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SURVIVING STROKE

Ellen Pieper had been in the hospital 10 weeks when she felt an intense need to ask her husband a question. So, she called him at home one night.

“Greg?” she asked. “Why am I here?”

“Ellen,” her husband replied. “You know you had
a stroke, right?”

She didn’t believe him. So, Ellen called her mom, and then a close friend, and then she asked the night nurse. They all told her the same thing. After hearing it so many times from so many people who cared so much about her, Ellen, a 33-year-old mother of two young boys, finally understood the truth: She had suffered a stroke.

Russ Pixler was inside a dome when something horrible happened inside his head. He was a ninth grade science teacher at Ames High School, and on the morning of Sept. 4, 2002, he was creating a diagram of the night sky in a schoolroom planetarium. He squatted inside the dome, then got out, stood up, lost his balance, and almost knocked down the whole structure.

Soon, students arrived in the classroom, one with a pass that needed Mr. Pixler’s signature. He couldn’t sign it. He couldn’t remember how to write his own name.

Russ was having a massive stroke. By 5 p.m., the 38-year-old father of two was unconscious and not expected to survive.

Stroke is easy to stereotype. It happens to old people. It causes paralysis on one side, and slurred speech. Remember Kirk Douglas at the Academy Awards a few years ago? Stroke looks like that. In truth, stroke does not age discriminate. Of the approximately 700,000 people in the United States who suffer strokes each year, 30 percent are under the age of 65 and 20 percent are under the age of 40. Stroke is the third leading cause of death and the leading cause of disability in the United States. Stroke does its damage in two primary ways: hemorrhagic, which is sudden bleeding into or around the brain, and the more common, ischemic, which is a loss of blood flow to tissue, caused by an obstruction of the blood vessel, usually in the form of plaque or a blood clot.

Stroke affects each victim differently, but young stroke survivors have some advantages when it comes to survival and rehabilitation, explained Dr. Curtis Hansen, a stroke specialist in Des Moines. A younger brain has more plasticity and can recover all types of functions much better than an older brain, Hansen said. Young stroke survivors also often have careers and young children motivating them to get better.

“I knew our life as we knew it was over,” said Wendy Pixler of her husband’s stroke. “But, we didn’t grieve. We had to go on, and a lot of it was because of
the kids.”

“If a parent rolls over and dies when life kicks you in the teeth, what does that tell your kids? They provided me a reason to live,” said Ellen (’88 English, ’99 M.A. journalism and mass communication).

Ellen’s boys were asleep when their mom collapsed on the night of Jan. 30, 2000. She had woken up that morning with the worst migraine of her life and had struggled to get through the day.

“It was Super Bowl Sunday, a day that gives a lot of women a headache,” she said, displaying her rich sense of humor.

After sons Grant, then 4, and Calvin, then 1, were in bed, Ellen and her husband watched the big game. But the pain in her head became unbearable and Ellen asked Greg to help her to the bathroom. Within a few minutes, she was on the floor, barely able to move or talk.

“Call 911,” she moaned.

A hemorrhagic stroke rendered Ellen mute and paralyzed on the left side. She was in intensive care at Iowa Methodist Hospital in Des Moines for three weeks. She had brain surgery three times for hydrocephalus, or fluid on the brain. She then spent eight weeks in rehabilitation relearning to stand, sit, walk, and talk.

Stroke wasn’t her only challenge. A doctor who had long treated Ellen for a thyroid condition regularly stopped by to check on her progress. He’d give her arm a squeeze whenever he said goodbye. On one visit, he noticed Ellen’s arm was unusually warm. An IV line had become infected, and Ellen was perilously close to dying of blood poisoning. Decimated veins had to be removed from her right arm.

Greg (’99 statistics) and others reminded Ellen again and again why she was in the hospital, but she couldn’t retain the startling information. Who were all these people in the white coats and why did they keep asking if she knew her name or the date? Where did these scars on her arm come from? Ellen couldn’t remember. On April 13, she called all those people and finally understood.

“I was shocked when I heard it for the first time. Old men had strokes. Fat smokers had strokes,” she said. “I’m still comprehending it, still coming to terms with what happened to me.”

On April 18, Ellen entered On With Life, a post-acute-brain-injury rehab facility in Ankeny, where she spent another seven weeks in physical, occupational, and recreational therapy. On June 2, four months after her stroke, Ellen returned home and began the process of “getting better for the rest of my life.”
“Becoming a stroke survivor has had as significant an impact on my life as being a mother,” she said. “My priorities were reorganized. I see things differently. Everything is different.”

Ellen is a very public stroke survivor. She tells her story to various groups to raise awareness of stroke. In 2001, with the help of the American Heart Association, she founded Different Strokes, a support group for young survivors of stroke and traumatic
brain injury.

“There are 10 of us. We get together once a month and feel totally normal for an hour and a half,” she said. “Nobody minds being asked, ‘What’s your name again?’ or hearing ‘Don’t you hate when… ?’”

Ellen’s long-term memory is intact, but the short term is weak. Her reaction time is slower. She knows she’s coming down with something when her left side goes to sleep. She’s less organized, and sometimes overlooks the obvious, like messages conveyed through facial expressions. She doesn’t read between the lines like she used to.

It is not unusual for her to walk into colleagues’ offices and talk for a few minutes before realizing they are on the phone.

“My social skills got zapped,” she explains. “I have to learn to listen more and talk less. That’s something every little child has to learn but I have to relearn.”

“Relearn” has also been an important concept in Russ’ recovery.

His stroke resulted from an unusual set of circumstances, all centered around the heart.

“When dealing with stroke in a young person, we always think about the heart first,” said Dr. Hansen.

“The heart is the primary source for blood clot traveling up to the brain.”

Two months prior to his stroke, Russ (’87 earth science, M.S. ’99 education) had knee surgery for an old basketball injury. He didn’t know it, but he had a blood disorder that causes clots. He later discovered that members of his family and his two children shared the condition. Russ also didn’t know that he had a small hole in his heart.

A blood clot that resulted from the surgery traveled to Russ’ heart. Normally, the flow of blood would have taken the clot to the lung, where it likely would have broken up. Instead, it slipped through the hole and went straight to Russ’ brain.

“He never should have lived through it,” said Wendy. “He was totally paralyzed, totally out. It’s a real miracle he survived. But, I prayed that God would preserve him so he could raise his kids.”

Doctors told Wendy that if her husband did survive, he would likely be in the hospital for several months and might never be able to walk again. Russ defied all expectations and was slowly making his way up and down the hospital halls within a week.

“He stunned the doctors,” said Wendy.

“It wasn’t my time,” explains Russ.

When he returned home, the teacher had to be re-taught.

“He couldn’t talk. Couldn’t remember what anything was,” said Wendy. “He had to relearn to dress himself, to brush his teeth, everything.”

Wendy (’84, ’87 education), who does home schooling through the Ames School District, labeled household items – chairs, tables, appliances, you name it – so Russ could relearn what they were. She used flashcards to help Russ relearn numbers. She and Russ laugh as they remember how son Jonathan, who was 4 at the time, shouted out the numbers. Wendy had to tell the eager boy to be quiet and let Daddy get the answer.

Jonathan was scared of his father when he came home, concerned that he, too, would have a stroke. A little education about stroke and some quality playtime with Dad eventually eased the boy’s fears. Daughter Kirsten was 2 at the time and just starting to talk. When her father came home unable to speak, Kirsten, out of shock or solidarity, stopped talking, too.

Russ is now able to speak, but he has aphasia, a condition that inhibits the ability to communicate because of damage to the speech centers of the brain. Wendy was determined to find the best care for Russ, and her research led the Pixlers to the Residential Aphasia Program at the University of Michigan, Ann Arbor. From September to December 2002, the Pixlers lived in Ann Arbor while Russ went to therapy.

“We had a series of adventures living in a motel in Michigan in the winter with two children, one in diapers,” said Wendy.

Russ was a driven man in Michigan. He spent all day relearning once-routine activities and working on his speech. His therapy was built around what he knew best – teaching science.

“He taught his therapists earth science,” said Wendy. “He needed to teach because he was a teacher.”

The Pixlers credit their deep Christian faith for their ability to handle the impact of the stroke on their family.

“You just have to do the next thing when a crisis hits you,” said Wendy. “You just have to do the next thing and the next thing and the next thing.”

Faith has also played a role in Ellen’s recovery. After the stroke, she was baptized and became an active member of the United Methodist Church. Now, despite all the pain and lost time, Ellen calls her stroke “a gift.”

“It was such a direct wake-up call … an opportunity to readjust, to focus, to take time out,” she said. “It was a boot to the head direct from God. It was a message telling me to slow down, look around, shape up.”

Ellen has to remind herself to do things every minute of the day. She has various tricks that help her to remember where she parked the car or that she has food on the stove. Grant knows that when Mom says she’s having a flood, it means she’s tired and may get emotional.

Grant remembers being afraid that his mom might never come home. He also remembers his excitement when she finally did because it meant “she had a higher percentage of living.” Calvin has vague memories of his second birthday party in the therapy room at Iowa Methodist. Pictures from the party show Ellen in a wheelchair, her head shaved.

“My deepest regret is not being there when they needed me the most,” said Ellen. “I don’t know how they got through the early times.”

Stroke, Dr. Hansen said, never affects just the patient, but the whole family. Ellen admits that her boys are more obsessive than other kids about wearing bike helmets because they know so much about head injuries. The stroke also affected the Pieper marriage.

“Adversity can shatter a relationship, but it really strengthened us. We have better balance in the marriage; we work together on things more,” said Ellen. “Greg took that line ‘sickness and health’ to heart big time.”

Because of her stroke, Ellen was unable to continue in her position as employee communications manager at Pioneer Hi-Bred International, Inc., one of the world’s largest seed companies. But, she still works at Pioneer in Des Moines, and she recently received a “big vote of confidence” when she was given responsibility for on-line employee communications.

Russ, meanwhile, isn’t sure if he will ever be a classroom teacher again. He did some science teaching with Wendy, but he admits with slight embarrassment, “It took me a week to prepare the lesson.” Still, he’s optimistic about his future and considering a career in computer consulting, with emphasis on helping people with disabilities.

Neither Ellen nor Russ have any paralysis. During conversation they may need to pause to remember a word or phrase, but both speak clearly. Ellen and
Russ really don’t look like stroke survivors. But they are. Their lives have been permanently changed by a disease that isn’t supposed to strike young moms and dads. But it does.

About the Writer | Steve Sullivan is an Ames-based writer.