Front lines

Some of the bravest battles are fought away from public notice and against enemies the public doesn?t know much about.

For about 20 years now, Elva Suderman, Hillsboro, has been on the front lines of a struggle to understand and cope with an enemy that has robbed her of strength and mobility.

It is in every way her personal war for independence.

They call it ?Post-Polio Syndrome,? a condition that affects survivors of the polio scourge that attacked an estimated 300,000 to 1 million Americans in the late 1940s and 1950s.

An interval of 30 to 40 years usually elapses before the first PPS symptoms occur, but intervals as short as eight years and as long as 71 years have been documented.

For Suderman, the telltale symptoms of fatigue, weakness and pain began appearing around 1980, 32 years after she contracted the disease as an eighth-grader in 1948.

?The symptoms started very slowly,? she says. ?I recall visiting with my dad and I would say, ?I?m so tired and I don?t know why.? I realized it was getting to be a little more difficult to keep my balance and to walk.?

It wasn?t until her brother in Chicago alerted her to a Time magazine article titled ?A New Scare for Polio Victims? that she had any inkling what was happening to her.

?I went to the library, found a copy of the magazine and made a copy of the article. I went to my car and read it and simply sat for five minutes,? she recalls. ?I didn?t need any more diagnosis. It described too much of what I was experiencing.?

Once alerted, she has since spent much of her time trying to learn about, understand and fight the condition.

Unlike PPS, the effects of polio were not slow in coming when it struck in September 1948.

?I had a fever on Saturday and Sunday, nothing alarming,? she recalls with the help of a diary her mother kept during those days. ?And then on Monday, I woke up, got out of bed and fell down. I was paralyzed. I couldn?t walk.?

She spent the next three months in a Wichita hospital, where an entire floor was devoted to polio victims. She went home with two crutches, two braces and a fierce determination to regain as much mobility as she could.

With the rehabilitative help of her parents, particularly her father, she was able to begin high school the following fall without crutches or braces. Her right leg recovered significantly, but her left leg remained paralyzed. She managed to resume an otherwise normal life.

?There was a period of time when (polio survivors) would get better, and then you plateaued,? she says. ?Then there was no more recovery.?

Suderman went on to get business training at Brown Mackie in Salina, then began her career as the secretary-bookkeeper at the Mennonite Brethren Publishing House in Hillsboro.

In addition to her work, she loved to travel, and visited 49 states and several foreign countries.

Like so many other polio survivors, her determination to overcome the effects of the disease carried over into other aspects of her life.

?Polio survivors are known as Type A personalities,? she says. ?Percentage-wise, there are more professionals in the polio population than any other disability. We had to be determined. It was ?Don?t give up, you can do it, push, push, push.? Which we did to the utter limit, to exhaustion.?

Ironically, the determination needed to regain a normal life in the aftermath of polio actually works against those who now face PPS. Instead of trying to do more, persons with PPS need to learn to do less.

?The attitude was, ?Come on, you?ve done it in the past, you can continue doing it,?? she says. ?Your philosophy is ?Use it or lose it.? Ours is, ?Preserve it to reserve it.? The days of pushing are past.?

That lesson was learned slowly and hard to accept. Faced with her physical limitations at work, Suderman retired earlier from her job than she had planned. Had she known earlier what she knows now, she says she would have made the move much sooner.

The trouble was, information about PPS was hard to come by in the 1980s. Many doctors denied its existence?and a few still do. The medical community found out about the condition about the same time as those who were dealing with it.

?What I learned (about PPS), I had to self-teach,? Suderman says. ?Now there are clinics, and many people go there and get upset when doctors tell them they have to start using crutches or a wheelchair (to preserve strength). All of those decisions I had to make on my own.?

An important source of information in the early days was the support groups she attended first in Topeka, then in Wichita. Group members learned from each other when no one else had much information.

?The value of a group is meeting people with similar problems,? she says. ?So many people have negative opinions of support groups, thinking that it?s a whining session. That?s the last thing we do at these sessions. It?s sharing ideas and learning to know each other on an individual basis.?

Suderman?s group in Wichita started in the late 1980s with around 10 people. Today it has 20 to 25 people attending regularly.

With the development of the Internet, Suderman says she now has another great resource for information about PPS. She is aware of literally hundreds of Web sites, but she has found the best information on three list serves. One list has 700 to 800 members.

In part because of her inquisitive nature, Suderman has taken a lead role in PPS awareness. She attended an international convention in St. Louis three years ago and hopes to attend another later this year. Last fall, she was named editor of ?Kansas Connection,? the post-polio newsletter for the state of Kansas that goes to some 340 subscribers.

?The purpose of the newsletter is to inform people that lifestyle changes have to be made, and the sooner the better,? she says. ?If I had known about PPS 10 years earlier, I would have made many lifestyle changes a lot sooner.?

For her, PPS has become somewhat of a cyclical condition?weeks and months of relative good health and strength interrupted by bouts of low energy and increased pain. Eventually, the pain associated with walking prompted her to opt for a scooter and then a wheelchair.

She knows of no pattern to the cycles, but does know now that she can help herself to some degree by avoiding undo stress and physical exertion.

?The main cause of the fatigue is stress?even above physical exertion,? she says.

These days she literally budgets her activities as a way to protect her well-being.

?At the beginning of the week, you get this basket with 12 ?eggs? in it that you can use,? she says. ?If you go shopping and to a ball game, you?ve maybe used two or three of them. And you get no more for the week. If you use them all up ahead of time, then you?ve got to stop, literally.

?I program my schedule now somewhat like that,? she adds. ?You don?t schedule two major events in the same day.?

Suderman says, given others? experience with PPS, she can probably expect to lose 1 to 2 percent of her strength per year. But after a long personal struggle, she?s learning to deal with that probability.

?I?m probably at this time in the most accepting mode that I?ve ever been in my lifetime, due to reading, learning from others, and learning that many others are much worse off than I am,? she says. ?Learning to give in isn?t the right word, but I realize now that it does dominate my day. I?m more accepting of my limitations and not pushing so hard.?

She says friends and family are beginning to understand her situation better, too. Staying connected with them is one of the few goals she has set for herself.

?You really don?t think too far into the future,? she says. ?I?m learning to set short-term goals, not long-term goals. The days of accomplishing great things are past. Now, it?s a matter of coping, and learning to live a simple lifestyle.?

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