For some children, like Zack Lystedt, head trauma requires comprehensive rehabilitative therapy, sometimes years of it. That’s where UW Medicine’s Department of Rehabilitation Medicine and UW Medical Center’s Brain Injury Rehabilitation Program come into the picture. Kathleen R. Bell, M.D., Res. ’84, UW professor in the Department of Rehabilitation Medicine, is the program’s physician and the project director for UW Medicine’s Traumatic Brain Injury Model System.
Bell is also Zackery’s attending physician for rehabilitation. What you often hear, she says, is that severely injured patients have a one-year window in which to make progress. After that, the patient won’t get better. “Zackery is certainly putting the lie to that,” says Bell.
It took nine months after his injury for Zack to say his first word — now he’s rhyming with his favorite rap stars. It took 20 months for him to hold up his body, a milestone also marked by the removal of his feeding tube. Now, four years after the injury, his dad reports that Zack can get out of his wheelchair and stand; he uses a walker and is learning how to use stairs. The Lystedt family has worked together on these achievements. Mercedes Lystedt, Zack’s mom, is a full-time caregiver, and she manages the 40 hours a week Zack spends in therapy at various facilities.
At UW Medical Center, says Bell, they work on walking and strength, and on cognitive and intellectual skills: reading, writing, memory. Zack also gets counseling. “One of the things that people have to deal with is that their lives often change rather drastically after TBI, and there’s a lot of learning how to deal with your new life and your new abilities,” she says.
Not everyone with TBI has the support of a loving family and comprehensive medical care. In part, says Bell, this is a feature of the medical system, geared to pay for short-term issues. “That acute attention is there, but brain injury isn’t something that gets better in 12 weeks, like a fracture does,” Bell says. And given the cohort of people who sustain TBI — young men between 15 and 24 are the largest group — that’s an unfortunate situation.
“These are not people who have jobs, these often are not people who have established relationships, they’re still learning how to be adults,” says Bell. “And now they’re given an injury which makes it even harder for them to get a job, to find relationships.” There are only four daytime treatment programs in the state for people with TBI, she says. “If you can’t go to work, but you’re not developmentally delayed, you fall between the cracks,” says Bell.
Other researchers echo the sentiment — that not enough attention or funding has been directed toward brain injury. “Brain injury is the greatest ‘orphan’ disease there is,” says Chesnut, even though it’s the No. 1 cause of death and disability for Americans 45 and under. “We’re still hoping somewhere out there, somebody will recognize how much of a need there is to support research.”