Jeff’s Journey of Healing & Hope After a Rare Diagnosis

Body

Jeff, age 60, was a business owner whose role often took him around the globe. Besides being a busy entrepreneur, Jeff enjoyed skiing, biking, and playing guitar.

He was in Chicago for business when he developed GBS, a rare disorder in which the body’s immune system attacks the nerves, often without warning. The resulting nerve damage can cause muscle weakness, and in some cases, paralysis.

After three weeks in an acute-care hospital, Jeff arrived at Shirley Ryan AbilityLab, partially paralyzed and in pain. While he could move his hands a bit, they were too weak to even push a button on his smart watch. He couldn’t lift his arms or legs, and he couldn’t sit up.

Body

GBS was accompanied by a host of complications that made rehabilitation difficult. Jeff had an irregular heart rhythm, low blood pressure and nerve pain. Keeping these symptoms under control required the right balance of activity and exertion.

At first, Jeff couldn’t stand — even with two people assisting — and required a lift to get in and out of bed. His physical therapist (PT) used a body harness connected to an overhead gait track to help him get started. Supporting his weight in this way enabled him to safely practice walking. Walking is essential for developing strength and endurance, and improving balance.

Jeff also couldn’t eat or perform basic self-care. One of the most difficult, time-consuming and painful tasks was getting dressed.

Our Pain Management Center experts stepped in and taught Jeff how to use meditation, mindfulness and deep breathing to relax his body and mind. A neuropsychologist helped him develop strategies for managing anxiety and fear. Together, these tools allowed him to manage his pain and participate in therapy.

Body

When Jeff became frustrated by the slow pace of his recovery, his therapists reminded him of how far he’d come.

One day, as Jeff and his PT practiced standing using the parallel bars, Jeff stood straight up on his own.

Through perseverance, he had gained enough strength in his arms and legs to get up without help. “I felt like I was soaring!” said Jeff. “I never felt so tall in my life.”

Body

Music has always been an important part of Jeff’s life. He’s been singing and playing guitar since he was a child and feared he’d never be able to do so again.

To help him recover that precious ability, his occupational and music therapists collaborated to fit him with an adaptive device. It supported his arm so that he could form some chords. Although his right hand was still weak, he managed to strum the strings.

With a hoarse voice, he sang the first few lines of Van Morrison’s “Tupelo Honey.” Jeff, and everyone else in the room, wept with joy.

After ten weeks at Shirley Ryan AbilityLab, Jeff could feed himself, brush his teeth, sit up on his own and walk short distances with guidance. It was time to go home to North Carolina for the next phase of his recovery.

Body

Back home, Jeff continued building on his gains and made even greater strides. Five months after discharge, Jeff returned to Shirley Ryan AbilityLab to thank his care team. Although he left in a wheelchair, he returned walking on his own. He even played his guitar and sang at one of the hospital’s board meetings.

He credits the love and support of his family, as well as the expertise and kindness of his care team, for getting him through this difficult time.

“I felt wholly cared for — it was just off the charts,” Jeff said. “These were people who really cared. They provided so many types of care, addressing all my needs at once. I can’t imagine being without any of those things. They were critical to my recovery.”

Although he still experiences GBS symptoms, it hasn’t slowed him down. He danced the night away at his son’s spring wedding, sailed in the summer and skied with renewed joy that winter.