Back at her desk on a Monday morning following a business trip to New York, Rock Fever magazine editor Judy Wieder set to work on a story about Boy George, the pop singer. Wieder soon noticed some tension in her face, and figured it must be the last traces of a 24-hour flu.
The editor left the page she was working on in the typewriter and went to the kitchen of her compact Venice apartment, which doubles as an office. She heated some soup and tried to swallow a spoonful. The broth dribbled out the side of her mouth.
'Something Wasn't Working'
Wieder then examined herself in the bathroom mirror. She puckered her mouth, and the skin bunched on the right side. She smiled; and half her mouth remained stationary. When she felt her left cheek with her hand, "It wasn't numb, but it was like something wasn't working," she said later.
Convinced of the worst--that she had suffered a disabling stroke at age 40--Wieder was reluctant to call a doctor and confirm the feared diagnosis. A housemate came home later in the day, took one look at Wieder's face and insisted that her friend get help immediately.
Every 13 minutes, someone in the United States is stricken by Bell's palsy, a form of facial paralysis triggered when a virus attacks the seventh cranial nerve, also known as the facial nerve. There seem to be clusters of the illness occurring in California, with some of the physicians contacted for this story reporting as many as six current cases. (The county Public Health Department has no record of a recent increase in reported cases.)
No one has been able to establish scientifically that the disorder runs in epidemics; however, one physician who has studied the disease extensively, Dr. Kedar Adour of Kaiser Permanente Medical Center in Oakland, said, "I have a strong clinical impression that minor epidemics (of Bell's palsy) do occur."
At a rate of 20 cases per 100,000 population each year, Bell's palsy is what one doctor called a "very common" illness. But unless a friend or family member had previously been afflicted, most victims--Wieder included--had never heard of the disorder. Because the onset is sudden, panic is the usual reaction.
"Most people don't have any idea what the problem is. They think they've had a stroke or a brain tumor," said Dr. Andrew Geleris, a neurologist at Magan Clinic in Covina. "It's a great relief when I tell patients it (the paralysis) will go away--although it's hard for them to believe it at the time."
Once over the initial fear that they've suffered serious neurological damage, patients still face weeks or even months with a malfunctioning face, accompanied in many cases by mild to severe facial and neck pain. Adding to the resulting anxiety is the fact that there is a small chance that they will not get better. Although odds for complete recovery are excellent if treatment begins promptly after onset of the paralysis (the standard prescription is a course of prednisone, a steroid that is thought to reduce inflammation of the facial nerve), 6% to 12% of patients are left with some permanent loss of function.
"The disease scares people," said Wieder, who in addition to her magazine work is a Grammy Award-winning songwriter. "My friends just feel helpless. It's not like some other illnesses where people can assure you--'Oh, in 10 days it's going to be better.'
"The easiest things become so hard," she added. "The cashier at the store says something to you and you cannot smile back. If you try to smile, you're going to invite discussion, and you just want to get out of line and go home."
So traumatic are the social aspects of the disease that Adour's office builds a psychological component into the treatment plan by having the patient return to the clinic at frequent intervals for reassurance.
In the past, treatment has been somewhat complicated by the fact that Bell's palsy patients are referred to general practitioners, internists, neurologists, neurosurgeons and otolaryngologists (ear, nose and throat doctors). There was little consistency among these specialists in an approach to the illness.
Exact Cause Unknown
Although it was thought to be caused by a virus, the exact cause of the disorder was unknown for many years, according to Adour. Doctors used to routinely perform surgery in an attempt to reduce pressure on the facial nerve, he said.
In 1966, the Facial Paralysis Research Clinic was established at Oakland's Kaiser Permanente Medical Center. Adour, currently chief of the department of otolaryngology, conducted a study in which he showed that surgery was of no use in relieving paralysis caused by Bell's palsy. "You cannot correct viral disease with surgery," he said. Nonetheless, Adour said some doctors continue to perform the operation, which costs $3,500.
Adour also established that a likely cause of Bell's palsy is the herpes simplex, or cold sore, virus. All of 41 adult patients he studied had antibodies to the herpes simplex virus in their blood.
Despite folklore that says Bell's palsy is brought on by cold weather, Adour said his studies found no evidence that this is true. It is possible, however, that winter colds and flu could lower resistence to the virus that causes Bell's.
The disorder occurs three times as often in pregnant as in non-pregnant women, Adour said, and is more common in people over 60. But both sexes and all ages are routinely afflicted.
Stephanie Shane, a 29-year-old Montessori School teacher's aide, said that having Bell's palsy has made her realize just how much stake a person has in his or her face.
"People have always told me I was pretty," Shane, who lives in Covina, said. "The thought went through my mind--I'm not going to be that way anymore.
Big Chunk Out of Life
"All the things you have to do in a day have to do with your face--even saying 'Hello,' " she added. "It (the illness) has taken a big chunk out of my life. I didn't even go running for 16 days, and I normally run 10 or 12 miles, four times a week."
Since the illness doesn't qualify as a disability, most victims are forced to go to work, despite the insecurities that come from looking abnormal. Shane said that reactions from adults have ranged from curiosity to outright rudeness. Children at the school where she works commented on Shane's appearance, she said, and pointed and stared at the black patch she wore over her eye.
Many patients find that the eye on the affected side of the face will no longer blink; and they must either apply eye drops frequently, or wear a patch holding the eye shut to prevent potential blindness.
Shane said she removed her eyepatch to drive home from a friend's house late one night during the holidays. Wrestling with the eyedropper at an intersection, she apparently jerked the wheel in such a way that her automobile attracted the attention of a police officer.
Looking Like a Drunk
The officer noticed that not only was the car lurching but the driver had a classic drunken, slack-faced expression.
The officer pulled Shane over. She explained with a slurred voice (the disease affects the mouth muscles and can impair speech) that she had not been drinking. She said she had Bell's palsy.
"You have what? Cerebral palsy?" The officer asked.
"No, Bell's palsy."
"Is it contagious?" the officer asked, drawing back.
"Not to my knowledge," Shane replied. (Adour confirmed there is no evidence the illness is contagious.) The officer let Shane go without a citation.
Five weeks into the illness, Shane's face began to "wake up," as she put it, with all the sensations that accompany the awakening of a limb that's been asleep--pins and needles, painful twinges.
Eight weeks after the onset of the paralysis, Shane is nearly back to normal. All she has to remind her of what happened to her face is a picture she cut out of a magazine--it's the cartoon character Popeye. During the most trying periods of her illness, Shane said she would look at Popeye's lopsided grin, so similar to the way her own visage appeared in the mirror.
Full-face or half-face, Shane had to remind herself, "I yam what I yam."