LAW AND cidp

Mountain Home man wins battle against rare disease

MAGGIE ROTERMUND
Bulletin Staff Writer

Bulletin Photo by Kevin Pieper

Jimmie Johnson, 62, of Mountain Home reflects Friday on his battle with Guillain-Barre Syndrome, a rare disease that nearly took his life. Johnson is expected to fully recover.

Bulletin Photo by Kevin Pieper

Jennie Johnson helps her husband, Jimmie, put his shoes on Friday. Johnson, 62, of Mountain Home recently overcame a battle with Guillain-Barre Syndrome, a rare disease that nearly took his life. Johnson is expected to fully recover.

Jimmy Johnson never gets sick.

At 62, he was the picture of health. His wife of almost 40 years could remember only once during their entire relationship that he had ever taken an antibiotic.

That all changed on Feb. 8.

Johnson, a Mountain Home lawyer, woke up that fateful morning to discover his right hand was numb, feeling almost as if he had slept on it. Johnson went to work, assuming that whatever was wrong would pass. By 10 a.m., his left hand also was without feeling.

Johnson went home for lunch that day, sharing with his wife, Jennie, his unusual symptoms. After meeting with a neurologist and taking a nerve conduction test, the diagnosis was clear: Guillain-Barre Syndrome.

GBS is an inflammatory disorder of the peripheral nerves � those outside the brain and spinal cord. The disease is rare. It impacts only one to two people in every 100,000.

GBS is characterized by the rapid onset of weakness, and paralysis of the legs, arms, breathing muscles and face. It is the most common cause of rapidly acquired paralysis in the United States today, according to Guillain-Barre Syndrome Foundation International.

Two days after diagnosis, Johnson was admitted to Baxter Regional Medical Center for an upper thoracic MRI and spinal tap.

Johnson quickly declined as treatment began. The disorder took over his body faster than the treatments could work. He wasn't able to keep all the medications down, and by Feb. 12, the GBS had almost shut down his respiratory system. He was immediately placed on a respirator and air-lifted to Baptist Health Medical Center in Little Rock for further treatment.

"I was paralyzed over my entire body," Johnson said. "I had a tracheotomy tube in my throat and they taped my eyes closed. I couldn't see, talk, hear or move."

That was Johnson's low point. It lasted for a month and a half.

He was unconscious for most of that period, floating in and out of reality.

"He was semi-comatose," Jennie said. "He would have moments when he was alert but he doesn't remember any of it."

Johnson doesn't remember anything. He awoke on March 22, his daughter Jamie's birthday, to find her and Jennie at his side.

Johnson fought for his life in the Intensive Care Unit of BHMC. To improve his odds, a procedure known as plasma exchange, a blood "cleansing," was started. According to the hospital, the treatment is reserved for those patients with major problems associated with GBS, such as the inability to walk.

Receiving a total of 12 plasma exchange treatments � seven more than the average patient receives; Johnson still had many complications ahead.

Johnson developed pneumonia, underwent four treatments to drain the fluid from his lungs, suffered renal failure, had 24 dialysis treatments and seven blood transfusions. Between the plasma treatments, which lasted anywhere from one to two hours and the dialysis treatments that usually lasted four hours a day, Johnson was sometimes connected to machines for up to six hours each day.

GBS is unpredictable and affects each patient differently. His medical chart reads like an encyclopedia, coming in at 1,201 pages.

Jennie Johnson said after she reads over the chart herself, they plan to donate it to a GBS group for doctors to study and learn more about the disease.

"Every single case is different," she said. "They learn something from each case."

The disorder tends to progress rapidly. In Johnson's case, the disease seems to stem from a common cold virus, typical of GBS. It is said that 50 percent of the cases occur shortly after a microbial (viral or bacterial) infection such as sore throat or diarrhea.

After weeks in the ICU, Johnson began to show progress. Once stable enough, he was transferred to Baptist Health Rehabilitation Institute (BHRI) to begin therapy to strengthen his muscles and to work on overcoming some of the side effects of this disorder.

Johnson and his wife believe the power of positive thinking � the fight � in Johnson led to his recovery.

"He also is doing the work," she added. "You can pray to God for potatoes, but you ought to have a hoe in your hand while you do it."

They also count the hundreds of prayers and warm wishes they received throughout the past months as help along the way.

"We had prayers coming from across the ocean," she said.

"E-mail changed everything," Johnson added. "My sister was in contact with an Australian goat farmer whose case was similar to mine."

His sister also created a scrapbook of Jimmy's life � pictures of him and his family.

"I think that really helped the staff," Jennie said. "They got a glimpse of the real Jimmy, not just a body in the bed."

Johnson's warm demeanor and impeccable manners led him to make several friends in the hospital. One aide stopped by each day to say "hello, sunshine." She even made the effort to visit Johnson once he left the hospital for the rehab facility.

"He was so wonderful, even through all of this," Jennie said through tears. "He never failed to say thank you each time the nurses and doctors came in to do something for him."

Heather Pounds, Johnson's physical therapist, worked with him in Little Rock.

"When he first arrived, he needed total assistance. He was not able to sit up by himself or really do anything alone," Pounds said. "Our goal, at first, was just to get him home only needing the assistance of his wife."

Johnson is on his way to recovery. After weeks of rehab in Little Rock, he is home and going to rehab two days a week. He also supplements his work with therapists with exercises and therapy at home each day.

"We have to let his body catch up with the therapy," Jennie Johnson said. "But his doctors believe he will make a full recovery."

She adds he is now in perfect health, his limbs just need time to heal. He is eating ravenously and enjoying every minute of it.

During the last four months, Johnson and his family have been through a lot. Both Jimmy and Jennie say it only served to bring them and the rest of the family closer together.

"On Aug. 7, my wife and I will be married for 40 years. She has been by my side since this all started and I don't know what I would have done without her," Johnson said. "I would like to thank my family and friends for all of their support. My sister, Barbara, and her husband Mike, have driven down from Joplin, Mo. every weekend since February to see me. Our Reverend, Lee Nirschl, has called to check on me every day, my daughters, Jamie and Jeana and their husbands, Roy and Troy have all been so supportive. I just can't thank everyone enough."

Johnson said his family has done so much for him; he can't wait until the time he can do things for them.

"There's no way to repay them," he said. "I just received it in love and hopefully I can return the favor."

Now on the road to recovery, Johnson reflects on his time in the hospital. He says he was meant to have GBS; it was a trial he was meant to fight and win.

"Everything that could have gone wrong with me did," he said. "I just got mad and kept going."

One upside of his recent tribulations is an improvement in his hearing. Johnson used to wear hearing aides. Now he hears without them.

Since coming home in early June, Johnson enjoys the simple pleasures of being home, especially sitting on his front porch with his dog, Rascal.

"We appreciated life before," Jennie said. "But now we relish every bite, every ray of sunshine, every breath of fresh air and every leaf on every tree around us."

maggier@baxterbulletin.com

Originally published July 5, 2005