Stories of Hope: Robert Koonce

With GBS, the body makes abnormal nerve-attacking antibodies that lead to numbness or tingling, and the loss of reflexes and weakness – sometimes severe enough to affect the muscles needed to breathe. Symptoms usually start in the feet and work their way up.

The test for GBS is a spinal tap that shows high protein in the spinal fluid without an increased white blood cell count.

But Robert’s spinal fluid was normal. And the path of his symptoms was reversed.

Heavily sedated to tolerate being on a ventilator, Robert couldn’t move or open his eyes. But he could still hear, and later recalled a man’s voice saying, “We know you’re in there.” It was Dr. Grossman.

By that time, Robert had already completed a course of intravenous immunoglobulin (IVIg), which suppresses the production of harmful antibodies. With no significant improvement, Dr. Grossman ordered a different treatment.

Plasma exchange uses a dialysis-like machine to remove a patient’s plasma (the part of blood that antibodies are in) and replace it with plasma from blood donors.

Robert slowly started improving.

Later, a repeat spinal tap and a test for specific MFS antibodies confirmed the diagnosis.

Robert left MetroHealth’s ICU on May 30. After some time at a long-term acute care hospital, he arrived at the MetroHealth Rehabilitation Institute’s Old Brooklyn campus on June 12. His team included occupational therapist Gilian Gulan and speech therapist Larisa Roth.

During Robert’s second session, physical therapist Ann Hardebeck looked him in the eye. “Today, you’re going to stand,” she said.

He didn’t believe her.

Robert took four small steps – a total body endurance workout. Then, he had what Hardebeck described as tears of joy (he called it “bawling like a little baby”).

“That was the moment I felt that I really would walk out of here,” he said.

Doctors also prescribed art and music therapy sessions.

“Robert said he wanted to use art to express what he had gone through in the hospital,” said Briannia Love, an art therapist at the non-profit Art Therapy Studio who sees patients at MetroHealth three days a week.

Over six sessions, he created drawings and other art pieces that helped build strength in his hands and arms, and work on planning and sequencing.

Music therapist Dwyer Conklyn incorporated Robert’s love of traditional Irish music in the sessions that included a piano, keyboard, drums, bongos and tambourines.

Exercises with the instruments tested Robert’s finger dexterity, grip strength, range of arm motion, and hand-eye coordination. His hands, arms and shoulders needed to catch up with the progress in his legs.

Robert also did vocal exercises to help him clear mucus from his tracheostomy tube, and to increase lung capacity and breath support.

Robert’s five weeks of inpatient therapy ended on July 19.

A couple weeks later he started outpatient rehab, working with occupational therapist Megan Anderson and physical therapist Lisa Garber.

In August, Robert flew to California with the family for his oldest son’s college graduation. He also attended Mass for the first time since his hospitalization. Throughout his recovery, Robert has leaned on his faith and family.

Since October, Robert has been back to work part-time at the Catholic Diocese of Cleveland, where he works in strategic planning and special projects for the Office of the Bishop. He has regained full range of motion in his arms, is walking more (a favorite outdoor trail is 1 mile) and is driving short distances again.

By mid-November, he had wrapped up the last of his PT and OT sessions.

“MetroHealth saved my life medically and allowed me to get back to my life physically,” he said.