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Couple of 60 years offers a message of hope after a clinical trial of ‘breakthrough’ Alz

Ron Borkowski made quite an impression in high school when he planted a kiss on a pretty, blonde-haired girl who would later become his wife. “I just walked up and kissed her.” Didn’t she think that was forward of him? “l didn’t. It took her back. She was surprised. Yes.”

Four years later in 1962 after he graduated from the University of Notre Dame, Ron married a girl named Carol Weller. The couple would leave South Bend, Indiana and live out West and in the Mideast.

They had five children, and in 1992 moved to Lexington where Ron worked for Sears and later the Lexington Legends. In addition to raising the children, Carol enjoyed reading, walking, and becoming an excellent bowler.

It was 2010 when Carol drove away from a bowling alley and life took a dramatic turn. She had told Ron she was going to visit a friend after bowling. Ron says four hours went by when he took a phone call from Carol.

She was not in Lexington. In fact, she was a long way from home. Carol was in Ashland, Kentucky on the side of the interstate. She had run out of gas and told Ron she had no idea where she was. A Kentucky State Trooper found her.

At that point, Ron knew something was very wrong. Carol was diagnosed with Alzheimer’s Disease, and for the next ten years, she and Ron would do everything they could to fight it. Ron became her full-time caregiver.

Increasingly there were moments she didn’t recognize Ron. He was devastated. “It’s a killer. That’s the hard part.” But they pushed on.

The couple agreed to take part in a clinical trial at U-K’s Sanders-Brown Center on Aging. For two years she took an experimental drug called Lecanemab.

It’s a drug for patients with mild symptoms of Alzheimer’s Disease. Ron says during that time Carol stabilized and her symptoms did not get worse.

Ron remembers how much that meant to him as her husband and caregiver. “I had my Carol back. I didn’t have to worry about tomorrow. Yea you worry, but you could see that hey she’s right in there with you.”

Dr. Greg Jicha, a neurologist at Sanders-Brown, says the drug was a huge success during the clinical trial. “It is an antibody that’s been created in the laboratory to remove, dissolve the amyloid plaques that are at the core of Alzheimer’s Disease from the brain.”

Those plaques are abnormal proteins that first develop in areas of the brain connected to memory and mental activities like thinking.

Dr. Greg Jicha of The Sanders Brown Center on Aging

Dr. Greg Jicha of The Sanders Brown Center on Aging

Dr. Jicha cautions this drug is not a cure, but a critical step forward to finding one. He says, “Carol’s study and the medicine she was taking turned out to be a huge success. Really leading right now to the potential first disease-modifying therapy. Not the eventual cure we’re looking for but the first step in that direction.”

In Carol’s case, her symptoms did eventually become worse, and after eight years of caring for her at home, Ron made a very difficult decision. “We vowed we’ll always take care of each other. You know you’ll never be in a home (nursing home). And the hardest day of my life was when I had to take her and drop her off at the home. And then they suggested I not see her for four to six weeks because she had to get into a new routine for her life.”

Carol received 24-hour care at The Willows of Hamburg. On March 28th, 2020, Carol passed away at the age of 76. She and Ron had been married for 58 years.

He says he misses her every day. “That’s hard. She was so much part of my life. That loneliness is there. And the memories are there.” Now 83 years old and in very good health, Ron has dedicated the rest of his life to helping the caregivers of people with dementia.

He attends a caregiver meeting once a month in to pass on what he experienced and learned.

His advice to them?

“Basically, surround yourself with support. Because most people say I’m going to take care of you. Don’t worry. And if you do that, what you don’t realize is you start to lose your life. Because you are of no value to your loved one when you start losing your life.”

Dr. Jicha says what Carol and Ron did in the clinical trial cannot be appreciated enough. Lecanemab is expected to be available to the public sometime this Summer.

He says, “That contribution should never be understated. Carol, I’m sure is looking down at us from wherever she is and has to be smiling knowing that she has helped make the world a better place.”

As for Ron his legacy now includes his openness to help others navigate a cruel disease. “It makes me feel like I’m contributing through the memory of Carol to help others. Do I feel good about doing it? Yea, I do because hopefully, it’s helping someone.”

You can learn more about the Alzheimer’s drug Lecanemab here.

Ron Borkowski was his wife’s main caregiver for eight years while she fought Alzheimer’s Disease. In this conversation, he shares how family and caregivers of people with dementia can better understand what their loved one is going thru, and the support group that he speaks with.

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