Whitehall Citizen of the Year honoree becomes a media sensation
By Stephanie Hacke
Published: Wednesday, Aug. 28, 2013, 9:01 p.m.
Jan Scheuermann once killed off the St. Elizabeth of Hungary priest, just months before he was set to officiate her wedding.
As a murder mystery party planner, Scheuermann wrote parts for people attending the events she hosted in the South Hills and was in the process of writing a book based on one of her shows.
Yet, a genetic condition, spinocerebellar degeneration, left the Whitehall mother without the use of most of her extremities since the late 1990s.
Working with the University of Pittsburgh and UPMC researchers, Scheuermann has been a part of a study where she has used only her mind to control a robotic hand — which has fed her chocolate and put lipstick on her face.
“It was thrilling, after not being able to move my arms for nearly 10 years. It proved that just because you can't move your limbs, your mind doesn't forget how to do it,” said Scheuermann, 53, of Whitehall.
Her efforts have caught the attention of the international media.
Scheuermann debuted her story on “60 Minutes,” and has since appeared on BBC and television in Japan and North Africa.
Whitehall leaders on Saturday recognized Scheuermann as the borough's 2013 Citizen of the Year. The award recognizes a resident who has received attention outside of the borough, and therefore, brought attention to the community, Mayor James Nowalk said.
“This is the equivalent of Neil Armstrong walking on the moon for people with disabilities and it's all because of Whitehall Borough's Citizen of the Year, Jan Scheuermann,” Nowalk said of her participation on the study.
The recognition was an honor for Scheuermann, she said.
“I realize what we do is groundbreaking technology. But to me, this is just daily life,” Scheuermann said. “To be recognized for it is unexpected and truly very touching.”
Scheuermann grew up in Baldwin Borough, behind St. Elizabeth parish.
Her father owned Danny Donuts on Route 51, where she started working in sixth grade, she said.
After graduating from the University of Pittsburgh in 1983 with a bachelor's of arts in nonfiction writing, Scheuermann started a murder mystery party business, Deadly Affairs, where she would write scripts for local events, incorporating those that were set to attend in the show.
In the late 1980s, she and her husband, Bob, moved to Lancaster, Calif., where she opened a new branch of Deadly Affairs.
One night after a show, Scheuermann said, she noticed something wasn't right.
“My legs got stiff. I felt like I was dragging them behind me,” she said. “I wrote it off.”
Then, it started occurring earlier and earlier and Scheuermann went to see a doctor.
The tests were negative and the only diagnosis she had was possibly multiple sclerosis, she said.
The family of four, with daughter Elizabeth and son Mike, returned to Pittsburgh in the late 1990s.
Scheuermann wanted to be near family, in case she didn't survive, she said. She wanted someone to be there to care for her children.
She was later diagnosed with spinocerebellar degeneration.
“What it is is the messages from my brain are not getting through to my limbs,” Scheuermann said.
By 2002, Scheuermann said, she had lost all use of her hands -- the last remaining function she had. Now, all she has is the use of her head and neck.
Her electric wheelchair gives her control with her chin.
Going through all of this, Scheuermann remained strong.
“It didn't change her love of life. It didn't change her competitive spirit,” Nowalk said. “It didn't change her desire to want to help people.”
After her youngest child graduated from high school, Scheuermann attempted to complete her book again. When she was about two-thirds through, her computer crashed.
As she struggled with other things, she said, she received an email from a friend with a link. It was video of Tim Hemmes, of Butler County, who, after being paralyzed, was part of a Pitt research study and used a robotic arm to touch his girlfriend's hand.
At the bottom of the page, there was a phone number.
“I was jumping out of my seat as much as I could be — which was not at all,” Scheuermann said, laughing. “I said, ‘call them.'”
The study included surgery, where two electrodes were placed on Scheuermann's brain.
She underwent the surgery on Feb. 10, 2012, knowing she would never be able to take the robotic arm home with her, she said. The research she was participating in would be to help others in the future, she said.
“People will have this in their homes and use it to put on their makeup someday,” Scheuermann said. “It will be amazing independence for handicapped people.”
When she started the project, the researchers asked her if she had any goals, Scheuermann said.
As a woman, she said, she wanted chocolate and to be able to pick it up and eat it on her own.
After successfully moving blocks, cardboard rolls and other items across the table, FDA clearance was needed for the chocolate endeavor, Scheuermann said, because she is not allowed to physically interact with the arm, she has fondly named “Hector.”
After receiving the clearance, late last year, she attempted the mission and was successful. Next was string cheese and other items she had packed in her lunch bag.
As for what else she's been working on, well, that's a secret - at least for now.
All of this has inspired Scheuermann to finish the murder mystery book, “Sharp as a Cucumber,” which she started 16 years ago. And even at Whitehall's Community Day, as she received her award, she proudly talked about her book.
The book is available on the Kindles in Whitehall Public Library.
Stephanie Hacke is a staff writer for Trib Total Media. She can be reached at 412-388-5818 or firstname.lastname@example.org.
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