Doctors: Summitt disclosure can help
Medical experts encourage patients to stay active, continue working
In November 1994, at the conclusion of his letter to Americans announcing he had been diagnosed with Alzheimer's disease, former President Ronald Reagan wrote, "I now begin the journey that will lead me into the sunset of my life."
Nearly 17 years later, in announcing she has been diagnosed with early-onset dementia (the Alzheimer's version), Tennessee women's basketball coach Pat Summitt took a different approach. She isn't going anywhere.
"I plan to continue to be your coach," Summitt, 59, said in a statement. "Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days."
While Tuesday's announcement was met with surprise and sadness in the sports world, it already was sending waves of inspiration through the medical community. Realize it or not, experts say, the legendary women's basketball coach is about to become one of the most influential people ever diagnosed with the progressive disease, joining President Reagan, Charles Bronson and Charlton Heston.
"Traditionally someone makes this announcement and then they almost vanish from the public eye," said Dr. Murali Doraiswamy, a professor at the Center for the Study of Aging at Duke Medical Center and the author of "The Alzheimer's Action Plan." "Reagan said he was going to ride off into the sunset. Well, she's one of the first people who have said, 'Yes I have this, but I'm getting good care from great people and I can continue to do what I'm doing.' And that's a huge, important shift in attitude. That alone is going to help so many people."
According to the Alzheimer's Association, 5.4 million Americans currently live with the disease. Of those, 200,000 are under the age of 65. It is the sixth leading cause of death in the United States and the fifth leading cause of death for those 65 and older. It is the only cause of death among the top 10 without a way to prevent, cure or even slow its progression.
Summitt has won 1,071 games in her 37-year career at Tennessee and is college basketball's winningest coach. Her decision to continue coaching despite her diagnosis will not only inspire others, experts say, but help her, as well. Though there is no known cure for the disease, there are four FDA-approved medications that can slow the onset of symptoms, as can continuing to exercise and challenge the mind. It isn't unusual for CEOs and even doctors to return to work depending on the severity of their symptoms.
"The first thing I tell a patient is you've got to stay active," said Dr. Henry Paulson, the director of the University of Michigan's Alzheimer's Disease Center. "And in a way, continued work is one of the best things you can do. The brain is an adaptive organ. Even though cells are sick and dying from dementia other cells are picking up the slack."
Still, coaching won't be easy. Paulson said that as the disease progresses, the thing that will be affected most is likely to be Summitt's short-term memory, a critical component of being a coach in any sport.
"There's a lot that she knows about basketball that is deep in her brain that has been practiced and perfected. Many of those skills and that knowledge will remain. It doesn't just disappear," Paulson said. "But the challenge will be laying down new information. Her ability to learn new information about a team they are opposing or to learn about new players coming on campus -- that will eventually be affected."
Which is where the help of Summitt's experienced staff of assistant coaches will be critical. Mickie DeMoss, Dean Lockwood and Holly Warlick have a combined 89 years of coaching experience among them. The help of these assistants and the entire athletic department staff at Tennessee will play a critical role in how long Summitt is able to continue coaching and how well she manages the stress caused by challenges from the disease.
In a typical case, Doraiswamy said, the symptoms will progress from pre-Alzheimer's, where a patient's short-term memory gradually weakens, to a mild case, where the patient may become disoriented with date or time. Next is the moderate stage, where the disease affects a patient's functioning abilities like driving, managing money and learning a new technological device. If diagnosed early, Doraiswamy said, it might take three to five years before someone progresses to the moderate stage. And it isn't until later when a patient struggles with everyday tasks like getting dressed or brushing teeth.
In other words, depending on the specifics of her diagnosis, Summitt could continue to successfully lead the Lady Vols for several more seasons.
"She could be a mentor or a motivator, someone who does a lot of things that have been practiced routine for many years. She could do that without any problem," Doraiswamy said. "She may forget names on her team, she may occasionally forget that the team already did a drill, but if she has a good support network around her, there is no reason she can't continue to play a very important role with her team."
The impact of which will reach far beyond any basketball arena.
"We want people to be more proactive in their care. We want everyone to fight this disease and not just silently give in," Doraiswamy said. "So I'm hopeful that she continues to do all the spectacular things she's already done. If she can lead her team to a successful season this year what an inspiration that will be."
COACHING WITH DEMENTIA
In August, Tennessee coach Pat Summitt, 59, revealed that she has been diagnosed with early-onset dementia, Alzheimer's type.