SCIENTIST AT WORK: NANCY FRICK; A First-Person Study of Polio’s Painful Legacy

SCIENTIST AT WORK: NANCY FRICK; A First-Person Study of Polio’s Painful Legacy

By HOLCOMB B. NOBLE  Published: November 10, 1998

Dr. Nancy Frick, one of the world’s foremost experts on the long-term psychological effects of childhood polio, says she has a classic Type-A personality: driven to succeed, often to the point of exhaustion, and unduly afraid of failure.

And it is precisely these characteristics that have made her, in a sense, the laboratory for her research into post-polio syndrome — a late effect of poliomyelitis. The public knows little about the centuries-old illness and its painful and fatiguing effects.

Post-polio syndrome remains obscure largely because so many who suffer from it are reluctant to look back at such a dark part of their past, and, unlike Dr. Frick, 55, are unwilling to talk about it.

Dr. Frick, who is the director of Harvest Center, a health and disabilities research group in Hackensack, N.J., was one of 1.63 million Americans struck by polio during the epidemics of the late 1940’s, 50’s and early 60’s. She is also one of the estimated 440,000 who have experienced severe effects of the disease decades after they thought they had conquered it.

The acute form of polio was virtually eradicated in the United States in the 60’s with the development of the Sabin and Salk vaccines, though there are still some new cases in countries where vaccinations are not widespread.

Dr. Frick’s experiences with the harshness of the disease and the brutality of some of the treatments, and her long-term psychological reaction to both, are central to a new understanding of polio and its consequences.

Her most vivid memory of having polio is of being carried off a bus, a very sick 6-year-old, after visiting relatives in Michigan in the summer of 1949. She was placed on the living-room sofa at her family’s farm in Geneva, Ohio, and then could not move.

What followed is a blur, she said. Dr. Frick’s next clear memory is of 13 terrifying months at a medical catchment center, a kind of warehouse of the day for children with infectious poliomyelitis. She recalls:

”A doctor regularly arrived on my ward and moved down the row of beds, stopping at each, and then he would proceed up my side. The minute I saw him I’d start crying hysterically. When he got to me he would literally wind up and punch me hard in the stomach — the pain was unbelievable.

”My mother, who was allowed to visit me once a week, learned that he was testing to see whether any response was returning to my stomach muscles, though gently pushing on them would have accomplished as much. I would wake up in the the night crying with nightmares. Once, because of the crying, a night nurse rolled me, bed and all, into a dark closet and left me there until morning.”

Like most with polio, Nancy Frick eventually recovered, as the effects of the virus, which attacked the motor neurons, the cells in the spine that control movement, wore off. The pain and almost total debilitation were gone, but she lost substantial use of her left arm and right leg and has had to use a wheelchair ever since.

Nancy Frick eventually left the farm and graduated from Baldwin-Wallace College in Berea, Ohio, earning a doctorate in psychology and pursuing a counseling career. She believes the psychological effects of the polio lingered, but physically, she felt fine.

Then in 1982, 33 years after the initial attack, spasms of pain shot through her left leg as she drove to work. The pain, along with increasing fatigue and weakness, grew worse, but her doctors failed to find the cause.

Dr. Frick did not make the connection between the attack and her childhood polio until two years later, when she sought treatment from Dr. Richard L. Bruno, and they began talking about her past. Dr. Bruno was studying the effects of disease on the autonomic nervous system at the College of Physicians and Surgeons, Columbia-Presbyterian Medical Center in New York.

As more and more former polio patients around the world started experiencing the late symptoms in the 80’s, Dr. Frick began a research collaboration with Dr. Bruno, now director of the Post-Polio Institute at Englewood Hospital and Medical Center in New Jersey and chairman of the International Post-Polio Task Force.

An important piece of the puzzle of physiology behind post-polio syndrome was supplied last year in a report by a Canadian scientist. Dr. Alan J. McComas, a neurologist at McMaster University in Hamilton, Ontario, found that polio survivors lost motor neurons in the spine at a higher rate because of early damage caused by the polio virus. To make up for the loss, the remaining healthy neurons send out sprouts to reconnect the muscle fibers orphaned when their motor neurons were killed. Those neurons may have been carrying 500 times their normal workload, causing the muscle weakness and pain.

In understanding the psychological factors, Dr. Frick’s personal experiences proved a valuable starting point.

Dr. Frick organized and directed, with Dr. Bruno’s collaboration, a recently completed study showing that a surprising number of polio survivors had been abused. In a survey of 1,185 polio survivors, 34 percent more of them reported having been physically abused — beaten to motivate them to walk or exercise through excruciating pain — than nondisabled control subjects. Ninety-four percent more reported emotional abuse — having been torn away from families for months or years, ridiculed as ”freaks” or berated by parents screaming that they would never marry as ”cripples.”

Polio survivors also reported having been sexually abused at three times the rate of the general population of people who were children in the 50’s. ”If there was a pedophile in the family or on a hospital staff and a child was unable to run away, you can guess what might happen,” Dr. Frick said.

She had reported, too, with Dr. Bruno, that polio survivors — Franklin D. Roosevelt, Itzhak Perlman, Joni Mitchell, Mia Farrow, Alan Alda and others — were often, like her, hard-driving, Type-A personalities.

Of the 1,049 polio survivors Dr. Frick surveyed, 23 percent more were Type A on average than nondisabled control subjects. And the more driven the survivors were, the more post-polio symptoms they had. And from a third study, the two researchers concluded that these super-achieving survivors tended to be extremely sensitive to criticism and fearful of failure.

Dr. Frick says she believes the compulsion to succeed and the fear of failure are linked to the childhood abuse. Dr. Bruno adds: ”It’s no wonder that so many polio survivors refuse to appear disabled again by using by using crutches, braces or, God forbid, a wheelchair. It appears that polio survivors have been using Type-A behavior as protection against their deep fear of further abuse and criticism.”

But Dr. Bruno says it is essential that post-polio patients slow down and conserve their strength and energy. This is the opposite tack of the rigorous muscle strengthening patients were put through years ago.

Taking Dr. Bruno’s advice, Dr. Frick has been able to control her pain, alternating work and rest and using a motorized wheelchair, though she continues to battle fatigue. She rests in the morning and then, from her home office, she counsels other polio survivors, conducts consciousness-raising seminars, consults with corporations on implementing the Americans With Disabilities Act, and works on her research and writing.

Another respected school of physical therapy has completed a number of preliminary studies suggesting that nonfatiguing, resistance-weight programs can rebuild some of the muscle strength destroyed by polio, and neurobiologists believe they may one day be able to stimulate new neuron growth.

Dr. Frick, however, warns of raising false hopes, because post-polio patients so often continue to deny their condition and push themselves too hard. ”We were considered contaminated after polio, the AIDS kids of our generation,” she said. ”And because no one wants to admit to having had polio, hundreds of thousands of survivors would have nothing to do with each other, so there were no polio-survivor support groups to help recovery.

”Now they often say, ‘Don’t tell me to slow down. I have been very successful being this busy.’ They have no intention of being whacked in the butt twice. But the irony is that for those who do slow down, the pain subsides.”