When Jimmy Roberts of Greeneville, Tennessee, experienced a seizure and fell off a fishing boat, the back of his head struck the pavement. In that instant, the resulting traumatic brain injury (TBI) dramatically altered his and his family’s life forever.
His seizure was likely caused by a brain injury he received when he was kicked by a horse a year earlier. At that time, his medical team told him he was extraordinarily lucky to walk away with only broken ribs and what was then classified as a concussion.
But Roberts didn’t feel lucky. He began having serious memory issues to the point he could no longer work as an expert witness providing testimony for the utility industry. So, he began selling boats for a living. Frustrating months of specialist appointments, scans and neurological testing failed to reveal why he still couldn’t think straight.
But something was definitely wrong. One day he drove to the grocery store and was lost for three hours. He had traveled into neighboring North Carolina.
“Looking back, we realized we couldn’t count the number of concussions he’d had,” said his wife, Amy Roberts. “Over his life he had been a skateboarder, a surfer; he’d played soccer, and when he was working as a firefighter, he’d had ceilings fall on his head.”
Amy Roberts shared that while sitting in the trauma intensive care unit after Jimmy’s seizure and fall, she received a physician’s report from a neuropsychological exam performed months earlier. It concluded that her husband was “malingering” and “faking his symptoms.”
The rage and despair she experienced in that moment was unimaginable, she said. She and the couple’s three children had watched the husband, father, provider and friend they’d always known disappear following his brain injuries. Caring for him and seeking the help he needed had become a focus for them all.
Now, Amy Roberts has been asked to share her experiences as the wife and caregiver of an individual with a TBI as part of a new advisory group to help guide scientific investigations — the LIved experience advisory board for Brain injury ReseArch, or LIBRA.
The board is a partnership between the Brain Injury Association of Tennessee and the Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center at Vanderbilt University Medical Center. Yelena Bodien, PhD, Mayur Patel, MD, MPH, and Amelia Maiga, MD, MPH, faculty members of CIBS and the Division of Acute Care Surgery, are co-leading the group at VUMC.
“As investigators, we want to conduct research that is meaningful to those who have survived brain injury and to their families and caregivers,” said Bodien. “Historically, these key stakeholders have not had an opportunity to contribute to determining study questions, developing study design, or interpreting study results.”
Bodien is a clinical neuroscientist with broad expertise in brain disorders related to coma, consciousness and TBI.
“We want to change the paradigm by partnering with those who may be helped by our studies so that we conduct the most impactful brain injury research possible,” she said.
The 13-member advisory board, which includes individuals with brain injuries of various causes and family caregivers of loved ones with brain injuries, will meet at least three times a year to share their wisdom with investigators conducting brain injury research. Adult and pediatric patients are represented, as are members of the military injured during service.
In January, the Centers for Medicare and Medicaid Services added TBI to the list of chronic conditions for chronic special needs plans. With this acknowledgement, there is hope that awareness and support for brain injury research will also grow, Bodien said.
In August 2021, Daniel Frazier was working as an insurance claims adjuster in Canada, far from his home in Nashville. The COVID-19 pandemic had halted his long career managing global concert tours, so he found other employment. While he was assessing storm damage on a two-story house, he fell 30 to 40 feet to the ground. He was hospitalized with a TBI, two fractured vertebrae and a fractured ankle. As his bones began to mend, the injuries to his brain continued to manifest.
“I was then faced with the difficulty of the hidden scars, the hidden symptoms of TBI,” he said. “The constant reminder that something big has changed.”
Frazier’s symptoms included ringing in the ears, extreme sensitivity to light, and difficulty focusing on a single voice in a busy setting like a crowded restaurant. His senses of smell and taste were also impacted.
He decided he needed to “tour manage his recovery.” He began assembling what he calls his “crew,” including a chiropractor and a sports medicine physician experienced in TBI and concussion recovery.
Now, Frazier, too, has been asked to serve on LIBRA and said a recent virtual meeting of the group was gratifying.
“It was really special to see all of the brain injury survivors and family members on the call for the advisory board,” Frazier said. “We were all echoing the same thoughts about the need to research what happens when you leave the hospital. That’s where the battle really starts. They’re fighting for our lives in the ICU, but after you get sent home and you wake up in the middle of the night, there’s no nurse there. You’re going through it alone.”
“Our first advisory board meeting was nothing short of inspiring,” Bodien said. “Despite the long and difficult journey that begins after hospital discharge, the participants’ stories were filled with hope and resilience. We left that meeting reenergized and motivated to continue pushing the boundaries of brain injury research.”
As for Amy Roberts, she’s hopeful that by sharing her family’s experience, better resources, research and support will be available for the next family that faces a debilitating brain injury.
“I don’t want anyone else to go through what I went through alone,” she said. “The ability to have such beautiful brains all together — you know a few people can do great things. If I can help just one person, that’s huge.”
