Susan's Story: Moving Forward after Guillain-Barré Syndrome

Susan Slovak was at her job as a customer service representative in January 2019 when her feet began to ache. She was also feeling very fatigued. Thinking she was coming down with something, she went home to rest. She told her husband that she was going to bed and laid down. The next day, when she woke up, she was unable to move.

At her local hospital in Waxahachie, Texas, Susan was diagnosed with Guillain-Barré syndrome (GBS). GBS is an autoimmune disorder in which the body's immune system attacks part of the peripheral nervous system. GBS is rare, affecting only about one person in 100,000, according to the National Institute of Neurological Disorders and Stroke, and no one knows the exact cause.

Paralyzed and on a ventilator, Susan was transported to a Dallas-area hospital. From there, she was sent to a long-term acute care facility in Tomball, Texas, so she could be closer to her daughter. Her daughter did some research and learned that TIRR Memorial Hermann would be a good place for Susan to begin her rehabilitation. Susan received care as an inpatient at TIRR Memorial Hermann on two separate occasions and as a TIRR Memorial Hermann outpatient. Her large care team worked closely together to ensure continuity of her rehabilitation.

“When I initially arrived at TIRR Memorial Hermann – The Woodlands, I was completely paralyzed and I could only move my hand a little,” said Susan. “I was really scared, but my therapy team started my rehabilitation from the day I arrived!”

In addition to a physical assessment upon arrival at TIRR Memorial Hermann, Susan also underwent a neuropsychological assessment by Dr. Garland Roberson, PhD, clinical neuropsychologist at TIRR Memorial Hermann - The Woodlands. She said, “I assessed her for both cognition and mood. When she was admitted and throughout her inpatient stays, Susan had significant anxiety, but she did not let it stop her. She showed very mild cognitive impact from GBS. We met several times a week and I helped her to use her coping mechanisms, tap into her strengths and use her resources. When I think of her, I always think about her gratefulness and her deep resilience.”

Susan’s inpatient care at TIRR Memorial Hermann was broken into two phases, with 2 weeks in between her stays.

According to Susan’s first inpatient occupational therapist, Eva Howse-Wygand, OTR, Susan suffered from significantly impaired strength and needed total assistance to roll over in bed or participate in basic self-care. She was unable to maintain herself in unsupported sitting or even use her hands to use a joystick for a power wheelchair.

“We spent a great deal of time working on her being able to tolerate a flat position to roll in bed and to incorporate her arms in functional tasks and self-care,” said Eva.

Initially Susan required the use of a specialized head control for her power wheelchair. Through neuromuscular re-education and strengthening for her arms and trunk, she was gradually able to maintain an upright position and use her hands to control a power wheelchair with a joystick. At that point, she discharged from inpatient care for 2 weeks. She then returned to TIRR Memorial Hermann to continue her inpatient rehabilitation.

Her inpatient occupational therapist, Krista Latimore, OTR, worked a lot on Susan’s independence to push herself in the wheelchair, which would allow Susan to push herself to the bathroom to brush her teeth or wash her hands on her own. In order to do this, they did arm and hand strengthening and endurance training.

“When Susan came back to TIRR Memorial Hermann, her movement slowly started to come back as we worked with her. One example of our OT activities was to work on pinching putty or stabbing it with a modified fork and using different strategies to get a drink,” said Krista.

And in physical therapy they continued to work on balance and activity tolerance, and she made great strides. Her physical therapist, Julie Giardina, PT, said, “By the time she left inpatient care, she was walking, exceeding everyone's expectations!”

Kimberly Lindberg, MS, CCC-SLP, was Susan’s speech-language pathologist for both of her inpatient stays. “When Susan came to TIRR Memorial Hermann for inpatient care, she had a tracheostomy so we began working towards tolerating her Passy Muir Valve (PMV) for longer periods of time,” said Kimberly. “A PMV is a speaking valve that goes on top of a trach tube to allow a person to vocalize more easily. Initially, she could only tolerate the PMV for a few minutes at a time but eventually was able to wear it throughout the day without requiring breaks. This allowed her to move closer to tracheostomy tube removal.”

Kimberly added, “As treatment progressed, we worked toward coordinating her exhalations with the onset of voicing, which allowed her to maximize breath support to enable longer phrases. In addition to breath support and voicing, we worked on improving her memory and critical thinking skills. Before being discharged from inpatient care, she was able to have her tracheostomy tube removed. Overall, she did very well in therapy and made improvements during her inpatient stay at TIRR Memorial Hermann.”

Following her second inpatient hospitalization, Susan transitioned to outpatient therapy to continue her rehabilitation journey.

“With the gains she made as an inpatient, Susan still needed some assistance to perform simple things at home like dressing, eating and cooking meals,” said her outpatient occupational therapist, Ashley Henson, OTR. “We worked a lot on strengthening her hands and her upper body for her to be able to hold utensils with more coordination and to be able to reach more to complete dressing and fixing her hair. By the time she was discharged, she was able to dress, eat, fix her hair and cook simple meals with far less assistance and increased safety.”

Her outpatient physical therapist, Nora Harrigan, PT, DPT, said, “We worked on stretching her ankles and getting her braces for foot drop because her ankle muscles were still weak due to GBS. We also worked on standing balance and strengthening. She progressed to getting independent with a rollator walker at home and then in the community. When she was discharged from outpatient therapy, she was walking with a cane.”

Today, Susan enjoys cooking, cleaning and working in her garden. She celebrated her 60th birthday while at TIRR Memorial Hermann, so she is contemplating returning to work or entering retirement. Either way, she is thankful to TIRR Memorial Hermann for allowing her to have both options available to her while getting back to doing activities she enjoys.

Dr. Chukwuemeka Ibekwe, assistant professor of rehabilitation medicine at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth Houston) and physical medicine and rehabilitation physician affiliated with Memorial Hermann Rehabilitation Hospital – Katy and TIRR Memorial Hermann, said, “Susan's story is one of hard work, dedication and perseverance. She has come a long way and the journey has not been easy; but she remained determined. It is really a testament to the strength of her character and the extraordinary support provided by her family and loved ones."