With everything going on in his life, Tyler Summitt says he has not had time to think about his graduation next week from the University of Tennessee.
But worry not, he says, laughing: "I ordered my cap and gown just in time."
The son and only child of legendary basketball coach Pat Summitt is coming to terms with an illness millions of children and loved ones before him have had to face: a brain-wasting disease that robs people of their memory and other cognitive skills. Summitt, 59 � the all-time winningest basketball coach, man or woman � has early-onset Alzheimer's disease.
Tyler, 21, who grew up on the courts where his mother built her legacy, tells USA TODAY, "My mother and I have gotten closer because of this diagnosis."
More than 5 million people in the USA have a form of Alzheimer's, and numbers are expected to triple by 2050 as Baby Boomers age. By going public with the incurable illness, Pat Summitt is trying to raise awareness, fight for more research dollars and break the stigma that has sent many others, including President Reagan a generation earlier, into seclusion.
Since Reagan was diagnosed in 1994, researchers have made strides in understanding the disease. In the coming days, the government is expected to finalize a multi-agency national plan whose No. 1 goal is to find a cure by 2025. Similar strategies have been game-changers for heart disease and HIV/AIDS.
Amy Sancetta, AP
Tennessee coach Pat Summitt waves to the fans as her son Tyler holds the trophy after the Lady Vols defeated Stanford 64-48 in the NCAA college basketball national championship game.
Tyler has been a fixture beside his mother as she has had to gradually give in to the slow degradation of her brain. He accompanied her last spring to the Mayo Clinic in Rochester, Minn., and was with her when doctors diagnosed her condition. He sat beside her April 18 at the news conference where, after 38 seasons, 1,098 victories and eight national titles � second only to legendary UCLA coach John Wooden's 10 � she announced that she was resigning as head coach.
Summitt's extraordinary successes have molded her son. The once-euphoric little boy who cut down championship basketball nets in his mother's arms decided to follow in her footsteps and will be an assistant coach after graduation. "Coaching is my passion," he says, and adds that his mother is "my No. 1 mentor. I still learn from her every day."
When he says he's not worried about her as he prepares to leave home in three weeks to start his coaching career, Tyler is buoyed by an expression resembling his mother's trademark look � that one where her luminescent blue eyes freeze on the person she is addressing to let her know in no uncertain terms that what she says is non-negotiable.
He lists his reasons.
For starters, he says, "she's still the one in charge. She doesn't need care yet."
When she does require more assistance, their family, he adds, is really one large clan. There will be no empty-nesting in their Knoxville home. Pat is divorced, but "she's got friends, players, assistant coaches coming to see her all the time. Maybe that's why I'm so comfortable leaving home."
'Tremendous grace and humility'
Tyler � who calls Summitt's players his sisters � says their love and respect is unwavering.
Kara Lawson is one of those sisters. She played guard for Summitt, starting as a freshman in 1999, went on to help the USA win gold at the 2008 Olympics, now stars in the WNBA and is an ESPN analyst.
"She taught us to maximize our time each day, giving everything you can," Lawson says. "She taught us how to excel and about seeing things through to the end. We made that commitment to her, and it stays with you. It won't change.
"I'm always in contact with her. I'm texting her, calling her, and my husband and I go to see her a couple of times a year. She loves him as much as she loves me."
Lawson called Summitt on Aug. 22, when she told the world she had early-onset dementia.
"I asked her how she was doing," Lawson says. "And it was so Pat. She wasn't thinking about herself. She was at a birthday party for a friend who was turning 90. She's always been about other people and a greater cause. This is someone who has tremendous grace and humility."
Tyler says his mom's inner grace comes from a strong trust: "I'd be remiss not to mention how much our faith has helped us. I have to think God has a plan."
They often read the Bible with players. Shelley Sexton Collier, another former player, stops by the house and walks with Pat most days.
"By sharing their lives with others and with God, they're really able to experience the blessing of community," says Andrea Raynor, a hospice chaplain and author of The Voice That Calls You Home: Inspiration for Life's Journeys. "They can all accept, persevere and know they're loved, whatever happens. That's very inspiring."
After Summitt led her team to a perfect record in the 1997-98 season, UCLA's Wooden told ESPN the Tennessee coach is "trying to become better all the time."
That drive hasn't changed. Having the courage to get an early diagnosis is important, says Beth Kallmyer, a vice president at the Alzheimer's Association. "Even in the early stages, if you're having memory issues, you can talk to family about how you want to handle things," Kallmyer says. "The thing we hear from people with the disease in early stages is it's important to have some kind of control."
A breakthrough is long overdue. There hasn't been a new discovery in treatment options since 2003. The drugs available now treat only the symptoms, which occur years after the disease begins. But there is hope. Three pharmaceutical companies wrap up trials this summer for drugs that would bind to and remove amyloid plaques � believed to be one of the underlying causes of Alzheimer's � through the bloodstream, similar to how statins gobble up "bad" cholesterol and help prevent heart disease.
The rush for a cure
William Thies, chief medical and scientific officer of the Alzheimer's Association, says that if even one of the trials is successful, there will be "a remarkable change in the environment. You'll have a way to diagnose and a race to find the most effective, safe way to lower plaque levels. These are terribly important trials."
But for now, the disease remains a slow-moving, merciless life sentence. When Ron Petersen, director of the Alzheimer's Disease Research Center at the Mayo Clinic, gave Summitt the news, Tyler was stunned.
"I was there with her and one of her best friends," Tyler says. "I didn't think it was possible. I mean, her grandmother on her father's side is the only one in the family who has had the disease."
Alzheimer's does run in families. Early-onset dementia � the kind Summitt has � is linked to three genes. If someone has one of the genes, he will develop the disease. And in the months leading up to the diagnosis, Tyler knew something was wrong.
"I was used to watching her juggle eight different things at one time, then come home and cook us dinner," he says. "But suddenly she couldn't manage as much anymore. She could still do a lot � but she came down to everyone else's level. I didn't know what was wrong with her."
Pat struggled to believe the diagnosis, but soon afterward, the mother and son started mapping out their future. She wanted to coach for another year. He started his senior year in college with the dream of graduating and being the next coach in the family.
Basketball wasn't his first choice. He started out playing soccer; he says his mother never forced him to do anything he didn't want to do. But when he didn't make his first hoops team at age 11, she set him on the right path.
"I was sitting in my bedroom with a basketball under each arm," he says. "Tears were streaming down my face when I told her I'd been cut."
She told him: "Tyler, if you wear out both those balls, you'll make the team next year. You've got to start your own engine every day. Nothing is ever going to be given to you."
He did make the team the next year, went on to coach AAU ball in the summers, spent one season with his mother as a student coach and played as a walk-on the past two years at Tennessee.
He reports to work May 21 at Marquette.
"It will be weird with me being on the bench and my mom being in the stands watching me," he says.
But his own cheering squad is taking shape. During her new role next season as head coach emeritus, Pat Summitt might even consider cheering for a team other than Tennessee.
"I plan to be at some of his games," she says. "I'm very proud."
For someone who always demanded excellence from others, it was time to let go after she had trouble this season diagramming plays and being "coach." But not before she had a heart-to-heart with her son.
"We were in the car together recently, driving three hours each way to visit her mother," Tyler says. "We talked about it then. � I think that's when she decided to step down."
Tyler's advice to others facing a parent's Alzheimer's?
Keep moving forward
"This disease can be devastating, but you have to take it one day at a time," he says. "My mom always told me to focus on the present. She says, 'Left foot, right foot, breathe.' "
And keep making new memories, he says: "Don't be worried if they're going to remember everything. You will remember, and can always have that."
Making incredible memories is what the Summitts have been doing during a whirlwind two weeks. Their speeches in Washington on April 24 at the Alzheimer's Association National Dinner had the audience on its feet. "When the doctors told me about this diagnosis, I told them, 'You don't know me,' " Pat Summitt said. "I have more than a little bit of fight in me."
Maria Shriver, whose father, Sargent Shriver, died last year of Alzheimer's, presented the Summitts with the Sargent and Eunice Shriver Profiles in Dignity Award.
The Summitts flew the same night to Atlanta, where she was given the 2012 Coach Wooden Citizen Cup the next day. Then they flew home and learned that President Obama had named her one of 13 recipients of the Presidential Medal of Freedom, the nation's highest civilian honor. In a statement, Obama said these honorees "have challenged us, they've inspired us, and they've made the world a better place."
Any wonder a loving son hasn't had time to think about his college graduation?
Left foot, right foot, breathe.
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