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Carolyn Baum has made a life's work making life easier for the disabled

This article first appeared in the St. Louis Beacon, July 12, 2010 - Carolyn Baum never set out to become a scientist. Nor did she dream that someday she would be recognized by an academy of science for pioneering new therapies for patients with neurological injuries and diseases.

What Baum had set out to do was help people with disabilities lead normal lives through occupational therapy.

She loved working closely with patients and helping them to overcome both physical and social barriers so they could play an active role in society. Her work was oriented around people, not research.

Baum was a clinician and experienced manager when Washington University recruited her to direct occupational therapy clinical services in 1976. The late Dr. Leonard Berg, a neurologist, took an interest in what Baum was accomplishing with his Alzheimer's patients. He asked her about the science behind her treatments. She was obviously successful, but why? And how could her methods be applied in a scientific manner?

Baum went to the literature and found it all organized around what people could not do. She was a bit shocked.

"In health care we find ourselves trying to fix people's problems. But they're still people, and they still have to live their lives. If we find what their strengths are, we can build on those strengths," she explained.

Together she and Berg decided to find ways to help patients with neurological impairments lead lives as normal as possible, and to find those ways in a systematic manner. In other words, they set out to make occupational therapy a scientific discipline.

The scientific attitude has led to a revolution in treatment. Patients getting rehab in the program she directs at Washington University School of Medicine might have their range of motion measured in 3-D before and after therapy. And the therapy might include playing a video game similar to "Space Invaders" with an adapted Wii. They will also be assessed with a number of tools she and colleagues have developed that build upon what the patient can do so that they can, as she puts it, "live their lives."

Baum, director and professor of occupational therapy and neurology, was recognized for her scientific achievements by the St. Louis Academy of Science in April. Her Scientific Leadership Award was given in recognition of leading Washington U.'s program to the top spot in the nation and her "interdisciplinary approach to neuro-rehabilitation." Baum said she was "thrilled to be recognized as a scientist working on the behavioral level."


Baum is described by all as a "glass half full" person. Because she didn't want to concentrate on patients' losses, she and her colleagues devised the "Activity Card Sort," now used worldwide for diagnosis and treatment planning. Shown above, the patient is given a stack of cards illustrating everyday activities from grocery shopping to swimming to playing with grandchildren. Patients and their caregivers sort the cards into categories: "I didn't do this prior to my injury," "I did it and continue to do it," "I did it less," "I gave it up." The card sort helps individualize treatment.

Patients suffering a "mild" stroke with no apparent effect on movement or speech are usually sent home from the hospital after three days, typically without services. But Tim Wolf, an instructor in occupational therapy and neurology, points out that the patients did indeed have an insult to the brain and disruption in the brain networks.

So Baum and Wolf decided to see if these mild strokes had any lasting effect and whether the patients could use services. They drew upon a computerized registry of more than 10,000 people who had a stroke.

Ninety-eight "mild" stroke patients took a battery of tests after their discharge and six months later. All the patients had been employed prior to their stroke, but only 63 percent returned to work. After six months, about one-sixth of those working had lost their jobs.

The tests showed that many had difficulty in planning or in sequencing steps for a task.

How do these tests show hidden problems? The executive function test, devised by Baum, reveals a lot. This test is now routinely given to patients even if their stroke is mild. In this test a patient must do four tasks:

* Look up and call a phone number

* Cook a pot of oatmeal

* Find their own medicine in a group of pill bottles and show they can follow the instructions on the label.

* Find the bills in a pile of mail and pay them in appropriate order.

During the testing, the patient may be given "cues" to help him or her complete the task. The first cue may be verbal, the second gestural, the next may be some physical help and so on.

Follow-up services can be assigned based upon the amount of cues the patient needs.

When patients who had "mild" strokes take the executive function test, those with cognitive loss can be identified and given services they would not have had under the former standards.

"You find out what you need to help people do," said Baum. "We see what impact the disease has had. And we also see how we can help the families organize daily routines to keep them active. If the activity is meaningful to patients, they continue to do more to help themselves and show fewer disturbing behaviors. These changes result in less stress on their caregivers."

The card sort is used in all sorts of studies under the National Institutes of Health, often to verify outcomes of treatments. Versions of it are adapted to the country in which it is used; Hong Kong's leisure activity pictures may include tai chi, for example. A children's card sort is in use, and a set of cards for adolescents is under development.

It seems so simple, but it is revolutionary because it leads to quantification. One can imagine all sorts of health-care professionals slapping themselves on the forehead and asking, "Now why didn't I think of that?"

Those who have worked with her talk about Baum's creative approach to problem solving. Susan Fitzpatrick, vice president of the James S. McDonnell Foundation, says she is a collaborator by nature. In 1996, Baum began planning the research program for the Cognitive Rehabilitation Research Group, funded by the McDonnell Foundation, to bring the discoveries of neuroscience to rehabilitation for everyday living. She assembled 32 specialists for her group. Normally such a collaboration would begin with a meeting in which each specialist would present a talk on their current research, answer a question or two, and listen to 31 other unrelated presentations.

At Baum's meeting, she began with a video showing brain-injured people trying to make a cup of tea. For some patients, the attempt stretched out for two hours. As each participant watched the struggles, they could begin to see how their specific expertise might be able to help; attention specialists, communication specialists, neuro-scientists could each envision a contribution to solving a very concrete problem.


Baum's drive and creativity manifested early. A teacher recalled that "she was the one always asking questions I couldn't answer." Brought up in a town of 400 in eastern Kansas, restless Carolyn always knew she wanted to go away to college; in high school she had already chosen to become an occupational therapist.

Her parents didn't much believe in college education for women, but they did allow her to enroll as a home economics major at the University of Kansas in Lawrence. "My parents found that an acceptable field of study for a woman."

Then, as she had planned all along, she changed her major.

That self-reliant rural upbringing, with 4-H competitions in pie-baking and dressmaking, gave her life skills much appreciated by her daughter and friends. When her daughter, Chicago attorney Kirstin Sumner, acted in high school musicals, "Mom Baum" made the costumes for Kirstin and her friends. She sewed most of Kirstin's prom dresses.

The Baum apartment was a home away from home for Kirstin's friends during her Washington U. student days. They would come for a fabulous Sunday night dinner and head back to the dorm with a "care package" of leftovers. Then "Mom Baum" would finish editing her book or grading her papers.

Daughter and mother form a mutual admiration society. Baum says raising her daughter as a single divorced mother is her proudest accomplishment. Kirstin says she is "the luckiest person ever" and her Mom is "a true inspiration -- a person of incredible energy who never shies away from new experiences." She recalls that as a teenager in 1982 she accompanied her mother as she led a group of therapists to rural China to talk about occupational therapy. "There was fearless Carolyn running around China just after it began to open to the West," Kirstin said.




China was just the beginning. Baum has traveled the world in her professional capacity and goes to Australia every other year as a visiting scholar at the Stroke Center of Australia.


Everywhere she goes she makes friends as well as professional contacts. In the late 1990s she decided to rent a villa in the tiny Umbrian village of Panicale. Having made friends with many of the people living there, she returns each year and cooks a huge Thanksgiving dinner -- for which she brings the cranberries, sweet potatoes and pecans from St. Louis. One Panicale native attended Kirsten's wedding five years ago. Princess Che Engku Mahirah of Malaysia, whom Baum met on her business travels, vacationed with her in Panicale in 2004.

This ability to relate to people shows up again and again when people speak about Baum.

Linda Cottler, professor of epidemiology at Washington University Medical School, became acquainted with Baum's skills and compassion after Cottler's mentor suffered a stroke. Baum became the mentor's occupational therapist and worked to devise a care plan to help a very creative researcher find her way back. "It was very touching to see her compassion and her dedication to someone in the WU community," Cottler said. "She often checked on her to make sure things were going OK."

Tim Wolf, who earned his doctorate in occupational therapy with Baum and then joined the faculty, speaks of her mentoring style. "She is good at understanding each person's strengths and weaknesses. She learns where you want to go and helps you get there. She helps you find the resources you need -- perhaps money for a course, salary support to lessen a teaching load, or help in building a relationship with a person in another department."



A patient with a neurological injury needs lots of learning to perform once-routine activities like putting a can on a shelf. Conventional therapy has the patient do the motion 40 times in an hour. But lab research on animals has shown that 300 reps an hour is needed -- a lot of cans to stack. 

Enter the video game. Jack Engsberg of OT is collaborating with Caitlin Kelleher in computer engineering to devise games that people can play at home to practice the motion they need.

Suppose a patient needs to improve wrist mobility. A Wii controller attached to the wrist could steer a helicopter over buildings of different height. After a time, the helicopter might need to refuel mid-air. One patient who hadn't used her arm for 17 years played such a game an hour a day for six weeks (about 1,000 reps/day) can now raise her arm and even catch a falling object.

The games are individualized and updated to maintain interest. Now computer scientists are creating a language for therapists, so they can write their own games based upon what interests the patient.

Baum credits her own mentors, among them Berg and Wayne Conry at Kansas University, where she worked before coming to Washington U. Berg put her in touch with a new psychology Ph.D., Dorothy Edwards. They collaborated for many years to devise new measurements and treatment tools.

Eventually the time came when she wanted to follow her own interests. Edwards suggested she get a Ph.D. "And so," says Baum, "I did." In 1993 she obtained a Ph.D. in social work at age 50.


The School of Occupational Therapy now has 11 research labs and is submitting a plan to give its own Ph.D. degree. Each laboratory lists collaborators in at least five other departments.

The labs use cutting edge technology, from GPS (Global Positioning System) to MRI (Magnetic Resonance Imaging). As faculty member Jack Engsberg puts it, "My human performance laboratory is probably the only one in an occupational therapy school in the world." Since Engsberg is a biomechanist with an engineering degree focused on mechanical engineering, it is easy to see why only someone with scientific vision would put him on the faculty of an institution dedicated to helping people do their everyday tasks.

Baum is proud that in her second term as president of the American Occupational Therapy Association from 2004-7, she and a group of like-minded colleagues made sure that theirs is a professional society rather than a trade association. Science will be a bedrock value as they enter the second century of their profession.

She has authored hundreds of papers, has been influential in national policy-making, and her list of honors stretches well past a page. But she sums it up by saying she hopes to be remembered as "one who made a difference in the lives of people with disabilities."

Jo Seltzer is a freelance writer with more than 30 years on the research faculty at the Washington University School of Medicine and seven years teaching tech writing at WU's engineering school. 

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