Duluth college student conducts research where she got life-changing treatment
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When Brenda and Mark Grim brought their second daughter, Arden, home from the hospital in 2004, everything seemed perfect. But soon, Brenda, an ICU nurse, began to notice her daughter’s development didn’t seem right.
“At about two months of age, we noticed that her right hand was a lot more fisted than her left,” recalled Brenda. Her right arm was constantly up against her body.
Their pediatrician told them not to worry. But she persisted, and a couple months later, they saw a neurologist. An MRI confirmed the diagnosis. Arden had cerebral palsy. Two months before she was born, she had a blood clot on the left side of her brain that caused a stroke which weakened the right side of her body, a condition known as hemiparesis.
That neurologist told Arden’s parents she may never be able to walk or talk or function successfully in life.
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“We looked at each other and just decided in that moment that that isn’t how we were going to let this play out,” recalled Mark Grim. “We were going to do everything in our power to get our child to have her best life.”
Through other parents they met with children with the same diagnosis in the Twin Cities — where they lived at the time — they learned about a research clinic that offered intensive therapy for kids to improve their motor skills.
So when Arden was just two years old, they packed up their three young kids and drove a thousand miles to the Neuromotor Research Clinic at the University of Alabama-Birmingham.
Arden had a cast put on her dominant, left arm. Then, for six hours a day for an entire month, she worked with therapists to improve the functioning of her weaker, right side. The technique is a form of therapy known as “constraint induced movement therapy.”
When they removed the cast toward the end of the month, therapists worked with her to tie her shoes, button a sweater, put her hair in a pony tail — “all the things none of the rest of us ever think about, that just took her a lot longer to achieve,” said Brenda Grim.
By the time she was 7 years old, Arden had spent four months of her life in Alabama, undergoing therapy.
Her parents say they saw immediate benefits, and not just in her improved use of her weaker hand.
“I think as big a part as the physical is that they taught her to believe in herself,” said Mark Grim.
“They allowed her to see that you can do anything,” added Brenda. “This does not have to hold you back. That was their spirit.”
“I like to say I wouldn’t be who I am today if I hadn’t done that therapy,” said Arden, now 21, at her family’s home in Duluth. “It was incredibly life changing.”
‘Full-circle moment’
More than a decade later, Arden was studying neuroscience at Smith College in Northampton, Mass., when she saw a flyer for a fellowship program at the same research clinic she had attended as a child all those years ago. The center had since moved to Virginia Tech.
She applied, and for ten weeks this summer, she worked alongside some of the same therapists who treated her as a toddler.
“To see her come in as an adult, to be an intern in the clinic, not to receive treatment, was really a full-circle moment,” said Mary Rebekah Trucks, who’s now associate director of clinical education, training and implementation at the Neuromotor Research Clinic.
Arden’s project was to study differences in outcomes from three hours of daily therapy versus six hours, which she received as a child. But Trucks said she did so much more.
“Arden could go in, and she had moments where she could interact with kiddos who, I mean, she could picture herself there years ago,” Trucks said it was powerful for Arden “to be able to say to them, ‘Hey, I learned to do this. I know it’s really hard now, but this is something you can do.’”
Before she left, she filmed a series of videos of how she performs daily tasks, which Trucks plans to show to children undergoing therapy.
For example, Arden said she helped teach kids to zip their jackets — a task she also struggled to master.
“It’s difficult because it is very much a two-handed task,” Grim explained. “Being able to put the zipper together is a very challenging fine motor skill. And so a lot of young kids struggle with it. So that was really cool, being able contribute in that way and make that connection with the kids so they don't feel so alone.”
A budding neurologist
The kind of therapy that Arden received as a child — constraint induced movement therapy — is now “quite well accepted,” said Dr. Tom Novacheck, a pediatric orthopedic surgeon who chairs the Cerebral Palsy Institute at Gillette Children’s Hospital in St Paul.
Ongoing research is now pushing the therapy even further, Novacheck said. One technique uses electrodes to stimulate the motor cortex in the brain to retrain neural networks and stimulate muscle development.
A pilot study at Gillette examines the effects of constraint induced movement therapy on infants. Many children, including Grim, didn’t start the therapy until they were two years of age or older.
Over the past 30 years Novacheck has seen significant advances that have helped to improve the quality of life for people with cerebral palsy — to “help every child live to be their fullest version of themselves,” he said.
That’s a mission Arden also hopes to fulfill. After she earns her undergraduate degree, she plans to apply to medical school. Her goal is to become a pediatric neurologist, so she can treat children who have conditions like hers. She was also diagnosed with epilepsy at age 10.
“There aren’t that many people in the medical professions, especially doctors, that are disabled, and I think that perspective is very unique, and could contribute a lot to the families coming to seek care,” said Arden.
She believes she could provide additional support, insight and comfort to those families, as a provider who has a similar neurological condition as their child.
The next step in her journey begins Thursday, the first day of class for her senior year at Smith.
