"the Last of the Closet Issues"

By Anastasia Toufexis

Ten years ago, a tumor was discovered on Paul LaPorte's spine. It was benign, but it caused a symptom that he kept a darker secret than he would have had the diagnosis been terminal cancer. The growth pressed on the nerves to his bladder, causing it to empty unexpectedly. Surgery seemed too risky, and LaPorte's life became consumed by the harrowing effort to hide his embarrassing condition. He quit jobs and refused advancement. "One employer wanted to promote me to a sales position that meant traveling all over Canada," recalls LaPorte, now 36 and a factory worker in Windsor, Ont. "I just couldn't cope with that. 'It' was always on my mind." His fear forced him to curtail family and social activities. "I went out only when I had to," he confesses. Not anymore. Two years ago, LaPorte read about a self-help group in Wilmette, Ill., called the Simon Foundation. Desperate, he and his wife took a six-hour train trip to attend a meeting. "I was elated," says LaPorte, who at last can enjoy evenings out with friends who know his secret. "Back then I thought I was the only one in the world with this problem."

Most of the estimated 10 million to 12 million Americans who suffer from incontinence still feel that way. "We talk about rape or homosexuality but not about loss of bladder and bowel control," observes Simon's founder Cheryle Gartley. "It's the last of the closet issues." But the door is slowly opening. This month in Boston, researchers gathered to discuss promising medical remedies at a joint meeting of the International Continence Society and the Urodynamics Society. Encouraging, too, are recent developments, from newsletters to helpful products that greatly ease the daily burden of patients. Today's message: incontinence is sometimes curable, almost always manageable.

Those tidings are particularly welcome to the elderly. About 13% of all people over 65 have urinary incontinence, and twice as many women as men are affected, according to preliminary findings of a Harvard Medical School study. (No similar study exists on loss of bowel control, though estimates suggest the figure is far lower.) Nursing homes spend $8 billion a year to cope with the bladder problem, reports Gerontologist Neil Resnick of Boston's Beth Israel Hospital, "more than is spent on the general population for dialysis and coronary-bypass surgery combined." Many younger people are victims, including children with persistent bed-wetting trouble. Incontinence, which can range from slight leakage to total absence of control, can be caused by such illnesses as multiple sclerosis and cancer, as well as by damage to the spinal cord, congenital defects, an enlarged prostate or a weakened sphincter muscle around the opening of the bladder. In the last case, any sort of physical stress -- jogging, jumping, even sneezing or laughing -- can trigger an accident.

Despite its prevalence, only one in twelve sufferers seeks help, says the Simon Foundation. Older people are particularly wary of disclosure. Explains Nurse Lynda Austin, an Atlanta geriatrics consultant: "When a family discovers the problem, it's often the impetus for institutionalization." Victims devise homemade solutions instead -- menstrual pads, rags and tissues in underwear or rubber balloons over the penis. The stigma for all is intense. From early childhood a sense of self-control is deeply connected to successful toilet training, notes Psychologist Ronald Rozensky of Illinois' Evanston Hospital. "Losing that control as adults sets up a downward spiral of helplessness, shame, guilt and withdrawal."

Now support groups are emerging to counter that spiral. In the New York City area, Continence Restored arranges lectures and meetings. HIP (Help for Incontinent People), based in Union, S.C., issues newsletters and audiocassettes; HIP's mention last month in "Dear Abby" drew 90,000 inquiries. The Simon Foundation, beyond offering a newsletter, an 800 phone number and seminars, has put out a book titled Managing Incontinence and a touching, enlightening videocassette called The Solution Starts with You.

Medical literature has been woefully slight, but doctors now point to a number of treatments, some as simple as a series of exercises to strengthen pelvic muscles, others involving surgery to correct an enlarged prostate or weak sphincter. New experimental medications may help block errant signals to the bladder's nerves or relax overly taut bladder tissue. Artificial sphincters opened by squeezing a small pump have been successfully implanted for more than a decade. Scientists at the University of California at San Francisco are testing a bladder pacemaker. Using a remote control, the patient can send signals to implanted electrodes, activating nerves to the bladder. D. Wayne Smith, 62, who has had one for three years, delightedly calls it "my key out of jail."

Public acceptance of the predicament is improving. Reader's Digest and McCall's, among other magazines, run ads for incontinence products, though Modern Maturity rejects them as not "upbeat" enough. Television networks have eased restrictions. June Allyson, whose mother has the problem, is currently appearing in TV and print ads for Depend disposable pads and undergarments. Manufacturer Kimberly-Clark estimates that sales of all such products will reach $200 million this year. Procter & Gamble's Attends, once sold only to institutions, went on sale to the public nationwide last year, after consumers urged the company to make its Pampers in an adult size. P & G has a nurse-staffed 800 line that answers 300 to 400 calls a month. One despondent young man called in daily for coaching on how to tell his fiancee about his incontinence. He broke the news to her just before the wedding; they were married as planned. "You know," says the Simon Foundation's Gartley, who suffers from incontinence herself, "negative attitudes are the real disability."

With reporting by Michele Donley/Chicago and Seth Shulman/Boston