She came to town for two days, providing a story so rich, yet, so full of pain that those of us who heard her story were left feeling as if we had to join her in this fight against this dreaded disease. 

 Sylvia Mackey, wife of NFL Hall of Famer, John Mackey, is a whirlwind. She travels from coast to coast sounding the alarm on dementia. Anyone in her path will be swept up and moved to act by what she has to say. I know I was. 

 I learned many things in the two days I was fortunate to spend with Sylvia. The most shocking may have been that there is no cure for dementia. Sad. One would think that in this day and age of advanced medical discovery, where there seems to be a pill for everything, that there would be something available that could snap a person back from that dark, cold place their minds have ventured into.

 And there were other shocking moments in Mrs. Mackey’s presentation and one of those was witnessing her resolve to help others despite her personal pain. She reaches out to the audience with a warmth that I’m certain John Mackey received as he suffered, apparently unaware of. 

 She brings with her videos that chronicle moments in their lives where the disease has altered John and Sylvia Mackey’s lives immensely. Moments she relives each time she takes to the stage to present their story…a story that countless others are living each day. Amazingly, she does so without sadness, at least there is no outward expression. She is about the business of enlightening, helping in any way she can to ease the pain of dementia. 

Growing up in Washington, DC, just 45 minutes from Memorial Stadium where Colts used to play, I was a huge John Mackey fan. On his back, his number 88 always seemed bigger than everyone else’s number. He was what every young boy who dreamed of playing football saw himself as…bruising and strong, ready and willing to take one for the team. 

What a contrast to his later years when the ravages of dementia claimed his mind. One of the videos shows a conversation John and Sylvia are having following an interview John had had with an ESPN reporter. It had been a lengthy interview where the Mackeys had discussed John’s illness in great detail. Only minutes after that interview John Mackey denied having dementia and spoke about what he would do “if” he had the disease. He said he would take something to fight it. 

 Again, there is no cure. There are medications that slow the spread of the disease and doctors do recommend certain physical activities to try to keep the mind sharp…as sharp as possible. But the grip of dementia is vise-like and the toll it takes is horrendous. 

Often overlooked are the caregivers. Caregivers aren’t spared the agony of this disease. They pick up the pieces strewn throughout the lives of their loved ones and carry on everyday. It’s hard work but Mrs. Mackey and I’m sure the millions of others who provide care for their loved ones wouldn’t have it any other way; except to not have ever encountered this nightmare in the first place. 

 But Sylvia weathers the storm, spending many waking moments doing what she can to make other’s lives a little more bearable. She tells her story to anyone who will listen in hopes that their path will be a little less rocky than hers has been.

Please read the companion piece written by Sherri Snelling, founder and chief executive of the Caregiving Club.

Meet the Hall of Fame Caregiver Who Changed the NFL

Sylvia Mackey, the widow of Baltimore Colts tight end John Mackey, is a powerful advocate for ex-players suffering from neurological disorders

By Sherri Snelling

Sherri Snelling, founder and chief executive of the Caregiving Club, is a nationally recognized expert on America's family caregivers and the author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care (Balboa Press, 2013).

The two-hour special PBS Frontline investigation, "League of Denial: The NFL's Concussion Crisis" premiered on October 8, 2013. 

The following related column is adapted from Sherri Snelling's new book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care (Balboa Press, 2012).

With power, speed and skill to spare, Hall of Fame tight end John Mackey was a gladiator during his 10-year National Football League career, most of it spent wearing No. 88 for the Baltimore Colts. In Super Bowl V in 1971, he and quarterback Johnny Unitas combined for one of the most famous touchdowns in the game's history, a then-record 75-yard reception that deflected off the hands of two other players before Mackey secured it, and his team's victory over the Dallas Cowboys. To commemorate that win, Mackey began wearing a cowboy hat. It would become his trademark.

Three decades later, things had changed. For four years, Mackey's wife, Sylvia, had been noticing certain changes in him and writing them down. Out of the blue, he would warn people that cheese was bad for them. An avid lifelong reader, John stopped reading books altogether. On cross-country flights, he sat with a blank stare, never looking at a magazine or engaging in conversation. The onetime snazzy dresser began wearing the same outfit day after day. He could sit staring in front of the TV for hours, just watching the Weather Channel.

Finally, in 2001, John received a diagnosis of frontotemporal degeneration (FTD), a neurodegenerative disease (also known as frontotemporal dementia) that affects the frontal and anterior temporal regions of the brain. These regions control personality and social behavior, speech and language comprehension, reasoning, decision-making and planning.

According to the Association of Frontotemporal Degeneration, FTD is the most common form of dementia among younger people, representing 10 to 20 percent of dementia cases overall, although it is sometimes misdiagnosed as a psychiatric problem, Alzheimer's disease or Parkinson's disease.

Dr. Gary Small, director of the UCLA Longevity Center and author of The Alzheimer's Prevention Program, believes that professional football players have higher rates of dementia at earlier ages in life because of the repeated minor concussions they suffer during games. In his book, he states that getting knocked unconscious for an hour or more can double one's risk of developing Alzheimer's disease.

"The first thing I remember feeling when they told me John had frontotemporal degeneration was relief," Sylvia says. "I finally knew something was medically wrong with him and it wasn't just him getting crotchety or strange. But by the time he was diagnosed, he had no idea what was happening to him. We did not have a chance to discuss it."

John was 60 years old.

Making Adjustments 

Later, in 2006, the couple prepared for a trip to an annual autograph show. "We never missed one," Sylvia says, "and I was determined this was something we were going to continue to do. It always made John happy — he never once turned down anyone who wanted his autograph."

But this trip proved different. They never made it on the plane.

At the Transportation Security Administration checkpoint, John refused to put his Super Bowl ring or cowboy hat on the scanner's conveyor belt. He did not understand why he had to do so or why the agents didn't recognize him. He thought they were trying to rob him. Sylvia tried to explain to the agents who John was and why he couldn't understand what was happening. Finally, though, he charged through the scanner. Several agents pursued him, but struggled to tackle the 6-foot-2-inch, 220-pound former football great. He dragged them for several feet until they could bring him down. The sight of her husband, handcuffed and taken away in an ambulance for evaluation, was almost more than Sylvia could bear.

She thought to herself, "I don't know if I can do this anymore." Then she collapsed.

At the hospital, John quickly returned to his jovial self as Sylvia recovered, even signing autographs for doctors and nurses who recognized him. Seeing her husband again basking in the light of his fame, she realized she could not give up on him.

She contacted the chief of TSA agents at Baltimore/Washington International, explained her situation and asked for help that would enable her husband to travel to the sporting events and autograph shows that helped maintain some normality in their lives. The executive arranged for John to be brought to a private screening area on future flights, where he could be scanned without having to remove items precious to him. Counterparts at the arrival airport would be contacted about the protocol for John as well.

Such special plans are not just for Hall of Famers. Any family caregiver can do what Sylvia did. Airports will work with families to accommodate their loved ones' special needs, but you can't wait until you get to the airport to ask. Call ahead and write down the names of whoever helps you so you can reference the plan when you arrive at the terminal. The Society for Accessible Travel and Hospitality can be a valuable resource, offering tips and checklists for those traveling with someone who has Alzheimer's disease or similar conditions.

The Final Play

As John's disease progressed, he needed 24-hour supervision. Sylvia arranged for him to move into an assisted-living facility that, fortunately, was five minutes from their home. But the cost was daunting. Over his 10-year career as one of the NFL's most valuable players, John earned less than $500,000 — today, most bench players in the league collect more than that in a single season. He was receiving a monthly pension of $2,450 from the NFL Players Association, but the costs of his care were escalating beyond that. To supplement his pension, Sylvia went to work as a flight attendant for United Airlines, a job she still has today.

She also wrote a heartfelt, three-page letter in 2006 to then-NFL commissioner Paul Tagliabue in which she pleaded with the league to do more to help retired players and their families cover the costs of home care and care facilities. She described John's condition in detail, calling his dementia "a slow, deteriorating, ugly, caregiver-killing, degenerative, brain-destroying tragic horror." And she detailed her financial struggles.

The letter had a profound impact on the league's attitude toward its ex-players, as did swelling media coverage of the previously underreported crisis of neurological disorders among retired football players, which many neurologists believe are caused or exacerbated by head injuries or multiple concussions during the players' careers. The NFL quickly reached agreement with the players union to provide additional coverage and benefits for former pros who have diagnoses of dementia, Alzheimer's disease, Parkinson's or ALS.

When the agreement was signed, a league official called Sylvia to tell her that the new program would be called the 88 Plan, after the number Mackey wore for the Colts. The new benefit allows qualifying retired players and families to collect $88,000 annually for institutional care or $50,000 for in-home care assistance. Along with other 88 Plan benefits, families could receive up to $100,000 a year. The league has paid out $16 million in 88 Plan grants since the program's launch in September 2007.

"It has been a great resource and sense of relief for NFL retired players and their families who are faced with mounting medical bills that cause so much financial stress," says Belinda Lerner, vice president of the NFL's Alumni Affairs and Retired Players Programs. "Sylvia became the passionate advocate and pioneer in helping us understand the upheaval and trauma families go through and we're proud to give back to those who have given so much to the sport of football." 

John Mackey died on July 6, 2011, at age 69. Today, Sylvia takes his place at gatherings of NFL players and their families. She attends every Super Bowl wearing a necklace with her initials and the number 88. As a member of the Association of Frontotemporal Degeneration's board, she remains a passionate advocate for FTD awareness, helping others understand the plight of caregivers like herself. And she keeps in touch and offers support to other caregiving spouses of retired players.

On the field, John Mackey earned his place in the annals of pro football. Off the field, Sylvia Mackey has earned her own place in the Caregiver Hall of Fame.