Pat and Tyler Summitt Team Up to Block Out Alzheimer’s

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She has baled hay and driven tractors as a Tennessee farm girl. She has played six games in two days, sleeping on gym floors and subsisting on a diet of bologna-and-cheese sandwiches as a member of the women's varsity basketball team at the University of Tennessee-Martin. She's represented the United States in the Olympic Games on two separate occasions, once as a player and once as a coach. And, over the course of a 38-year-career as head coach of the University of Tennessee Lady Vols basketball team, Patricia Sue (aka "Pat") Summitt has won 1,098 games, 32 Southeastern Conference titles and eight NCAA Championships, earning her the title of winningest coach in the history of the sport, bar none.

Despite the struggles and triumphs of her past, Pat is the first to admit that her current situation is, "by far, the biggest challenge I've ever faced. There is no comparison." She is one of the estimated 250,000 American adults living with early-onset Alzheimer's disease. Thought to be strongly influenced by genetics, this form of dementia can strike people as young as 30.

Pat was 59 when she was diagnosed in the spring of 2011. "There was a rush of emotions and then denial," she says. "But after a few days, I realized I had to face and fight the toughest opponent I had ever faced."

Fighting this formidable foe alongside Pat is her son, Tyler. As a child, he helped her cut down basketball nets after the Lady Vols' NCAA Championship victories. Now he is, in many ways, her "rock."

"Since my mother's diagnosis, our relationship has only grown closer," Tyler says, "My mom has had a profound impact on the person that I have become. She taught me through love, discipline, example and encouragement."

It was Pat who encouraged her son to pursue his own dream of becoming a collegiate basketball coach, a goal he achieved in the spring of 2014, when he was appointed head coach of Louisiana Tech University's Lady Techster basketball team. Pat's undaunted attitude towards her diagnosis of Alzheimer's disease (AD) further inspires her son. "My mom continues to mentor me, more than she realizes."

The New Game Plan

Honesty, diligence and teamwork—the trio of traits that form the foundation of Pat's inimitable athletic legacy—have also guided her approach to Alzheimer's.

As is often the case with the disease, Pat's symptoms progressed slowly. Tyler remembers growing up with a mom who could easily juggle ten tasks simultaneously. But, when Pat began to have trouble managing three or four things at once, she knew she needed answers.

Mother and son made the trek to the world-renowned Mayo Clinic in Rochester, Minnesota, where they received the life-altering diagnosis. The duo quickly recovered from their shock and moved forward, preparing the necessary legal documents and coming up with a plan for how to tell, not only friends and family about the shocking news, but the entire sports world as well.

"I have always encouraged my son and my players to be open and honest, so, while it was difficult, it was the right thing to do," Pat says about the decision to go public mere months after receiving her diagnosis. Tyler remained unfazed by his mother's candor. "She's always been an authentic, open individual," he says.

Pat continued to serve as head coach of the Lady Vols for one more season before handing over the reins to her long-time assistant, Holly Warlick. Stepping down from the post she had held for nearly four decades was a devastating move, but it was a decision in service to the program she'd built with her bare hands. As head coach emeritus, Pat continued to provide counsel and mentorship to the Lady Vol players.

Family, friends, fellow coaches and fans responded to Pat's announcement with an overwhelming wave of support. Standing ovations of people clad in shirts bearing the slogan "We Back Pat" were common sights whenever the storied coach took to the court.

An Alzheimer's Offensive

Pat's frankness in confronting her diagnosis have led to a flood of much-needed funds and attention for the Alzheimer's cause.

In 2011, she and Tyler founded the Pat Summitt Foundation, a non-profit dedicated to winning the fight against AD by awarding grants for research initiatives and support organizations for patients and caregivers. "I think one of the biggest challenges is the lack of research dollars going to finding a cure for the disease," Pat laments.

Indeed, the federal funding allotted for AD research ($566 million) is a mere fraction of the money that goes to cancer ($5.4 billion) and heart disease ($1.2 billion). Thin financial support and the persistent stigma that surrounds this disease helped compel Pat to share her experiences with others.

"The first step is having the courage to get out of our comfort zone and understand the disease," says Tyler. "This requires people not to be embarrassed about themselves or their loved ones. It's nobody's fault that they have it. We need to have fierce courage and stick together to battle this disease."

As a 23-year-old caregiver, Tyler has had to shoulder heavy responsibility and learn to cope with the emotional ups and downs that inevitably accompany a loved one's journey with dementia. But the grit and determination he learned at his mother's side have served him well. To other caregivers, he offers two main pieces of guidance: "Join a support group. Know that you're not on an island; you are not alone," and, "Enjoy the priceless moments and make new memories every day. Focus on what you do have."

Update: On June 28, 2016, only five years after her diagnosis, Pat Summitt lost her battle with dementia at Sherrill Hills Senior Living Community in Knoxville, TN.

Players, fans, caregivers and Alzheimer's advocates remember her as a pioneer in women's sports, a champion for Alzheimer's research and awareness, and most of all, we remember her resilient spirit. She was 64 years old.

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1 Comments

I am a Physician and psychiatrist, and my wife was diagnosed with Alzheimer's Disease at 65 years of age. I was aware of her having problems 2+ years earlier. My wife is/was a gifted clinical social worker who is loved by all who know her. Even now, she draws people towards her despite having severe aphasia. I have gone from being a senior clinician who treated Alzheimer's Disease to a loving and grieving caretaker of my girlfriend of 52 1/2 years. Initially, there was a new and different form of intimacy. We had a special kind of closeness, understanding, and collaboration. The inexorable toll that Alzheimer's has exacted during her participation as a subject in two failed treatment studies as well as my own present role as a control subject in a radioactive Tau protein identifier in PET scans study has redefined how we function without a change in our closeness. I hate the illness but wouldn't want to be kept from providing care for my wife. As Pat and Tyler have learned, real caring is a challenge but also incredibly gratifying. That being said, there is nothing glorious about this illness. The longer we live, the greater the likelihood that we will develop dementia increases progressively. If we don't direct more resources towards the early identification and treatment of Alzheimer's disease, global society will bear an impossible financial and emotional burden. I encourage all to take on this cause as if it were personal. I further encourage all people between ages 65 and 85 years of age to contact Brigham and Womens Hospital in Boston in order to the multi-site A4 study that is the first attempt to intervene with at risk individuals before they develop symptoms of Alzheimers. Contact Brainlink@ucsd.edu.