Bethany Sproul LeBrun with her son, Nolan, 4, and daughter, Maya, 8, outside her workplace at the Buker Center recently in Augusta. Andy Molloy/Kennebec Journal Buy this Photo

AUGUSTA — About three years ago, Kathy Sproul was diagnosed with a rare, terminal neurological disease — progressive supranuclear palsythat has no cure and progressively takes away the patient’s abilities to function.

She had gone undiagnosed for several years, and for the last three years of her life, Kathy largely refused to discuss her terminal diagnosis, choosing instead to focus on her faith and family.

Kathy Sproul

The one aspect she’d talk about was her insistence that upon her death her brain tissue be donated, through the Cure PSP Foundation, to the Mayo Clinic for research into a cure and treatment.

“She was hopeful that by sharing the donation of her brain tissue that maybe her grandchildren, her great-grandchildren, will have a treatment or a cure,” said Bethany Sproul LeBrun, one of her two daughters and director of Augusta’s child care programs. “For her that was one way she felt, because she couldn’t be there (in person after her death) for her family, that she, a grandmother through and through, could make a difference, for some other grandmother out there.”

LeBrun said she prays “that in my young children’s lifetime that they live to see a cure for PSP and remember that their Grammie helped spread awareness to help others. That sums up my mom, insisting her last act on Earth be that she help others.”

Don Sproul, Kathy’s husband of nearly 40 years, said his wife starting having unexplained memory and balance issues as many as 10 years ago. For years doctors were unable to come up with a diagnosis, until 2018 when a doctor found an indicator of the disease in an MRI of her brain. He said the best they could do was treat her symptoms, which are similar to those of Parkinson’s disease.

“It was a downward spiral,” Don said of his wife’s progressively deteriorating condition.

He said there were periodic declines, which patients never recover from, though those were spaced apart by plateaus. He said her last decline was extremely rapid, starting about three weeks ago, leading up to her death April 9 at age 69.

Kathy, who was of strong faith, was able to attend Palm Sunday and Easter Sunday at her church, Water of Life Lutheran Church in Newcastle, in person. She wasn’t able to get out of bed since the Monday after Easter.

She died in her home of 40 years, in the care of her family, and had visits from grandchildren the night before.

Don said he hopes raising awareness of the disease could help some people who have it — or whose family members have it but haven’t been diagnosed, to prompt them to explore whether they have the same disease. He said not knowing what was wrong with Kathy was hard on the family. Though the terminal diagnosis was not a good one, Don said they were at least grateful to know what was wrong.

Sproul’s family has had some help spreading awareness of the rare neurodegenerative disorder that affects brain cells that control balance, walking, coordination, eye movement, speech, swallowing and thinking from LeBrun’s co-workers in the city of Augusta.

One weekday the week before Kathy Sproul died, LeBrun — who was out of work to help care for her mom — stopped by the Buker Community Center where the city’s child care program is located to check on some things. She found that her co-workers had put up PSP awareness signs in every window of the center, each with a teal ribbon inscribed with “PSP Awareness” and “In This Family No One Fights Alone.” LeBrun later discovered the same signs had also been placed in the windows of city parks and recreation trucks.

“It was so touching and so sweet,” she said of her co-workers’ support. “They went through every window in the entire Buker Community Center, and there were more in boxes for families to take home with them. It means so much.

“Because if it gets one person to kind of stop and think about what (PSP) is, at least it gets it out there in the conversation,” LeBrun added. “It makes my heart ache just a little bit less, seeing the ribbons on city trucks driving by.”

Leif Dahlin, the city’s community services director, said LeBrun’s co-workers put the signs up to help with efforts to raise awareness about the disease that took Sproul’s life. He said LeBrun is a great human being who has been there to help make her mom’s life as comfortable as possible.

According to her obituary, Kathy worked in the medical field as a biller and officer manager. She had a son, Jason Fuller of Manchester, and two daughters, LeBrun and Melanie Lajoie, of Augusta. While growing up LeBrun said their Newland Avenue home was a second home and gathering place for all the neighborhood children. She said that has continued with the family’s eight grandchildren.

Kathy was a regular at the city’s Little League fields and anywhere else her family could be found, rooting on her kids and then her grandkids.

“Her true calling was to be a grandmother,” Don said of his wife. “The saddest thing for me is she didn’t get to have more time with them, to see them grow up see them get married. But the memories they’ll have of her are wonderful.”

The family was able to honor her wishes and following her death, her brain tissue was on its way from MaineGeneral to the Mayo Clinic in Florida within six hours.

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