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Mind Your Brain: Closing the Gap for Brain Injury Survivors

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In 1989, Trisha Meili was viciously attacked, leaving her with extensive injuries, 75 percent blood loss and a severe traumatic brain injury. Doctors didn’t think she’d survive. But Meili did more than survive. She thrived. What kept her going is part of the message she’ll share with attendees at this week’s  annual Mind Your Brain @ Penn Medicine conference, all of whom are brain injury survivors, families, and caretakers.

Meili says three factors kept her motivated during her long recovery: support, hope, and inspiration.

After the attack, extensive media coverage brought Meili -- who was known only as the Central Park Jogger at the time -- hundreds of cards and letters of encouragement and prayer, which were “a real power. I had the whole world with me, pulling for me,” she said. This support -- from family, friends, colleagues, and strangers -- “was crucial to my recovery.” She stresses the importance of both survivors and their families and caregivers being “proud of what [TBI survivors] can do and not looking at what they can’t. Recognize that the person is not the same but different doesn’t mean worse.”

Hope is essential, Meili says. When brought to a rehabilitation hospital to continue her recovery, she was unable to walk, find balance, or speak clearly. But, slowly, she saw improvement. “The gains may be tiny but you see them. I remember thinking ‘This is pretty good. Every day things get a little better.” Today she encourages survivors to “live in the now, not getting caught up in the past and wishing for the future. The only place you can change the future is in the present.”

Meili is inspired by those who have suffered TBIs and, in turn, tries to inspire others. She became involved with Achilles, International, a running, walking and wheeling program for people with all types of disabilities, and helped found its Hope & Possibility Race (named for her book I am the Central Park Jogger: A Story of Hope and Possibility.) “It’s all about setting a goal and working towards achieving it,” she said. “I think the confidence built from achieving a goal can be transferred to other aspects of rehab or in your life.

“The human spirit is an amazing thing. We inspire one another.”

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Mind Your Brain will also present a survivor panel, which will include Samantha Lambert, the 2016 Miss Pennsylvania. Once a competitive gymnast, Lambert suffered a brain injury when she was 15, hitting her head on the edge of the floor during practice. Although diagnosed with a possible concussion in the ER, “I didn’t feel anything was wrong.” That changed when she went to school the next day. The fluorescent lights caused her to pass out; the TBI had resulted in an extreme sensitivity to light and noise. “I couldn’t handle being in school for long periods of time,” she said. “I had to have school work sent home.”

Like other TBI survivors, Lambert discovered that people didn’t always believe that she was experiencing symptoms of TBI. “One teacher said, ‘She was smiling in class. She must be making this all up,’” she said. “It was difficult to communicate with teachers – it isn’t something you can see.”

During her recovery, Lambert found support not only with family and friends but from other TBI survivors. “I listened to what others had gone through – all common experiences and struggles.”

As Miss Pennsylvania, Lambert tries to raise awareness of TBIs and speaks about finding resources to help for problems that occur after rehabilitation ends… a topic she will cover at the Mind Your Brain conference. “There’s a gap in care after rehab ends. Patients still have problems but don’t know who to turn to,” said Sean Grady, MD, chair of Penn Neurosurgery. “Mind Your Brain provides information and resources to help patients with TBIs.”  

The conference will also include a panel of Penn researchers, discussing ongoing studies for future therapies, such as the use of advanced MRI neuroimaging as a potential diagnostic tool. However, finding ways to treat TBI remains a challenge. “It is a heterogeneous condition. There is a lot of variability across injury mechanism [eg, car accidents, falls, or assaults], severity, and outcome,” said Ramon Diaz-Arrastia, MD, PhD, of Neurology. “We’ve assumed that all TBIs were the same, but that’s not the case. It’s unrealistic to think a single therapy will work on all injury mechanisms.”

Penn recently joined a national, multi-center study -- TRACK TBI (Transforming Research and Clinical Knowledge in Traumatic Brain Injury) -- which hopes to develop “methods to identify patients who have a particular injury mechanism, who can then be targeted by a specific therapy,” said Diaz-Arrastia, who is one of the study’s national leaders. The goal of the study is to collect and analyze data from 3,000 subjects.

 Mind Your Brain @ Penn Medicine will include presentations, interactive discussions and resource sharing by a variety of authorities, including Penn Medicine’s experts on neuroscience and brain injury, physical, occupational, and speech therapists, and brain injury survivors.

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