Alzheimer’s disease: Use your voice to raise awareness

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Photo courtesy of Brooke Summitt
Breck Summitt gazes up at a statue of his grandmother, the late Pat Summitt, the winningest coach in Div. I collegiate basketball. The statue stands in Pat Summitt Plaza at the University of Tennessee.

(Posted June 28, 2020)

By Dedra Cordle, Staff Writer

The month of June has brought a confluence of life-changing events to Tyler Summitt, making it an emotional, physical and mental challenge to get through each year.

June 14 marks the date his mother, Pat Summitt, was born. For Tyler, the day brings forth a deep sense of gratitude for her life and warm recollections of presenting her with well-planned gifts to celebrate her special day.

June 28 marks the date Pat passed from this Earth. Tyler grieves the fact that he no longer gets to share big or small moments with her, especially life’s milestones like the grandson she never got to meet.

Thrown into this bittersweet mix is the nationwide campaign that takes place every June to raise awareness for Alzheimer’s, the degenerative brain disease that took Pat’s life in 2016 when she was 64.

“It is quite an emotional month for me. I’m not even going to lie about that,” said Tyler, a London resident.

Photo courtesy of the University of Tennessee
With her son, Tyler, joining her on the ladder, Pat Summitt holds the net aloft after coaching the University of Tennessee Lady Vols basketball team to the 2008 National Championship title.

But with all of the different feelings he experiences during this month, the one that always springs back up is determination–determination to honor his mother’s life, determination to share her story, and determination to make sure that those battling or providing care for people with this disease are not alone in their fight.

In 2011, Tyler was a sophomore at the University of Tennessee and on a flight with his mom to Minnesota to visit a team of neurologists at the Mayo Clinic. For months, he had been noticing small changes in her memory–misplaced keys, repeated questions and stories–but chalked it up to all of the stressors in her life.

“She had been through a lot of traumatizing events shortly before that stretch of time,” Tyler explained. “My mom and dad had separated and divorced, her father passed away, she was diagnosed with rheumatoid arthritis, and she severely injured herself backhanding a raccoon off the house deck.”

That is not to mention all the work she was doing coaching the University of Tennessee’s Lady Vols basketball team to back-to-back NCAA Div. I championships and hitting the recruiting trail to attempt even more.

“She had a lot of stuff going on,” Tyler said.

When they arrived at the clinic, Pat went through a battery of tests to determine her physical and cognitive abilities. The physical portion, Tyler said, was highly functional; the cognitive side was unclear but troubling.

“They told me they believed she had early onset dementia, Alzheimer’s type,” he said. She was 59.

Knowing his mother’s fiery temperament, Tyler did not look forward to breaking the news to her even as it was breaking his heart. When the doctors finally did tell her, they mentioned the word “retirement” and got a brief taste of Pat’s fighting spirit.

“She told them they cannot tell her what she can and cannot do,” he said.

After the visit to the Mayo Clinic, Pat kept the news to herself.

“I don’t think she wanted to acknowledge it yet,” Tyler said.

But eventually, she came to terms with what was happening and was determined she would not “disappear into the shadows.”

“My mother’s grandmother [on the paternal side] had dementia, and it wasn’t talked about at all in the family,” Tyler said. “There was a lot of stigma, and still is today, surrounding the disease and my mom wanted that to change.”

Before the start of the 2011-12 basketball season, Pat announced before the world that she had Alzheimer’s disease and it would be her last year coaching her beloved Vols.

“I think it was very courageous of her to do that,” Tyler said. “She knew that people would be watching her coach and talking about the disease. She wanted that awareness, and she wanted to offer strength to the people battling it, as well.”

Photo courtesy of the Pat Summitt Foundation
Tyler Summitt (third from left) and his wife, Brooke, pose with pro football greats Archie Manning and Peyton Manning, along with former Tennessee Governor Bob Haslam (far right), at a charity event benefitting the Pat Summitt Foundation, an organization that raises awareness of Alzheimer’s disease and other degenerative brain disorders, funds clinical trials for treatment and prevention, and provides resources for caregivers. The foundation is named after Tyler’s mother who passed away in 2016 at the age of 64 after a five-year battle with Alzheimer’s disease.

In November of that year, Pat and Tyler established the Pat Summitt Foundation, a fund of the East Tennessee Foundation. Its mission is to raise awareness of Alzheimer’s disease and other degenerative brain disorders, funds clinical trials for treatment and prevention, and provides resources for caregivers.

For a majority of Pat’s five-year battle with Alzheimer’s, Tyler was there taking care of her alongside a team of professionals. He called that time emotional, frustrating, fulfilling and inspiring.

“Alzheimer’s disease and dementia will rob them of memories, but that does not mean that you cannot make new memories while they are still alive,” he said.

Today marks four years since Pat Summitt, Olympian, recipient of the Presidential Medal of Freedom, winner of the Naismith Coach of the Century award, and the winningest Div. I collegiate basketball coach for both men and women, lost her life to Alzheimer’s.

Tyler said he thinks about her constantly and wonders what she would do in any given situation.

“I try to live my life by ‘What Would Jesus Do?’ and ‘What Would Pat Summitt Do?’” he said.

The answer he often comes up with is to get active and use your voice.

“During our stay-at-home orders,” he said, referring to the state mandated health issuance to slow the spread of COVID-19, “I kept thinking about all the people who are starting to notice small changes in their loved ones. And I wanted to speak up and share this story of my mother and to tell them and their caregivers that they are not fighting this battle alone.”

While the Pat Summitt Foundation is a global resource for awareness, fundraising, events and resources, local resources are available, as well.

Pat Baynes, the facilitator of the Alzheimer’s Support Group at the Madison House on Keny Blvd., said in-service meetings might resume in August at St. John’s Lutheran Church, 380 Keny Blvd., London. The group meets at 6 p.m. the first Thursday of each month.

She said all are welcome at the meeting, and she predicts the group will be welcoming some new members in light of the stay-at-home orders.

“This pandemic has allowed us to pay more attention,” she said. “I imagine some have been seeing changes in memory or personality in their loved ones and will need a place to turn to.

“At this support group, people can laugh, cry, debate, offer advice and scream out their frustrations.”

Baynes said knowing someone or providing care for someone with Alzheimer’s disease or other degenerative brain disorders can be draining, and people need to let their feelings out.

“We want people to know that we are here for them, even if we sometimes have to meet on [a conference call] or Facebook.”

Baynes said those interested in the Alzheimer’s Caregivers Support Group can contact her at (937) 269-3605.

Donna Wharton is the former facilitator of the Alzheimer’s Support Group in West Jefferson. She said she is not aware of any new or in-person meetings that are taking place there but encouraged residents to contact the Alzheimer’s Association’s Central Ohio chapter.

“They are a wonderful resource,” she said.

A representative of the Central Ohio chapter said all are welcome to join virtual meetings through AlzConnected. Those interested can call the chapter at 1-800-272-3900 to register. The hotline is open 24/7.

For more information about Alzheimer’s disease and dementia, visit alz.org/centralohio, or patsummitt.org.

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