Courtesy David Rompf
Rompf: 'Defying expectations, my body had embarked on a blundering, self-destructive path'
HEALTH TRIUMPH

Tipping Point

Life with Guillain-Barré means muscle weakness, sudden falls and episodic paralysis. Years after my diagnosis, I'm back on two legs again.

 
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Seven years ago, on a trip to Vietnam, I stepped into the warm water at Nha Trang beach, eager to relish my first swim in the South China Sea. But I didn't get very far: a knee-high wave—hardly a wave at all—instantly toppled me. As I tried to stand, my legs buckled, and my traveling partner had to help me up. Besides feeling off-kilter, I was perplexed. A devoted lap swimmer for 15 years, I had powerful legs that propelled me past many younger men at the pool. Now all my strength seemed drained away, washed out to sea by foreign currents.

As sand and foam swirled around me, I wondered if the rice wine mixed with turtle blood, served by my Vietnamese hosts the night before, had made me sick. Or was I merely overcome by a case of extreme travel fatigue? Reassured by my health-conscious regimen—lean diet, vigorous exercise and meditation—I dismissed thoughts of anything more serious. Both sides of my family boasted hardy long-lifers. My great-grandmother chopped wood until she was 85, then quit out of boredom. A year earlier, when I was 39, my doctor had given me a physical and declared, "You're still considered a young man."

But then I took another inexplicable spill in Vietnam. As I rose from my seat in a village café, my legs failed again. Out of stubbornness and denial, I didn't seek medical attention until returning to California, two weeks after my first fall at the beach.

Back at home, I could barely stand in the emergency room. My legs and hands were entirely numb. The ER doctor concluded that I'd contracted an exotic virus in Asia. "I'll have the infectious disease specialist call you," he said, signing my discharge papers. No one ever called. The next day I fell on my face when the lower half of my body seemed to evaporate without warning.

Using my weakened arms, I managed to push myself up from the floor. I called my friend Luci, whose twin sister Judi is a pediatrician. Luci took notes, relayed the information to her sister and called me back an hour later. "Judi says it might be Guillain-Barré syndrome," she said. "And if it is, it's serious." Luci had spelled out the unfamiliar words, which sounded, to me, like the name of a French-Canadian pop star. Ghee-yawn Bah-ray. I searched the Internet and found stories that mirrored my own: numb limbs, muscle weakness, decimated stamina and sudden falls. Guillain-Barré, I learned, was a rare disorder in which the body's immune system goes haywire and attacks the peripheral nerves, thwarting conductivity to and from the brain. Patients with the most severe cases suffer permanent paralysis or require respirators.

One online bulletin board contained tale after tale of misdiagnosis. In 2003 a team of immunologists published a retrospective diagnosis of Franklin Delano Roosevelt in the Journal of Medical Biography concluding that FDR probably had Guillain-Barré, not polio as previously thought.

 
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Member Comments
  • Posted By: kmanes @ 11/05/2008 4:25:07 PM

    Comment: My father had it so severe that he was in the ICU at the Cleveland Clinic for over 1 month; months of rehab follwed afterward to learn how to walk, write, etc. His fine motor skills are limited - shaky handwriting, unable to run or balance, walking is very "stiff." He had it over 15 years ago, and I am glad that he is around today. His motor abilities are not like they used to be in his "normal" state, but he is mobile and enjoying life.

  • Posted By: twice @ 10/31/2008 12:59:32 PM

    Comment: 2nd time about 20 years later, I do want to scare folks but I have experienced the on-set of Guillain-Barre twice. The first time was minor with effects in the legs, arms, and shoulders. The second time I became completly paralized except for my internal organs. It took a lot of relearning, including walking and using my arms, hands and fingers. I do hope they find a way to prevent this, but in my case it came on very fast, within one day.

  • Posted By: my3girls @ 10/31/2008 9:51:34 AM

    Comment: my daughter contracted Guillain-Barre a month ago. I am happy to say she will be home tomorrow using a walker. This was the scariest moment in my life not knowing what was going on with my 15 year old. it happen within a weeks time. Her doctor said it was a virius just let it run it course. I am glad i was not happy with that and went to the emergency room. I am thankful the ER doctor knew after the examination and wasted no time because it started to affect her breathing. She was in ICU for days and after her second treatment she started a rapid recovery and it hasn't slowed down.

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