Even though learning to waltz had been a lifelong dream for Sarah Cauley, she cancelled just one day before her first lesson. She was unable to open her hand enough for someone to hold it, and was afraid no one would want to try.
Steven Barcus, University of Colorado, Anshutz Medical Campus May 17, 2016
“The words ‘graceful’ and ‘cerebral palsy’ are two words that are not typically used in the same sentence,” explained Sarah, an individual with spastic cerebral palsy.
Watch Sarah dance today and you would describe her as graceful. Not only has Sarah become a competitive ballroom dancer, she is helping CU Anschutz researchers explore how cerebral palsy impacts health and mobility in adults.
Following a dream
Sarah was first inspired to follow her dream after seeing a news report about a blind individual who was able to learn ballroom dancing. She knew the challenges were different from her own, but thought there might be a way for her to learn. She called the dance studio, Colorado Dancesport, and explained her situation. They told her to come in for a lesson—the lesson that she ultimately cancelled.
Things were different six months later when she rescheduled for the eve of her 29th birthday. Despite still being nervous, she was resolved to pursue her dream.
“I stood across from my instructor, held out my hand, and I said, ‘Hello my name is Sarah, I’m 29 years old, and I would like to learn how to waltz.’”
Even though learning to dance proved more difficult than she first thought, Sarah eventually had the dance down. Five months later she and her instructor were performing a tango routine in front of a live audience. After that she entered her first ballroom dance competition.
“I dance because I love it,” said Sarah. “I hope when I dance people see that.”
People do see it. They see it when Sarah talks about dancing. They see it when she steps onto the dance floor. They see a lot that can be learned from Sarah’s determination, perseverance and courage.
Learning from Sarah
Jim Carollo, director of the Center for Gait and Movement Analysis (CGMA) at Children’s Hospital Colorado, and associate professor in the Departments of Physical Medicine & Rehabilitation (PM&R), Orthopedics, and Bioengineering, also thinks much can be learned from Sarah’s active lifestyle. That is why he invited her to participate in the Cerebral Palsy Adult Transition (CPAT) study.
The CPAT study is designed to understand how the walking abilities of individuals with cerebral palsy change during the transition from childhood to adulthood. Carollo, along with coinvestigators Patricia Heyn, Amy Bodkin and faculty members from the PM&R Department, are analyzing 70 former CGMA patients to see how their gait and other variables compare to data collected when they were children.
“Some people with cerebral palsy assume that they will have to stop walking at some point,” Carollo said. “They often think it is a natural consequence of the disorder. However there’s no evidence to suggest that. What is important, is to identify and remove biomechanical obstructions to independent ambulation, and thereby avoid falling into a sedentary lifestyle, because there is evidence that that can lead to secondary health conditions, especially in patients with a pediatric condition.”
Carollo theorizes that maintaining an active lifestyle can help to maintain gait and walking ability—ultimately allowing individuals to stave off secondary conditions that accompany a sedentary lifestyle.
The hours Sarah spends practicing and performing her dance routines could also be helping her to maintain overall health. Sarah was eager to participate in the study since she knew there is little research on adults with cerebral palsy.
“I was excited to learn they were doing research to help people over 18 with cerebral palsy,” Sarah said. “There aren’t a lot of resources for that, and the condition doesn’t go away just because you’ve turned 18.”
This is a significant problem, according to Bodkin, who noted that the CPAT study is hoping to begin bridging the gap between patients lost during the transition from pediatric care to adult care.
“CP patients tend to get lost between 18-21 years old,” Bodkin said. “This happens to many adults with pediatric conditions. It is a combination of a lack of specialists and lack of insurance, as well as limited access to the healthcare system.”
Passport to health
Seeking to provide an additional resource for CPAT study participants, Carollo, Heyn and Bodkin have created an individualized “health passport” for every participant. The health passport incorporates data collected from the gait analysis as well as lipid and insulin panels, quality of life assessments and other tests to give guidance on how they can live a healthy lifestyle. The passport is presented at a conference with the participant and their family.
“The health passport has been a strong motivator for patients to participate,” Carollo said. “The passport is valuable to them since it provides input on how they might maintain or improve movement going forward.”
Carollo and the CPAT research team plan to conclude the data collection phase of the study by the end of summer 2016. They hope that once analyzed, the data will shed light on adults with cerebral palsy and offer new ideas on how to improve overall health and avoid secondary conditions often reported in this vulnerable population.
“As a person who values measurement, I value being able to test previous patients not as an evaluation of the past, but as a roadmap for the future,” Carollo said.