‘Living a miracle’: Recovering from rare disorder that causes nerve damage, paralysis

Barbara King, left, works with occupational therapist Kelly Ryan. (Photo by Susan Kahn)

Barbara King, left, works with occupational therapist Kelly Ryan. (Photo by Susan Kahn)

BY SUSAN KEETER

March 16 was a typical day for Barbara King, 79. She cooked meals and did housekeeping for the brothers at Christian Brothers Academy. She took her huskies, Cody and Daisy, on a two-mile walk. That Friday evening, King felt a little off and asked her granddaughter, Amy Windhausen, to spend the night.

King awoke the next morning paralyzed from the waist down.

King’s daughter, Rebecca Mazuryk, called an ambulance, which took King to an area hospital. Pain — which ran from King’s toes to her waist — made sitting in a wheelchair unbearable, so she lay on the floor of the emergency department. King was admitted to the hospital, told she had a virus and released.

Shortly after she returned home, the weakness and pain spread to King’s arms.

Her daughter again called an ambulance. This time,  King insisted she go to Upstate University Hospital’s Community campus. She underwent more blood tests and X-rays. A team of health care providers including  Marc Iqbal, MD, Anupa Mandava, MBBS, and Theodore Koh, MD, worked together in search of the cause of her symptoms.

“The pain was so bad I prayed to die,” remembers King. The painkiller morphine helped.

Getting the diagnosis

On March 23, physician assistant Alisa Albanese identified Guillain-Barré syndrome — a rare condition in which the body’s immune system attacks the peripheral nervous system — as the source of King’s debilitating symptoms (see explanation at the end of this story). Her diagnosis was confirmed by Matthew Glidden, MD, who had King transferred to the care of neurologists at Upstate’s downtown hospital. There, she received intravenous immunoglobulin treatments designed to reset her immune system, so it would stop doing damage.

Fortunately, King was diagnosed and treated before nerve damage spread to her chest, which would have required that she be placed on a ventilator to breathe. King remembers little of the time between diagnosis and her transfer back to the Community campus on April 6 for physical medicine and rehabilitation.

She could barely move. To get in and out of bed, she had to be hoisted by a mechanical lift with support from several staff members. King was unable to move her hands. She used a catheter.

Gradually, with daily physical and occupational therapy, King regained her abilities. She developed her motor skills by learning to stack conical cups, later by planting flowers and chopping vegetables. King strengthened her legs, first by touching her feet to the floor while supported by a swing, eventually by walking on a treadmill, gripping handrails and being supported by a physical therapist.

By the end of April, King was able to get in and out of bed, in and out of a chair, and walk with a walker.

“It was nice watching her do more and more,” remarked nurse Sarah Hirsch, a clinical leader of the rehabilitation unit.

Nearly two months after she woke up paralyzed, King returned to her one-story home in East Syracuse. Therapists from The Centers at St. Camillus provide physical and occupation therapy three times a week, and her daughter and granddaughter rotate staying with her so she has round-the-clock attention. King continues to do exercises and is able to walk with a cane.

King realizes that it may take a year or two to fully recover from the damage done by the Guillain-Barré disorder, but she is grateful for the progress she has made.

“I’ve lived a miracle,” King says tearfully. “I wouldn’t be able to walk if it weren’t for the people in this hospital. They worked their hearts out for me.”

About Guillain-Barré syndrome

Guillain-Barré syndrome is a rare, difficult-to-diagnose disorder that causes the immune system to attack the peripheral nervous system. These nerves connect the brain and spinal cord with the rest of the body. Damage to the nerves makes it hard to transmit signals, so muscles have trouble responding to the brain. The first symptom is usually weakness or tingling in the legs. This can spread to the upper body, becoming life-threatening. In severe cases such as King’s, the person becomes almost paralyzed. Most recover, but recovery can take a few weeks to a few years. The cause of the syndrome is unknown.

— Source: National Institute of Neurological Disorders and Stroke

Upstate Health magazine summer 2018 issue

This article appears in the summer 2018 issue of Upstate Health magazine.

 

About susankeeter

Occasional contributor Upstate’s Susan Keeter has written about and painted Upstate’s Dr. Sarah Loguen, one of the first African American women physicians. Keeter created the horse sculpture in front of the Upstate Golisano Children’s Hospital and illustrated a children’s book on autism, “Waiting for Benjamin.” She’s written for Physician Practice, Upstate Alumni Journal, Cancer Care and Upstate Health magazines. Reach her by email at keeters@upstate.edu or by phone at 315-464-4834.
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