By Steven Barcus
(November 2016) Sarah Cauley cancelled her first dance lesson.
dream of dancing and even performing on television’s “Dancing with the
Stars” just seemed unattainable. She feared no one would want to waltz
with her if she was unable to open her hand enough for someone to hold
“The words ‘graceful’ and ‘cerebral palsy’ are not words
typically used in the same sentence,” says Sarah, who has spastic
Watching Sarah today, her gracefulness shines on
the dance floor and she also is helping researchers at the University of
Colorado Anschutz Medical Campus explore how cerebral palsy impacts
health and mobility in adults.
Learning from Sarah
Carollo, PhD, PE, director of the Center for Gait and Movement Analysis
(CGMA), says researchers can learn from Sarah’s active lifestyle, which
is why he invited her to participate in the Cerebral Palsy Adult
Transition (CPAT) study. CGMA was developed in 1999 as a collaborative
effort between Children’s Hospital Colorado and the University of
Colorado School of Medicine’s Departments of Physical Medicine &
Rehabilitation and Orthopedics.
“Some people with cerebral palsy
assume that their disease will force them to stop walking at some point
in their lives,” says Carollo, an associate professor in the School of
Medicine’s Departments of Physical Medicine and Rehabilitation and
Orthopedics and the University of Colorado Denver | Anschutz Medical
Campus’s Department of Bioengineering. “They often think it is a
natural consequence of the disorder,” Carollo says. “However there’s no
evidence to suggest that.”
Carollo theorizes that maintaining an
active lifestyle can help maintain gait and walking ability—ultimately
allowing individuals to stave off secondary conditions that accompany a
The many hours Sarah spends practicing and
performing her dance routines could also be helping her to maintain her
James Carollo, PhD, chats with Sarah Cauley about the
Sarah was eager to participate in the CPAT study because she knew there is little research on adults with cerebral palsy.
was excited to learn they were doing research to help people over 18
with cerebral palsy,” says Sarah. “There aren’t a lot of resources for
that, and the condition doesn’t go away just because you’ve turned 18.”
CPAT study is designed to understand how the walking abilities of
people with cerebral palsy change during the transition from childhood
to adulthood. Carollo, with coinvestigators Patricia Heyn, PhD, FACRM,
and Amy Bodkin, PT, PhD, PCS, both associate professors of physical
medicine and rehabilitation, are analyzing more than 70 former CGMA
patients to see how their gait and other variables compare to data
collected when they were children.
“Patients with CP tend to get
lost between 18 to 21 years old,” says Bodkin. “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
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,” says Carollo. “The
passport is valuable to them since it provides information on how they
might maintain or improve movement and overall health status going
Carollo and the CPAT research team just completed the
data collection phase of the study in August. 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.
Sarah Cauley is tracked by sensors in the Gait Lab.
a person who values measurement, I feel very privileged to test our
previous patients not as an evaluation of the past, but as a roadmap for
the future,” says Carollo.
Following a dream
initially inspired to follow her dream of learning to dance after seeing
a news report about a blind person who learned ballroom dancing. She
knew her challenges were different. She called Colorado Dancesport, a
dance studio, and explained her situation. She scheduled a lesson that
she ultimately cancelled.
Six months later, on the eve of her 29th birthday, Sarah rescheduled. This time, she kept the appointment.
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
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
“I dance because I love it,” says Sarah. “I hope when I dance people see that.”