Pat Summitt Facing a New Opponent: Alzheimer’s Disease

American Icons, Featured Article, Sports
on November 10, 2013
Bryan Allen Pat Summitt greets fans and supporters during a 2013 book signing in Knoxville, Tennessee.

Pat Summitt, 61, smiles as eager fans approach her one by one on the University of Tennessee campus in Knoxville, where the legendary basketball coach signs copies of her newest book, shakes hands and reassures the world that she remains a formidable force — both in sports and life.

“How you doin’? What’s your name? Do you live around here?” she asks while greeting each person during an autograph session in the campus bookstore.

Despite her battle with early-onset dementia and retiring in 2012 from the helm of Tennessee’s Lady Volunteers, the nation’s winningest college basketball coach maintains a visible and powerful presence wherever she goes. When not cheering on her beloved team, she is sharing her inspiring story and using her fame to fight a new opponent: Alzheimer’s disease.

In 2011, she launched the Pat Summitt Foundation to promote public awareness, advocate for patients, and fund research into the progressive and debilitating brain disease for which there is no known cure.

“It is in my nature to be forthcoming, to confront things head-on,” Summitt says. “I do not want a pity party for me. I want to use my energy and determination to help win the fight against Alzheimer’s. I want my foundation to be part of the national team finding a cure for this disease.”

Competitive drive

Summitt began to develop grit and tenacity at a young age. Patricia Sue Head grew to nearly 6 feet tall in Henrietta, Tennessee, where she milked dairy cows on the family farm and shot hoops with her two older brothers. She became a star basketball player in high school and won All-American honors at the University of Tennessee-Martin. In 1974, at age 22, she began coaching the Lady Volunteers in Knoxville at a time when female players didn’t have uniforms. In 1976, she earned a silver medal co-captaining the first U.S. women’s Olympic basketball team and, in 1984, coached the U.S. team to Olympic gold.

During her 38 years of coaching, Summitt was a relentless competitor, pushing her players while elevating the sport of women’s basketball. She won 1,098 games—more than any other NCAA basketball coach—and her Lady Vols clinched eight national titles.

“She made every day and every practice so tough that the games almost seemed easy,” recalls Michelle Marciniak, 39, the point guard on Summitt’s 1996 national championship team.

Kara Lawson, 32, played from 1999 to 2003 for Summitt, who taught her: “Don’t ever be outworked.” Today, Lawson continues that work ethic playing for the WNBA’s Connecticut Sun.

Despite Summitt’s tough-as-nails reputation, she showed a softer side at home. “She made sure that every day she told me she loved me,” says her son, Tyler, 22, assistant women’s basketball coach at Marquette University in Milwaukee, Wisconsin. “Then again, if I messed up, if I didn’t communicate or I was dishonest, I got the stare.”

Game changer

Three years ago, while visiting her mentor, Marciniak noticed something was different. They had talked long into the night about family, basketball and business. “And the next morning when I saw her in the kitchen, she said, ‘Michelle, how is your family?’ And I froze,” Marciniak recalls.

Other signs of dementia began to surface. The coach, known for her razor-sharp memory, began repeating questions and fumbling important details. She got lost while driving on familiar streets and, at times, struggled to concentrate on the game she loves. In April 2011, with Tyler at her side, Summitt was diagnosed with early-onset Alzheimer’s, the term used when symptoms appear before age 65. At the time, she was 59.

“It was very sad,” Tyler says. “But at the same time, I knew that God had a plan.”

That summer, Summitt went public with her diagnosis. The following April, she retired as head coach of the Lady Vols in “one of the toughest decisions I’ve ever had to make.” But instead of going into hiding, Summitt immediately began using her renown to shine a light on the disease she shares with 5 million Americans. As an ambassador in the fight against Alzheimer’s, she attends events to raise money for research and to bring attention to the disease.

“On a daily basis, we hear from people who are donating that have no connection to basketball whatsoever or to Tennessee, but they’ve heard of Pat Summitt and are fans of hers just because of who she is and what she’s doing,” says Patrick Wade, 37, executive director of the Pat Summitt Foundation. “Her celebrity status is bringing awareness to Alzheimer’s in a way nothing else could have done.”

Holly Warlick, who replaced Summitt as Tennessee’s head coach after 27 years as her loyal assistant, credits her friend’s grit and grace for beginning to soften the stigma of dementia in America. “Pat coming out has allowed other people to come out and be comfortable with saying they’re battling Alzheimer’s or dementia,” says Warlick, 54. “The more you talk about it, the more exposure it’s going to get, and I think Pat understands that.”

Her courage has endeared fans.

“I think it’s a true reflection of who she is, inside and out,” says Susan Pelfrey, 49, of Farmington, Pennsylvania, among those lined up at a book signing to shake Summitt’s hand. “It’s not just about being a basketball coach and teaching our young ladies. It’s about whatever life throws at you, hit it head on.”

A new season

Summitt, who continues to attend most Lady Vols practices and games, manages her illness by exercising five days a week and tackling crossword puzzles and other brainteasers.

“It’s like she’s back as a basketball player training for the Olympics again,” Tyler says. “She’s focusing on what she can control. The saying she probably says the most these days is, ‘It is what it is, but we make it what it will be.’”

Summitt is having an impact raising money for research and bringing exposure to the challenges of Alzheimer’s disease, says Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, Minnesota,

“She didn’t plan to be this role model,” adds Big East Conference associate commissioner Danielle Donehew, 36, who once worked for Summitt. “However, I think God has given her this platform and she is not shrinking away.”

Summitt’s determination to win remains. “I hope I can encourage others living with Alzheimer’s disease to continue living their lives,” Summitt says. “Keep fighting, keep living, keep making the most of every day.”