Post-Polio Syndrome Victims Share the Pain

Roberta Rak had all but forgotten about polio after doctors removed her leg brace in 1962.

“I was too busy making up for lost time, doing all the things normal kids do,” said the Simi Valley woman, who contracted the virus when she was 6 months old.

“But, now that I’m 37, I have pain and fatigue to remind me. I’m back to a leg brace again. And I use crutches,” said Rak.

The return of pain, fatigue and weakness 30 to 40 years after an acute attack has been dubbed post-polio syndrome. Experts estimate that one-fourth of the 300,000 polio survivors in the United States are experiencing the syndrome.

Each month, 35 of them gather at Northridge Hospital for meetings of the Post-Polio Syndrome Support Group. There, they listen, advise and encourage each other as well as share information.

“Losing your independence is the hardest thing,” said Rak, who is secretary of the organization, which is one of 150 such groups in the country. She is also involved in the Polio Survivors’ Foundation, established nine years ago.

“We realized we needed something like this support group when the syndrome was still new to the medical community,” explained Lee Seitz, a Reseda resident who was hospitalized with the disease in 1951. Seitz organized the support group two years ago and sits on the boards of both the foundation and the Polio Survivor’s Assn., which lobbies on behalf of severely disabled post-polio patients.

Helping Themselves

“The doctors we saw had no experience with the condition so they referred us to psychiatrists,” Seitz said. “We knew our pain and weakness were real, even if they didn’t. So we got together to help ourselves.”

Even experts such as Dr. Jacquelin Perry, chief of the polio clinic at Rancho Los Amigos in Downey, who has been seeing polio patients continuously since the epidemic years, say the syndrome took the medical profession by surprise. Later effects of polio were not seen until about 1980. The condition didn’t have a name until 1983.

“We didn’t anticipate anything like this,” said Perry, who treats many members of the support group.

Rak was advised by Perry to stop pushing herself and start modifying her life style. She quit her job as a quality-control inspector for an aircraft parts manufacturer.

Some Forced to Quit Jobs

“I was trying to be a Superwoman and work, despite pain and terrible fatigue,” Rak said at a recent meeting at Northridge Hospital. “A year ago I got tired of fighting and quit the job I loved. I feel better now and try to remember Dr. Perry’s advice of resting an hour after each two hours of activity.”

“I quit my job 2 1/2 years ago, too,” added Patty Fitzwater of Van Nuys. “I’m back in a wheelchair after 30 years of being out.”

Fitzwater contracted polio in 1956, when she was 7 1/2 months pregnant. “I delivered my son in an iron lung, then rehabilitated myself in therapy so I could go to work and support my three children,” she said. “My husband left . . . said he didn’t marry a handicapped person. Now I worry about the future.”

Charles Henderson, whose polio occurred at 9 months of age but wasn’t diagnosed until he was 9 years old, shared his feelings about forced early retirement with the group.

“After almost 45 years without crutches, the syndrome started and I needed them again. My good leg started failing and I became so unsteady on my feet my boss at Bendix was afraid of an accident,” he said. “Lucky I had a small pension coming.”

“The psychological effect of becoming disabled for the second time is the biggest problem,” said Ed Smith of Burbank, who had polio in 1945.

Recurred 30 Years Later

“I gave up my cane after a year of physical therapy and worked at Lockheed as a purchasing agent for 30 years before I started going downhill. When my right hand got so weak I couldn’t process papers anymore, I retired on disability. Now I’m back to the cane and worry about what will come next.”

Margie Diegery of Valencia talked about changes she is experiencing. “I was 15, a drum majorette and cheerleader when polio hit me,” she said. “I went to Warm Springs, Ga. for a year of rehabilitation, then came back to our home in Kansas City to finish high school and attend college.

“After a divorce in 1968, I studied for a teaching degree in special education so I could support my two children. I am still employed at College of the Canyons, but I’ve deteriorated so badly I’m back in a wheelchair. I have trouble transferring from the car to the chair.”

Granada Hills resident Ed Ruckmar, who had polio in 1951 and is vice president of California Assn. of the Physically Handicapped, listened to Diegery’s problem and advised her to use a transfer board.

“I started using one nine months ago, and it really helps,” he said.

Unenlightened Public

No meeting is complete without the sharing of at least one experience regarding handicapped parking or building access. Joanne Gorter of Van Nuys, who had polio in 1953 when she was 6 and is on disability from her work as a graphic artist because of pain and weakness on the left side of her body, described a recent shopping trip to Fedco.

Wearing the immobile arm support prescribed after shoulder fusion surgery, Gorter was refused entry through the disabled person’s door. The guard said, “You don’t look disabled to me.”

Gorter said she went to the manager and complained. “I asked him why he thought I had the handicapped person’s placard for my windshield? He apologized.” After listening, members agreed that they must continue complaining in order to educate a public that still only acknowledges people in wheelchairs as disabled.

Dr. Elliott Phillips, medical director of the Sleep Disorders Center at Holy Cross Hospital in Mission Hills, talked to the group about sleeping problems.

Suffer From Apnea

“The reason some of you grow sleepy during the day is because you have apnea at night,” he said. Apnea is the periodic, brief cessation of breathing during sleep which deprives the body of oxygen.

“Post-polio patients who have weakened chest muscles are more vulnerable to apnea as muscle tone relaxes during sleep,” he explained.

Individuals who want to know if, or how severely, they have the problem, were invited to volunteer for an upcoming research project on post-polio syndrome. People who signed up will spend one night sleeping in the hospital while hooked up to machines that record vital signs on a polysomnograph.

In the nine months Ed Smith has been attending, he said, the support group “has made the difference between life and death to me. I’m not as lonely and depressed. I don’t think about suicide now.”

New polio cases are rare in the United States since availability of the Salk vaccine in 1955 and the Sabin in 1961. The older cases are the ones that need attention now.

“Everything seemed to fold after the vaccines came out,” said Rak. “We needed to know how to maintain what we gained back, but nobody was around to study the problem.”

“We pre-vaccine victims are the leftovers,” said Henderson. “We’re the only ones who know how much we need help, so we’re the ones who will have to push for more research.”