When UT basketball coach Pat Summitt announced she had been diagnosed with Alzheimer's disease, many fans took to social media to proclaim that if anyone could beat the disease, it would be Summitt, who was known for her focus and intensity.
Cindy Lowery was not one of those people.polls here 3634
As senior vice president for the Tennessee chapter of the Alzheimer's Association, she knew Summitt's prognosis was bleak.
"People learned this is not a disease anyone beats right now," Lowery said in an interview Tuesday. "We have nothing to prevent it, nothing to stop it, and there is no cure."
But what Summitt did, Lowery said, was put a public face on a disease that many wanted to keep hidden.
"There has been such a stigma associated with Alzheimer's. We appreciate her and her family for coming forward and putting another face on this disease and raising the level of awareness and education," Lowery said. "She attacked it like she attacked opponents on the basketball court."
Summitt was diagnosed with early-onset Alzheimer's disease, which refers to anyone with Alzheimer's who is younger than 65. Summitt was 59 at the time. Often those diagnosed with early-onset Alzheimer's have some genetic predisposition for the disease or a history of it in their families, but there is no indication that was the case with Summitt.
Scientists have begun to understand the causes of Alzheimer's only in the past few years, and there is still much they don't know.
The disease is degenerative, meaning it gets worse over time as brain cells die. There are two types of abnormalities in the brain that appear to be linked to Alzheimer's. Clumps of protein called beta-amyloid plaque build up and seem to interfere with cellular communications. And the brain's normal system for moving nutrients and other important materials, which uses tau proteins, malfunctions and the tau proteins twist into tangles.
The first brain cells to die are those linked to memory, and the symptoms then progress to other mental and physical functions.
"Alzheimer's symptoms generally start with short-term memory deficits and then, later on, problems with more complex decision making and problem solving, problems with language, and with regulating emotions," said Dr. Nathan Wyatt, a neurologist with Chattanooga Neurology Associates. "Then there is forgetting how to do physical movements and there can be some behavioral manifestations — emotional outpouring, mild hallucinations, acting on paranoid delusions."
While most people have some problems with their short-term memory as they age, Alzheimer's is more pronounced.
"You have your keys in your hand and you don't know those are your keys," Lowery said. "Someone who has always paid household bills stops. They used to bake, and they can't follow a recipe any more. We're talking about memory losses that affect their daily living."
In its early stages, it can be difficult to differentiate Alzheimer's from other forms of dementia. Doctors perform tests, for example, to see if there is another cause of the short-term memory loss.
"You do some lab work to be sure it is not a reversible cause such as a thyroid problem or a vitamin deficiency, those things can mimic Alzheimer's," said Dr. Berneet Kaur, a neurologist at UT-Erlanger Neurology. Doctors may also do an MRI or a CT scan to see if a tumor could be causing the memory problems.
For the families of Alzheimer's patients, a major problem is how to judge the progress of the disease and react accordingly.
"Are they taking care of themselves at home, are they managing their medications, needing help with meals? Maybe they shouldn't be driving," Kaur said.
While the discussion is not easy, families and the patient should start talking early on about how they will handle the later stages of the disease, she said.
"It's important to not wait until the end of the disease to have those conversations. Patients deserve a chance to voice their preferences, and they can't do that at a later stage," Kaur said. "Within the first year or two, doctors need to start opening up about 'what do you think about end-of-life care, what do you think about nursing homes,' draw them out while they still have a voice. Later on, they won't have that voice."
In its final stages, Alzheimer's may cause other problems that ultimately kill a patient. Patients forget how to swallow and then aspirate — draw fluid into their lungs — that leads to pneumonia or infection, Wyatt said. Patients are unable to tell their doctors about other symptoms such as a pain in their chest that could indicate another serious medical problem.
"There can be a general inability of the patient to recognize that other health problems are occurring," he said.
While there is no cure for Alzheimer's, there are some drugs already in clinical trials that seem to stop its progress, at least in laboratory animals. And researchers are developing new tools that allow doctors to diagnose Alzheimer's at an early age, before memory loss begins.
"If we could make a diagnosis before there is the early memory loss, and had a drug that could stop the progression, that would almost be as good as a cure," Lowery said.
Contact staff writer Steve Johnson at 423-757-6673, firstname.lastname@example.org, on Twitter @stevejohnsonTFP, or on Facebook, www.facebook.com/noogahealth.
In her own words: Memorable Pat Summitt quotes
"I won 1,098 games, and eight national championships, and coached in four different decades. But what I see are not the numbers. I see their faces."
"Here's how I'm going to beat you. I'm going to outwork you. That's it. That's all there is to it."
"You can't always be the most talented person in the room. But you can be the most competitive."
"Players don't care how much you know until they know how much you care."
"When you grow up on a dairy farm, cows don't take a day off. So you work every day and my dad always said, 'No one can outwork you.'"
"We do not win championships with girls. We win with competitors"
"If I ain't happy, nobody's happy."
"Teamwork is what makes common people capable of uncommon results."
"I remember every player — every single one — who wore the Tennessee orange, a shade that our rivals hate, a bold, aggravating color that you can usually find on a roadside crew, 'or in a correctional institution,' as my friend Wendy Larry jokes. But to us the color is a flag of pride, because it identifies us as Lady Vols and therefore as women of an unmistakable type. Fighters. I remember how many of them fought for a better life for themselves. I just met them halfway."
"Individual success is a myth. No one succeeds all by herself."
"There is nothing wrong with having competitive instincts. They are survival instincts."
"Silence is a form of communication, too. Sometimes less is more."
"I want to continue to do is to help these young women be successful. You don't just say goodbye at the end of their playing careers and end it there."
"The absolute heart of loyalty is to value those people who tell you the truth, not just those people who tell you what you want to hear. In fact, you should value them most. Because they have paid you the compliment of leveling with you and assuming you can handle it."
"I'm not sure, when it got right down to it, I would have ever left Tennessee. It's hard to leave home."
"You win in life with people."
"You can't pick and choose the days that you feel like being responsible. It's not something that disappears when you're tired."
"If I'm not leading by example, then I'm not doing the right thing. And I want to always do the right thing."
"Most people get excited about games, but I've got to be excited about practice, because that's my classroom."
"There is always someone better than you. Whatever it is that you do for a living, chances are, you will run into a situation in which you are not as talented as the person next to you. That's when being a competitor can make a difference in your fortunes."
"Admit to and make yourself accountable for mistakes. How can you improve if you're never wrong?"
"Discipline helps you finish a job, and finishing is what separates excellent work from average work."
"Attitude is a choice. What you think you can do, whether positive or negative, confident or scared, will most likely happen."
President Barack Obama on Pat Summitt
Nobody walked off a college basketball court victorious more times than Tennessee's Pat Summitt. For four decades, she outworked her rivals, made winning an attitude, loved her players like family, and became a role model to millions of Americans, including our two daughters. Her unparalleled success includes never recording a losing season in 38 years of coaching, but also, and more importantly, a 100 percent graduation rate among her players who completed their athletic eligibility. Her legacy, however, is measured much more by the generations of young women and men who admired Pat's intense competitiveness and character, and as a result found in themselves the confidence to practice hard, play harder, and live with courage on and off the court. As Pat once said in recalling her achievements, "What I see are not the numbers. I see their faces."
Pat learned early on that everyone should be treated the same. When she would play basketball against her older brothers in the family barn, they didn't treat her any differently and certainly didn't go easy on her. Later, her Hall of Fame career would tell the story of the historic progress toward equality in American athletics that she helped advance. Pat started playing college hoops before Title IX and started coaching before the NCAA recognized women's basketball as a sport. When she took the helm at Tennessee as a 22-year-old, she had to wash her players' uniforms; by the time Pat stepped down as the Lady Vols' head coach, her teams wore eight championship rings and had cut down nets in sold-out stadiums.
Pat was a patriot who earned Olympic medals for America as a player and a coach, and I was honored to award her the Presidential Medal of Freedom. She was a proud Tennessean who, when she went into labor while on a recruiting visit, demanded the pilot return to Knoxville so her son could be born in her home state. And she was an inspiring fighter. Even after Alzheimer's started to soften her memory, and she began a public and brave fight against that terrible disease, Pat had the grace and perspective to remind us that "God doesn't take things away to be cruel. He takes things away to lighten us. He takes things away so we can fly."
Michelle and I send our condolences to Pat Summitt's family – which includes her former players and fans on Rocky Top and across America.