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Faith helps medical pioneer stay positive
archived from: 2013-03-08
by: Paula A. Smith

Subject of research project speaks at Catholic school

When Jan Scheuermann of Whitehall felt she wasn’t doing a good job with robotic tasks, her doctor reminded her that, considering she is the only one in the world providing this work, she was doing just fine.

Scheuermann gave a presentation Feb. 8 to sixth-, seventh- and eighth-grade students at her home parish, St. Elizabeth of Hungary in Pleasant Hills. She spoke with students about her life as a quadriplegic, the research project she is involved with and the importance of faith, which she learned at the school from the Sisters of Mercy.

“In the early days of my illness, when we didn’t know what was wrong, I tried to hold fast to my faith,” she said. “One thing I always did was count my blessings. I thought I was going to pass away. I knew God was there in my head, but I just couldn’t always feel him in my heart.

“I never lost faith in God. He was with me all the time. I always felt his presence — sometimes not always as I wanted to, but I kept praying. I prayed for other people, too, because I knew they were praying for me.”

It is this spirit of thankfulness that her mother, Maureen Scheuermann, sees in her daughter.

“No matter what anyone does for her, she thanks them,” Maureen said. “She’s a very positive person. She knows people feel they need to help her and she allows them to do this for her.”

Jan was a 36-year-old wife and mother living in Lancaster, Calif., with her husband, Robert, and their children, Elizabeth and Michael, ages 2 and 4, when she began to experience weakness in her legs that eventually spread to her arms.

At first, the doctors thought she had multiple sclerosis, and she went from using a cane to a wheelchair to an electric wheelchair. Two years later, she returned to Pittsburgh and was diagnosed with a genetic disease called spinocerebellar degeneration that deteriorates the connections between the brain and muscles, resulting in paralysis from the neck down. For the past 12 years she has only been able to move muscles in her face and a few in her neck.

“I really tried not to feel sorry for myself,” she said. “I never asked, ‘Why me?’ I asked, ‘Why not me?’”

Father Dale DeNinno, pastor of St. Elizabeth, presided at the wedding of Jan and Robert when he was a parochial vicar at the parish. He is always inspired by her courage and humor and calls her a “living sermon.”

“There is a cross laid on her shoulders and she carries it with great determination and fortitude,” he said.

At 53, Jan is making medical history. She is involved in a research study conducted by a University of Pittsburgh School of Medicine and UPMC team using brain-computer interface technology and training programs.

According to a UPMC news release, Jan underwent a six-hour surgical procedure Feb. 10, 2012, in which Dr. Elizabeth Tyler-Kabara, co-investigator and UPMC neurosurgeon, placed two quarter-inch-square electrode grids with 96 tiny contact points on the surface of her brain in the area that normally controls right hand and arm movement. Jan is the first and only person in the world to have two electrodes implanted. The sensors were wired to two computer connections, called pedestals.

After she thinks about a task, brain signals are picked up by the electrodes and translated with a computer to a robot arm that performs the activities of reaching, grasping, lifting and moving items. She is the first person to control a robot arm in seven degrees of movement using her thoughts.

Findings reported in the Dec. 16, 2012, online issue of The Lancet medical journal by Andrew Schwartz, senior investigator and professor, department of neurobiology, University of Pittsburgh, and co-authors, reported that after 13 weeks movements were routinely performed and her ability improved at a rate of 91.6 percent.

Despite associated risks with surgery that concerned her family, Jan always trusted that there was a purpose and a reason for her illness. She has part of the answer now because her illness brought her to just the right spot after moving to Pittsburgh.

“I was never angry with God. God gave me life and never said you will be exempt from hardships or troubles,” she said.

Calling her experience a “perfect storm,” she feels everything came together for this purpose.

“I prayed for the surgeons’ hands to be guided. God wanted me to go through with this surgery. Before surgery, I thanked God every morning for another day and loving me. Today I thank God every morning for another day, loving me and being part of the research.”

Jan is honored that her role in restoring functions for paraplegics, quadriplegics and amputees, including wounded military veterans, will be studied.

“The point of this is that it brings hope to the handicapped, people with spinal cord injuries, and that technology is changing the way we live,” she said. “It is going to lead to more independence and a happier life. The one thing you lose is control. A wheelchair like mine and Hector (the name she gave the robotic limb) will give more control.”

Students asked Jan many questions. Austin Bechtold, 11, said, “God can do anything for you and, as long as you keep faith, anything can happen.”

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