Local overcomes disease to become national liaison

When 41-year-old Essie Sundee Ward answers the door, she wears a smile as wide as the room. Blonde, tanned and tall, she glows with health.

It's only when she shifts into the sunlight that the round scar on her throat -- the size of a quarter -- is apparent. And when she moves from the door, there's a hesitancy in her step.

They are the reminders of a disease that almost took her life, one most people have never heard of: Guillain-Barré Syndrome. A neurological disease characterized by a rapid onset of weakness, it only affects one or two people out of every 100,000.

Some people have a mild case. Ward was hit by a full whammy.

A mother of three, Ward woke one Friday morning and noticed her left arm and mouth felt numb, as though she'd slept on them. Over the weekend things got worse. Ward felt weak, disoriented, in pain.

Monday when she tried to get up, she discovered she was completely paralyzed. Even worse, she was barely able to breathe. It was Dec. 31, 1998.

"I was so scared," Ward said. "I didn't know what was going on."

An ambulance rushed her to the hospital. Tubes were inserted up her nose and down her throat. She was put on a ventilator. Once the machine had her receiving oxygen and she was stabilized, Ward was placed in intensive care. The first few nights were touch and go. She later learned her husband, Roger, had been advised she might not make it.

GBS usually starts at the feet and moves up the body to the head. Recovery takes the opposite route. The disease that attacked her almost overnight took its time reversing itself. Ward stayed in intensive care three weeks.

Literally paralyzed from her head to her toes, she couldn't swallow or talk, all she could do was lie in bed, staring at the ceiling and feeling frustrated and scared.

She was unable to tell nurses what she needed. Unable to tell visitors not to hold her hand or stroke her hair -- their touch brought on excruciating pain.

She was also unable to alert anyone her breathing machine had been accidently turned off when it was cleaned. That, she said, was the most frightening part. Luckily, her husband was there, realized she wasn't breathing and shouted for help.

"I remember the nurses calling code and everybody rushing into the room," she said. "I prayed, 'God, please don't let me go. I have three children and a husband to care for.' "

Ward got better, slowly, and was moved into a regular room. She credits her family for their compassion and unwavering love. Their visits would cause her to cry but also steeled her determination to get home.

In June, still paralyzed, but now able to breath unassisted, she went to a recovery center and began physical therapy. Ward came home a few weeks later in a wheelchair, the downstairs den converted into a hospital room for her. But even simple things, like scratching her nose, writing the alphabet and using utensils had to be learned again. Still, motivation comes in many forms.

"I could look out (into the dining room) and I could see all the dust," Ward said with a laugh. "I really, really wanted to get out here and clean it up."

Regular physical rehabilitation got her muscles strong again. Her first unassisted steps "baby steps, really" were cause for an emotional celebration. By Christmas she was walking, hugging walls as she moved.

From there, she joined a gym, lost 88 pounds and now revisits the rehab center to speak to others with GBS. Ward volunteers as Nevada's liaison with the national GBS Foundation. She estimates there are 100 people in the state with the disease.

"This has blessed my life and made it better," she said. "(I've learned) if you have something devastating in your life, you can recover from it. There's hope."

The GBS Foundation can be reached at (610) 667-0131 or on the Internet at www.webmast. com/gbs.