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A paralyzing nightmare

Saugus choir director for Our Lady of Perpetual Help church relies on prayer, community support

Posted: June 18, 2010 8:50 p.m.
Updated: June 19, 2010 4:30 a.m.

Kirk Smith watches his wife, Jo Ann Smith, move her hands, in their Saugus home on Tuesday afternoon. In February, Jo Ann, stricken with Guillain-Barré Syndrome, which left her paralyzed from the neck down. She also lost her ability to speak while in the hospital. Now she is slowly recuperating and awaits for her chance to sing again so she can ...

 

It started with some dizziness and then a stumble at choir practice.

A couple of days later, she felt the tingling in her fingers and toes.

Worried she was suffering a stroke, Saugus resident Jo Ann Smith had her husband drive her to urgent care.

It was not a stroke. She was told to see a neurologist.

The next day, she could barely walk. She couldn’t sleep. The tingling crawled up her legs and arms.

A neurologist confirmed: Smith had contracted Guillain-Barré Syndrome, an inflammatory disorder of the peripheral nerves.
Guillain-Barré results from inflammation and destruction of protective sheaths around some types of nerve fiber, according to a website dedicated to the syndrome. It brings a rapid onset of weakness, and often paralysis of the legs, arms, breathing muscles and face.

No one could really say what triggered the attack. It could have been a previous viral or bacteria infection — perhaps the ear infection she had contracted a few weeks before.

But Kirk, 60, and Jo Ann, 61, hardly had time to wonder how. The syndrome, doctors told them, is unpredictable; their worries focused on Jo Ann’s future.

The night after she was admitted to the hospital in February, Jo Ann remembers waking up at 1:40 a.m. unable to breathe.
She knew she needed a respirator.

 “I was scared; I was just really, really scared,” said Smith, unable to hold back tears as she sat in a wheelchair on Wednesday.

Three days after she was admitted to the intensive care unit in February, Jo Ann had lost all control over any body part aside from her eyelashes. Kirk, who kept a journal of the experience, said Jo Ann looked as if she was in a coma her first two weeks in the hospital.

Sixteen days into her stay in intensive care, doctors performed a tracheotomy on Jo Ann after she went into respiratory failure.

Relying on God
Smith has directed the choir at Our Lady of Perpetual Help Church in Newhall since 2000. Her singing in the choir dates back to 1984. She is a graduate of the Curtis Institute of Music.

Jo Ann paused for a moment on Wednesday while sitting in her Saugus kitchen. Her eyes welled up. Her fear while she was in the hospital, she admitted, was that she would never sing again.

“A singer is who I am,” Smith said, her voice shaking. “I’ve sung in choirs since I was 8 years old.”

Singing was out of the question as Jo Ann lay immobile in a hospital bed. When she had something important to communicate, Kirk would slowly recite the alphabet.

When he said the letter she wanted, she would blink. And then again, and again, until Kirk figured out each word.

She couldn’t move; she couldn’t speak. But there was one thing she could do every day: pray.

Friends gathered around, her husband stood by her side, and together they prayed.

“You can’t move,” Jo Ann said later. “You know it’s not up to you at that point. You’re going to fight but you have to rely on God.”

Smith began to tear up again as she reflected on the support and love she received from her choir and church members — some of whom she had never met before.

One parishioner sent a quilted blanket embroidered with a rosary. Another sent a prayer shawl with a rosary.
“I used that prayer shawl every day,” she said.

Humming in the rehab center
After four or five weeks of treatment, which included intravenous protein injections, Jo Ann slowly started to show signs of progress.

One day, she could lift her index finger. The next day, she could maybe lift two fingers.

The majority of Guillain-Barré patients eventually return to a near-normal, if not normal, lifestyle, but many endure a protracted recovery and some remain wheelchair-bound indefinitely, according to the Guillain-Barré Syndrome Foundation website.

On June 10, Jo Ann came home in a wheelchair. However, she is expected to walk on her own again and enjoy a fully restored voice after physical therapy.

Jo Ann is careful not to strain her voice, but she has begun to sing softly.

 “I remember the beginning of May when she starting humming in the rehab center,” Kirk said. “It sounded like her again, not like damaged vocal cords.”

She has no doubt that once her voice fully recovers, she will be returning as choir director at Our Lady of Perpetual Help.

“They’re waiting for her,” Kirk said.

Blessed Kateri Catholic Church will host a concert sponsored by friends and colleagues to honor and benefit Jo Ann at 4:30 p.m. June 27.

To learn more about Guillain-Barré syndrome, visit www.gbs-cidp.org.

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