Network Offers Support, Help to Post-Polio Victims

Betty Sadiasa could keep her anguished secret no longer.

“I finally had to tell my husband and two children that things are changing drastically for me,” said the 40-year-old victim of post-polio syndrome.

“I now have to re-categorize myself as disabled. I can’t even move my bad arm and leg anymore. I have increasing difficulty breathing, and the pain from all this is taking away my stamina,” she said. “I told my family that, when I lie down now, it’s not because I’m lazy. I prepared them for the fact that there’s just going to be a lot of things I’m not able to do anymore.”

It was a devastating revelation for Sadiasa. She has lived a full, active life.

She worked for Pacific Bell 16 years, was a den mother, a Little League executive and a volunteer at Children’s Hospital. There was hardly a hint of the polio that immobilized most of her body two days before her fifth birthday and forced her into an iron lung.

A year later, after a series of operations and extensive physical therapy, she regained use of her limbs and was off and running. Until now.

Along with 350 other local childhood victims of polio who are experiencing similar problems, she takes refuge in the Post-Polio Network of San Diego, created a year ago to offer emotional support and provide medical information.

“The question we’re all asking is, ‘What’s going on here and what happens next?’ ” Sadiasa said. “What kind of a future do we have?”

Asta Carwin, manager of a San Diego company that provides respiratory equipment, kept hearing the same questions from her customers.

“I kept getting calls from people who had polio in their youth and were now having new difficulties,” Carwin said. “They called me because I work a lot with polio victims. But I didn’t have any substantial information on what they were experiencing.”

The increasing flow of inquiries made her realize the need for an organization that could address these issues. Compounding the problem was a general lack of information from doctors. Their medical training didn’t focus much on polio, since the Salk and Sabin vaccines virtually stamped out the virus by the early 1960s.

So Carwin turned to her friend, Norma Jean Hull, 57, who was paralyzed from the neck down from polio as a child and knew first-hand what post-polio syndrome could do.

Doing the Legwork

“We got together and talked about starting a group,” Hull said. “Asta got all the details together and did the legwork. We figured to get 50 people at the first public meeting.”

That Sharp Memorial Hospital event drew 200 participants.

Despite being continually on a respirator and having no use of arms or legs, Hull wrote the group’s first newsletter and still contributes poetry. She formerly designed Christmas cards and painted, using a brush in her mouth. But her worsening condition no longer allows those activities.

“Our main goal is to offer emotional help and solid medical information to victims,” Hull said. “When we are faced with having these childhood polio symptoms all over again, I think it’s worse than the first time. It’s a second death. And it’s important to know you’re not the only one with this and you can share and discuss it.”

The group meets quarterly at Sharp Hospital. Meetings are highlighted by lectures from doctors and polio experts discussing the latest findings on post-polio syndrome. In addition, small support subgroups gather monthly at members’ homes to share common problems and collectively think of ways to overcome them.

“One of the best things we do is raise each other’s spirits,” Hull said. “Members share phone numbers and know they can call each other any time there is a need. Believe me, this situation we’re in can really put you on an emotional roller coaster. It helps so much to be able to talk to someone else who is going through the same thing.”

Post-Polio Clinic

Another goal the group recently achieved was the creation of a post-polio clinic at Sharp Hospital. It is one of only two in Southern California. The other is at the Rancho Los Amigos Rehabilitation Center in Downey.

Through the clinic, which is open each Wednesday morning, patients receive needed medical evaluation and assistance on utilizing proper braces. Gait analysis is done at the Children’s Hospital Motion Analysis Laboratory. The clinic also designs individual physical therapy programs for participants.

That instruction is crucial since regular exercise actually worsens a post-polio victim’s condition.

“Many of these people, in their zeal to gain strength and achieve a normal life, have inadvertently made things worse,” said Dr. James Marino, 33, medical director of the clinic. “Standard exercises where you use muscles to their maximum capacity are a real detriment.”

Marino shares a special bond with his patients. Ten days after he was vaccinated with Salk vaccine at the age of 2, he contracted polio, leaving him with a weak left leg and a limp.

He said few doctors know what post-polio syndrome is all about and he endorses the group’s efforts to educate local physicians through mass mailings.

“The condition comes on 20 to 30 years after initial onset of the disease,” Marino said. “It’s not a reactivation of the polio virus, which many of these people fear. Instead, it’s a result of the cumulative strain over the years which has finally used up tissue reserves in a victim’s ligaments, joints and muscles.”

Loss of Mobility

The result is a marked increase in pain and fatigue along with a loss of mobility. In some cases, childhood breathing problems reappear and become progressively worse.

What has victims most perplexed is the sudden appearance of symptoms in their good arms and legs.

“Unfortunately, we’ve found that almost all those with polio had neurologic involvement even in their normal extremities. Because of aging, results are now becoming noticeable,” Marino said.

He said the post-polio network performs an essential function in helping victims cope, especially since the long-term outlook is so grim.

“Prospects for these individuals don’t look good at all,” he acknowledged. “Evidence shows a slow, continual erosion of muscle strength with no leveling out and no effective treatment to reverse the process.”

Future researchers may be able to devise artificial nerves or figure out a way to restimulate nerve growth. “But that’s a long way down the road,” Marino said.

Despite the odds, the group is determined to remain positive.

Its first guest lecturer, Dr. Fred Baugham, 54, a neurologist in East County, is a case in point.

He became a polio victim at 16, with both legs paralyzed and an arm mildly affected. Despite his disability, he plays doubles in tennis with the aid of either a cane or crutches, and proudly boasts of being “a low B or high C player.”

But he cautions the group to never overexert their muscles and to keep weight down, a nagging problem especially among the wheelchair-bound. He advises victims to analyze how much the initial disease affected specific muscles and then carefully compensate.

“During the past several years, I’ve noticed myself having more difficulty with climbing stairs than I used to, and my wife tells me I’m using the cane more at home,” he said. “But I’m better off than I thought I’d be at this stage.”

The group has attracted a wide range of ages.

On the young side is Sara Handelman, 33, who came down with a moderate case of polio just months before the Salk vaccine was distributed in Mexico, where she lived until five years ago.

So far her only noticeable post-polio symptom is occasional severe pain in her lower back.

“It’s very scary because it can be so intense,” she said.

One of the older members of the group, Thelma Silberzweig, 70, is also confident, despite increasingly severe symptoms from post-polio syndrome that began 20 years ago. That was when her right arm weakened and made her unable to type or write. She had to give up a secretarial service she created and had run for 18 years.

She subsequently performed volunteer work for the local Jewish Family Service but since the summer has been confined to a wheelchair. Her arm and leg muscles continue to deteriorate.

“All of us in the group have tremendous frustrations,” Silberzweig said. “But life is still beautiful and we reinforce that in each other. Those of us in wheelchairs tell the others who may be in one soon that you can still carry on. With difficulty, yes, but it’s not the end of the world.”

Bob Miller, 40, a childhood polio victim and former travel agent, acknowledged that during much of his adult life “I lived in the fast lane, traveled everywhere, abused my body, and didn’t really give it a thought.”

Five years ago, he didn’t need leg braces or a cane. Now, the member of the group’s board of directors gets around in a wheelchair.

He said the organization can do a big service by spreading the word about what the cumulative effect of such a life style is for those who had childhood polio.

“Hey, I wish I knew enough to be a little more moderate when I was younger,” said the ex-cigarette smoker who had once ballooned to more than 200 pounds. “You really pay for it down the line. It’s a real crushing blow when it catches up to you.

“This group is committed to making people aware of what’s occurring. We’re not a bunch of hypochondriacs or lazy people like some of our families and friends think. The late manifestation of this disease is real.

“I can’t tell you how important it is for us who are suffering from post-polio syndrome to get together and share our experiences. It makes us all a little bit stronger and able to cope.”