Tennessee’s coach Summitt has early onset dementia

KNOXVILLE, Tenn. — Pat Summitt’s doctors are lucky they are still standing. When the first neurologist told her she had symptoms of early-onset Alzheimer’s disease, she almost dropped him with one punch. When a second one advised her to retire immediately, she said, “Do you have any idea who you’re dealing with?”

Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who holds the NCAA career record for victories, men or women, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. They were small, baffling glitches: a woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. “She lost her keys three times a day instead of once,” her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.

“Are you having trouble with your memory?” friends began asking, puzzled.

“Sometimes I draw blanks,” Summitt finally admitted.

Her first clue that something was badly wrong came last season, when she drew a blank on what offensive set to call in the heat of a game.

“I just felt something was different,” she says. “And at the time I didn’t know what I was dealing with. Until I went to Mayo I couldn’t know for sure. But I can remember trying to coach and trying to figure out schemes and whatever and it just wasn’t coming to me, like, I would typically say, “We’re gonna do this, and run that.” And it probably caused me to second-guess.”

Summitt believed her symptoms were the side effects of a powerful medication she was taking for rheumatoid arthritis, an excruciating condition that she has quietly suffered with since 2006. The drug is associated with forgetfulness, as is rheumatoid itself. Instead, when Summitt received her test results from the Mayo Clinic at the end of May, they confirmed a shocking worst-case scenario: she showed “mild” but distinct signs of “early-onset dementia, Alzheimer’s type,” the irreversible brain disease that destroys recall and cognitive abilities over time, and that afflicts an estimated 5 million Americans.

Denial was followed by anger. For the first few weeks, Summitt would barely even discuss the subject. She told her doctors, “You don’t know me. You don’t know what I’m capable of.” Finally, Summitt realized she would have to accept the diagnosis. “I can’t change it,” she says. After a pause, she adds, “But I can try to do something about it.”

Last week Washington, D.C. attorney Robert Barnett flew to Knoxville to meet with his longtime friend and client, half expecting her to step down after 38 years as Tennessee’s coach. With him, he brought a copy of the statement with which former President Ronald Reagan announced in 1994 that he had Alzheimer’s. But Summitt told Barnett that she did not believe her symptoms were severe enough yet to warrant retirement, and that she would like to coach at least three more years, if possible. She also decided against a formal statement. Instead, she sat down for an interview with this writer, who co-authored her 1999 autobiography, “Reach for the Summit,” to discuss her illness publicly for the first time.

Full disclosure: It is the measure of Summitt’s large-heartedness that she could call any of a half-dozen people her closest friend. This writer has only one: her. “I would rather drive stakes through my own hands than write this story,” I said.

“It is what it is,” she said. “I’ve got to face it.”

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Last Thursday, Summitt, Barnett, and her 20-year-old son Tyler, who is a junior at the University of Tennessee, met with Chancellor Jimmy Cheek and Athletic Director Joan Cronan to inform them of her condition. Barnett had warned Summitt that contractually school administrators had the right to remove her as head coach immediately. Instead, Cheek and Cronan listened to Summitt’s disclosure with tears streaming down their faces. “You are now and will always be our coach,” Cheek told her. With the blessing of her university, she will continue to work for as long as she is able.

“Life is an unknown and none of us has a crystal ball,” Cronan says. “But I do have a record to go on. I know what Pat stands for: excellence, strength, honesty, and courage.”

To Barnett, Pat’s fight is characteristic; her determination to keep working, and also to act as a spokesperson for Alzheimer’s, is not incompatible with the values she has always preached as a coach.

“If you go back to her speeches, and her discussions with players through the years, you see several things,” Barnett says. “One is absolute dedication. Two is an unwillingness ever to give up. And three is an absolute commitment to honesty. And in this challenge that she’s facing, she is displaying the exact traits that she’s always taught. So often with people at the highest levels of their careers, one finds that they talk the talk but don’t walk the walk. Pat is going to run this race to the very end.”

Tennessee will be in uncharted territory, as will Summitt herself: Alzheimer’s is an unpredictable and dignity-robbing disease, thus far without a cure. The school’s concerns over leaving her in place range from potential embarrassment, to a decline in Summitt’s health, to the possibility that players could feel shortchanged, or that the team is more about Pat than them. However, Cronan believes the exchange is worth it. “Think about the difference she’s made, and the difference she can make going forward,” Cronan says. She points out that even as Summitt was struggling both mentally and physically with her undiagnosed condition last season, she led Tennessee to a 34-3 record, swept the Southeastern Conference regular season and tournament titles, and reached the NCAA Final Eight.

Nevertheless, Summitt has agreed to a significant redistribution of her duties. In consultation with Cronan and her staff, her role will be redefined to give her colleagues more formal responsibility, such as calling plays during games. Summitt will continue to do what she has always done best: teach, and lead. “Pat’s a team player, she knows how to make a team work, and I’m very comfortable,” Cronan says.

“I’ve got a great staff and great support system, and I’m going to stick my neck out and do what I always do,” Summitt says.

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According Tyler Summitt, there is no diagnosis that can accurately reflect his mother’s fierce will, and famously incandescent energy. The reality of Summitt is that she is functioning _ and even cracking a few wry jokes. “I’ve forgotten I have it,” she says, grinning.

In the past week she spoke at an orientation session for Tennessee’s athletes and sang the fight song “Rocky Top” to them, read the newspaper aloud over her morning coffee, appeared at a “Hoops for Hope” benefit for children with Down’s Syndrome, worked on recruiting, and hosted a large dinner at her home to prepare her staff for her announcement. And, on Tuesday afternoon, at the same time this article was released, she walked into the Tennessee locker room to inform her current team of her condition. She was prevented from telling them earlier by the fact that two of her players had been in China in the World University Games and did not arrive home until late Monday.

“I just want them to understand that this is what I’m going through, but you don’t quit living,” she says. “You keep going.”

Thus far, Summitt has exhibited only the slightest outward signs of her condition. There is a faint sense of dimming, as if a jar has been placed over a candle.

After several instances of forgetfulness last season, she says, “I lost my confidence.” She became increasingly hesitant, and withdrawn. She avoided meeting with players one on one, afraid she might say something wrong. There were days — not many, but a few — when she couldn’t bring herself go to the office at all, and stayed home, “just to be around the house, and be in a safe place.”

“Pat, you need to be here, need to be here for this team. What is going on with you?” DeMoss asked.

“I don’t know,” she said. “I don’t know.”

Finally, when the season ended, Summitt decided to visit the Mayo Clinic for a full examination. For three days she underwent a battery of tests, an MRI, a PET scan, a neuropsychological evaluation, and a spinal tap. After the spinal tap, she was told to remain lying down for 20 minutes. Sitting still is not something that comes naturally to her. Five minutes later she announced, “I feel fine,” and jumped off the table. A nurse looked at Tyler, and lifted an eyebrow. “I’m not going to be the one to stop her,” the nurse said.

She performed less strongly on the neuro-psych exam, which evaluated her mental status, and problem solving and spatial abilities. She was led into a small white room by a stranger who promptly began firing math questions at her — and math has always been a sore subject with Summitt. Her college sorority sisters at the University of Tennessee-Martin had to do her homework for her.

Asked to count backward from 100 by 7s, she froze. Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton. This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cell phone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.

“They didn’t test for leadership,” Tyler says. “They didn’t test for relationships. They didn’t test for basketball IQ. None of those things are on the test, it was just math problems. They asked questions she wouldn’t know on a regular basis. So I don’t think the test applies to what she does as a coach.”

At the conclusion of the testing, Dr. Ronald C. Petersen, director of Mayo’s Alzheimer’s Disease Research Center, rendered his opinion: She appeared to have signs of the disease, though she would have to wait for the lab results to be sure. Summitt was so highly functioning that it actually delayed her acceptance of the diagnosis. Immediately after her stay at Mayo she rushed to the Southeast Conference annual meetings in Destin, Fla., then back to Knoxville to run a series of summer camps, and then hit the road again for a series of basketball tournaments to evaluate potential recruits.

It wasn’t until August that the reality of her condition hit home. “There was a pretty long denial period,” Tyler says. “At first she was like, ‘I’m fine.”’

When the blow finally fell, it was heavy. Summitt had always been the caregiver: Friends, family and former players struggling physically or emotionally have always come to her house for comfort, a hot meal and soothing advice in that honeyed southern voice. “I want to go see Pat,” is a common refrain. It wasn’t easy to reverse the role, and to admit that she would need care.

In September 2006, not long after the death of her father, she separated from R.B. Summitt, her husband of 26 years. Some months later, she found herself immobilized by physical pain, and was diagnosed with rheumatoid arthritis. Summitt rarely betrayed in public the toll of that disease, but there were occasions, before it was successfully controlled by medication, when her son had to help her put her socks on. Once, I sat with her in a doctor’s office while he plunged a gigantic syringe, big as a beer bottle, into her knee. He pulled out seven syringes of fluid from her swollen joint — more than a six pack. On another occasion, during a limping stroll, I asked her how much she hurt. “On a scale of 1 to 10? A seven,” she said pleasantly.

In between those traumas she suffered a shoulder separation — from fighting a raccoon — and was hospitalized twice, once for cellulitis, and once for dehydration and exhaustion. Still, for all of that, she managed to lead the Lady Vols to consecutive national championships in 2007 and 2008.

Through it all, there has always been a sense of centeredness in Summitt. She is like a marble pillar, ramrod straight, that seems to have stood for a thousand years, while everything around it falls.

“Everyone has always wanted to know what Pat’s really like,” DeMoss said. “The word I’ve always used is ‘resolve.’ Pat has more resolve than any one I’ve ever known. She has a deep, deep inner strength.”

But now she will need a different kind of counterintuitive strength. Surrender and acceptance have never come naturally to her, nor has admitting vulnerability. She has trouble even uttering the word Alzheimer’s. But she’s learning.

“We sat down and had a good talk, and realized that the only reason we even made it this far, was that we had each other,” Tyler says. “It started with her father passing away, and then the divorce, and the arthritis, and then the Alzheimer’s, and each of those things, I don’t know how anyone could go through them alone. So we figured out that as much as we wanted to be Super Man and Wonder Woman, and take care of things alone, we needed each other.”

With acceptance has come relief — and, thanks to treatment, apparent improvement. Under the combined care of Mayo and her local primary care physician, Dr. Amy Bentley, she is taking the latest Alzheimer’s medications, Aricept and Namenda, though her doctors have said it is early for her to be on them. They have proved visibly effective. She is also on a new rheumatoid medication, and is pain free.

Her intention is to remain as sharp and strong as possible over the next few years, with the hope that researchers are racing toward new therapies or a cure.

“There’s not going to be any pity party and I’ll make sure of that,” she says. “I’m not giving up. I’m gonna do everything I can do. You ever seen me not be able to deal with what I got to do?”

Over the last few days, with the clarity of her diagnosis and decision to go public, Summitt has recovered her confidence. More often than not, it is she who comforts others, as usual. Her staff have grief-stretched looks around their eyes, and seem quietly destroyed under their skins. Every so often you find one of them has ducked into her laundry room to weep. It’s Summitt who puts her arms around them and talks quietly into their ear. “I don’t want you worrying about me,” she says. Strong has always been her natural, preferred state.

Tyler divides his time between his mother’s sprawling house on the banks of the Tennessee River, and an apartment just off-campus he shares with two college friends, with her cheerful approval. “I want him to go live his life, he needs to go enjoy being a college student,” she says.

Most nights, however, he spends at home. When everyone departs the Summitt household there are two people left, gazing at each other with a deep, indestructible understanding. Suddenly, something becomes clear: Summitt’s qualities and legacy have been vastly underrated. All these years, while she was coaching basketball and teaching other people’s daughters, she very quietly and without any fanfare, did a stupendous job of mothering her son.

“I followed her everywhere growing up,” Tyler says. “I followed her on bus rides, airplanes, in gyms and in locker rooms all over the country, and I thought she taught me everything she had. But she saved this lesson, to always come out and be open, to not be scared, to have the courage to face the truth like she’s doing.”

The boy, you realize with a start, is looking more like her all the time. He has the same scotch-red coloring, the same uplifted chin. The eyes are slightly different, a milder more limpid blue. But there is the same look in them, a quality. A candle.

Ÿ Daily Herald note: WNBA star Candace Parker, a Naperville Central grad who won two national titles with Summitt at Tennessee, tweeted this message before her game in Washington, D.C. Tuesday night: “Coach Summitt you never cease to amaze me with your strength and courage. Whenever you face adversity you tackle it ...”