – died after spending years struggling to make sense of the world after his brain was damaged from the countless blows to the head he received during his 12 years in the NFL.

Now, his widow is trying to raise awareness about the degenerative neurological disease – known as chronic traumatic encephalopathy (CTE) – brought on by repeated brain trauma, in the hopes that other NFL players' families will be spared the years of pain and uncertainty that she and her two sons were forced to endure.

"At first, we didn't know what was going on with Fred," explains Tia, who has joined forces with Dr. Bennet Omalu, the forensic pathologist credited with finding the disease in football players. "We all thought it was depression at first."

McNeill, a former star player with UCLA who later played in two Super Bowls, began attending law school during his final year in the NFL. After retiring from pro football in 1985, he graduated at the top of his class and eventually went to work at a Minneapolis law firm, where he soon became a partner.

But by 1996, McNeill's mind began to fall apart. "He couldn't keep up with the workload and all the time-sensitive tasks involved," recalls Tia. Before long he'd been fired from the firm and soon began drifting from one law-related job to the next. Tia was soon forced to take over handling the family's finances from her always-responsible, conscientious husband as his ability to handle the daily stresses of life began to crumble.

It was during this time that his "calm, everything's OK" personality began to change. "Nothing used to ruffle his feathers, but it got to where I would say the littlest things and it would set him off," recalls Tia, who eventually grew so exhausted with her husband's increasingly unpredictable behavior that the couple separated in 2007 – although she continued taking care of her ex until his death.

Alarmed by her husband's cognitive decline, Tia eventually found her way to Dr. Omalu, who inspired the recent movie Concussion, starring Will Smith, in 2011 after she began combing the internet for answers and read about his research.

"I cold called him and he called me back," says Tia. "Before long, he was finishing my sentences. He understood perfectly what was going on."

McNeill spent most of his final days in an assisted-living facility, surrounded by 80- and 90-year-old patients, most of who were also suffering from dementia. Although Tia is convinced that her husband "never fully understood" what was wrong with him, he would sometimes tell people: "I have an injury from football. I shouldn't have used my head [when tackling]."

McNeill, who was diagnosed with Lou Gehrig's disease in 2014, tested positive for CTE in a pioneering UCLA study several years before his death. Of the handful of players in the study, which included Hall of Famer Tony Dorsett [who was also found to have signs of CTE], McNeill was the first to die.

That allowed researchers, who included Omalu, to learn if their initial detection of the disease – which usually can only be confirmed after death – was accurate. During a posthumous examination doctors confirmed that McNeill's brain contained the telltale markers for CTE, meaning that he'd become the first player to be accurately diagnosed with the disease while still alive.

"I think this is a very important, encouraging milestone in our continuing efforts to better understand this disease and someday develop some kind of treatment and cure," Omalu tells PEOPLE.

To date, approximately 90 former NFL players have tested positive for the debilitating disease, with additional cases being confirmed each week.

"I'm not looking for anyone to admit fault," says Tia, who recently joined the advisory board for the Bennet Omalu Foundation. "This is a new disease and it isn't going away. We have to get the information out there."

Tia envisions a day where NFL families won't be forced to spend torturous years searching to answers when their loved ones begin exhibiting the cognitive deterioration associated with CTE – like hers was. "I felt so alone, isolated and helpless," Tia says, stressing the need for treatment centers where afflicted players could one day go for medical care.

"Fred isn't going to be the last player to deal with this. We have 40 years of players who are going to be affected by this. There's work to be done."