Cerebral palsy patient powers through obstacles
In recognition of occupational therapy month, we take a look at the adaptive equipment department at Riley, which works to keep patients as independent as possible.
Like any recent college graduate, Kristin Wheeler is eager to find a job, to start her career.
The Brazil, Indiana woman, who turns 28 next week, has associate degrees in human services and early childhood education. She wants to work with young people as a counselor, helping them find their passion and showing them how to plow through obstacles that might be in the way of their dreams.
Wheeler knows about obstacles. She has cerebral palsy, identified as a group of movement disorders that appear in early childhood. Symptoms include poor coordination, stiff muscles and tremors. There may be problems with sensation, vision, hearing, swallowing and speaking.
Since the age of 3, she’s been coming to Riley Hospital for Children at IU Health for treatment, including physical therapy to help slow the progression of the disease.
She has since aged out of the therapy program at Riley, but Wheeler still returns to the hospital’s rehab services unit at least once a year for an evaluation of her adaptive equipment needs. In this visit, she and her mom, Cortney Cooksey, are talking with Tiffany Stead about issues Wheeler has encountered when driving her power wheelchair.
Stead, an occupational therapist who heads up the adaptive equipment department on the first floor of the Riley Outpatient Center, can tell right away that Wheeler’s right arm – her driving arm – has limited mobility and can’t easily reach the joy stick that steers the power chair.
Usually Wheeler’s mom tries to guide the chair from behind but often ends up getting her toes run over. It’s the kind of thing mother and daughter have learned to cope with. They make do. Sometimes, to get into places that can’t accommodate the power chair, Cooksey holds her 85-pound daughter from behind and helps her walk.
“We’ve got a system, don’t we,” Wheeler says to her mom, who responds, “Yep, our bodies move together.”
The two have been a team for nearly three decades now. They joke that they’ll grow old and gray together.
But first, Wheeler wants to feel confident driving her chair independently into job interviews. It’s holding her back. And Stead wants to help her over that hurdle.
The fact that Wheeler is an adult doesn’t mean anything for the equipment department, Stead explained. Riley serves children, of course, but the rehab equipment department sees people regardless of age, though typically those with a childhood-onset condition.
As with occupational therapy, the goal of the adaptive equipment unit is to improve a person’s quality of life by allowing them as much independence as possible.
“We are part of rehab services, but I solely see patients for equipment needs,” Stead said. Those might include wheelchairs, baths, medical strollers or safe-sleep beds for kids with cognitive or behavioral disorders.
“We evaluate for new equipment if they’ve never had it, or for Kristin, she’s seasoned. She’s been here for a long time, so we look at what we need to do to change things to give her as much freedom as we can.”
Seeing the changes she and her team can make in patients’ lives is what makes her job rewarding, said Stead, who evaluates about 35 children and adults each week and makes recommendations for equipment additions or adjustments. Some of those minor adjustments can be made in-house, while others require outside manufacturer attention.
“Our goal is for you to do as much as you can for yourself,” she tells Wheeler.
It’s exactly what Wheeler wants for herself.
“I want to do that, but my body gets in the way,” she said.
She’s been using this chair for about two years, but the rear-wheel steering has been a challenge for her. Back in high school, Wheeler would zip down hallways so fast her classmates called her Danica Patrick. But the progression of her illness put the brakes on some of that freedom.
So Stead’s job is to figure out ways to work with Wheeler’s abilities to help her. That could mean first moving the joy stick closer to her right arm, which tends to tighten and curl up, making it difficult for her to extend her fingers. “We need to get this closer so you can drive more successfully.”
Or someday it could mean exploring head controls.
“There are multiple ways to drive a chair, Stead tells Wheeler. “I have one patient who drives with her toes.”
As she observes Wheeler’s slumped posture in the chair, she asks if she is wearing her seatbelt. Wheeler admits she isn’t, saying “I’m a rebel.”
“Now that you’re not in regular therapy, your body is getting tighter and tighter,” Stead explains. “Seeing your posture right now with your arm tucked I can understand you not being able to drive very well.”
If she would wear her seatbelt, Stead tells her, it would pull her hips back and keep her from sliding down in the chair, which often leads to discomfort.
As she wraps up an hour-long session with Wheeler, Stead makes notes and consults with a power chair manufacturing representative who will make recommendations on adjustments. She knows that Wheeler is frustrated by her inability to do more for herself but marvels at her spirit.
“She hopes to inspire other people, to show them what they’re capable of despite what their bodies may present.”