Salt & Light: THE CHANGE-UP

WHEN AMANDA MCKENDREE’S FATHER FELL VICTIM TO A RARE DISEASE, SHE FOUND A WAY TO FIGHT BACK.

In high school and college, Amanda McKendree was something of a softball phenom.

“I held the high school record for a long time in the number of strike-outs. The same with college,” said the former pitcher for Chatham University in Pittsburgh. “Growing up, softball was something that we shared as a family, every night out in the yard after dinner.”

Her dad and coach, Joe McKendree, thought her best pitch was her slider. He called it her bread and butter. McKendree, a Management & Organization associate teaching professor, wasn’t so sure.

Opening a folder, a sheaf of photocopied news clippings and old photos spills across her desk.

“Back then, I’d have said it was my change-up,” she reminisces. The change-up looks like a fastball coming off the pitch, but floats across the plate at a much slower rate than expected. The change is what throws a batter off.

Image after image shows skinny little girls in softball uniforms, lined up in the customary rows, many of the photos with outsized trophies front and center. In all of the photos, McKendree is somewhere in the mix, a bit anonymous among the identical uniforms.

And in all of the photos, there is her dad and coach, standing in the back, stocky and mustached, looking positively hulking in comparison.

“They really sacrificed a lot,” said McKendree of her parents, Joe and Mary. (Yes, Mary and Joseph. It’s been pointed out.) “They sent me to the best camps in Western Pennsylvania so I could work with the best pitchers. We didn’t have a lot of money. Sometimes I remember my dad saying to the coaches, ‘Can you just hold onto this check until Friday?’”

It’s here where McKendree chokes up. It’s enough to contemplate as an adult child all that a parent did so you could realize your dreams. But add to that a huge change-up that life handed to the McKendrees about five years ago — the kind that upends every dream and expectation about your future — and you have a moment that recalls Job.

McKendree’s story about her dad starts with many of the same tragic cues familiar to many families with a loved one who suffers from Alzheimer’s or dementia: Confusion over simple directions. Falling. Apathy. He just wasn’t himself.

But then his story takes a bizarre turn — a turn that ultimately resulted in the most desolate of diagnoses: a rare, fatal disease with no treatment, no cure and not a lot of research.

Shortly after an unrelated surgery, Joe had difficulty expressing himself and understanding simple concepts like right and left. The family quickly realized something was wrong and took him in for testing. Brain scans showed strange “spots,” and the doctor noticed Joe took a long time to process or recall information. Other physical symptoms emerged. He lost his balance while walking. He had blurred and double vision. He was sent to additional medical experts. About six months later, a diagnosis was made: Progressive supranuclear palsy, better known by its acronym, PSP.

“Better known” is a misnomer. PSP is a rare brain disease, affecting about three out of every 100,000 people in the U.S. Few people know about it, and it’s often misdiagnosed. It hurts to read the list of usual symptoms, because the disease affects even the most basic of functions: movement, control of walking, balance, speech, swallowing, vision, thinking, mood and behavior.

Called a “prime of life” disease, PSP results from damage to nerve cells in the brain, with symptoms usually occurring on average after the age of 60. Men are affected more often than women.

“It’s a death sentence, really,” said McKendree. “You can do physical and speech therapy to improve the quality of life. But really, there are no treatments that slow or cure PSP in any way.”

To be sure, the McKendrees have dealt with grief and the exhausting ordeal of figuring out how to care for Joe, who will turn 71 in December. Mary left her job as a counselor at a women’s shelter to become her husband’s full-time caregiver.

“It’s just such a change for what she thought their retirement years were going to look like,” said McKendree. Joe had been a machinist, retired, and then worked for a few years as a corrections officer before deciding to retire permanently.

“My parents began talking about what they were going to do in retirement and where they were going to go. My dad always wanted to travel. He was an avid fisherman and outdoors person. And then the plans changed.”

And then, in some ways, changed again.

In researching the disease, McKendree connected with Cure PSP, and saw the organization’s website often featured grassroots fundraising events. One little boy collected cans and water bottles. Another individual organized a bike tour with friends.

“I started to think, ‘Well, there’s definitely something we can do here. But what?’”

Softball. Of course.

“It’s a perfect fit. It’s what connected me to my dad, and was one of his great loves.”

On August 12, the Strikeout PSP Softball Tournament raised $3,000 for Cure PSP. The tournament was held on the historic 1889 Park in South Fork, Penn., where Joe played as a boy. Organizers gave out prizes and held raffles, and all in all, had a fun day. The logo for the event pulled together flames from Joe’s softball nickname, “Smokin’ Joe,” and the colors and stars from his time serving in the Army and National Guard.

Joe, wearing a “Hustle, Hit, Never Quit!” T-shirt, threw out the first pitch.

McKendree plans to continue fundraising with a Strikeout PSP event next year that includes organizing a large group from the Johnstown and Pittsburgh communities to attend a Pittsburgh Pirates game and participate in PNC Park activities.

“For this first year, it’s been mostly education and outreach, involving people I know in the community, people who know my dad,” she said. “He’s the starting point to say, ‘Let’s become more educated about this disease and contribute to research for better ways to detect it or manage it or cure it.’

“I mean, that’s the ultimate hope.”

To learn more about PSP, visit www.psp.org. The Strikeout PSP tournament website can be found at www.strikeoutpsp.com.

Salt & Light is a continuing series featuring faculty, staff, students and alumni who live out Christ’s charge to make a difference in the world. See bizmagazine.nd.edu for additional profiles.

“You are the salt of the earth...You are the light of the world...” Matthew 5:13-16