Living with traumatic brain injury

Jenna Sneva comes home from classes at Oregon State University (OSU) to begin "repetition and redundancy" on that day's classes, two or more hours a day, before she is able to start homework assignments. This is the price she pays from experiencing traumatic brain injury.

Three years ago, Sneva's life was predictable: Olympic Ski Cross Team, a college degree and then focus on a future of work, family and plans. That came to a halt when she was diagnosed with years of multiple, but previously undiagnosed, concussions. The first one occurred when she was 8.

Sneva will not ski again. Nor will she do other winter sports, play soccer or softball, wake board or white-water raft, all those sports passions for which she lived before her world began to collapse. One more concussion could result in paralysis, comma, disability or Parkinson's Disease, with high risk of Alzheimer's or dementia, suggested by the first six years of research.

In 2010, Sneva won the 16- to 18-year-old Women's National Championship Ski Cross in Colorado. That was the last time she skied.

"Now my sport is coin collecting with my grandpa, and some golf," she says with a smile.

Sneva has transformed her life by accepting the reality of her disease and adapting to her "new normal." This does not mean that she wouldn't want everything to return to her championship seasons, her teams and her drive to be a Class A athlete.

Hers is a story that did not promise a happy ending. It is also a story of perseverance, the right medical team and a personal goal to promote awareness of the threats inherent in concussion. Because of this desire, her story has a different kind of happy ending.

"One high school kid who can benefit from my story, hears and understands the risks of not leaving a sport behind and saving his or her future will mean my goal to get the word out has succeeded," Jenna says with great sincerity.

Sneva was a presenting speaker on March 15 at the Oregon Department of Education CIBRT (Concussion Injury Brain Research Training) program in Eugene. Educators, coaches, athletic trainers and psychologists from across Oregon were mesmerized by the 22-year-old's story. She was also a presenter at a Youth Sports Concussion seminar sponsored by The Center and St. Charles Medical Center in April, 2012.

Current research in Tramatic Brain Injury (TBI) has resulted in Max's Law, which requires a child in the Oregon Schools Athletic Association sports programs to be removed from play until the child gets a doctor's release. Sneva wants this applied to club sports as well. She will speak in an Oregon legislative session about this protection on April 2 when the subject is presented by the experts in the field.

Her biggest contribution may be the Web page she developed with assistance from many people that has reached across the nation and has created a casual support group of other youth who have experienced this condition. Most of these have found their way by doing Internet research on TBI and discovering a friend with whom to commiserate and get encouragement.

The college junior, who plans to graduate with a degree in psychology before she enters a PhD program, also received unexpected support from her university. She was placed in disability services at OSU in a program that allowed her to retain full-time status with three to six credit hours per term, a program that includes young adults in special education at the college level. Along with reduced hours, the program allowed extended time for examinations and flexibility in attendance.

"It was a safety net and it made me not feel alone," she explained. "The first time I went to the counselor in the disabled program, I almost cried when I knew I had to ask for help. OSU gave me great support."

She has been on the Dean's List for the last two terms.

Sneva's ability to carry a full load of college classes, with the intent to graduate in the spring of 2014, was a fantasy two years ago. Wanting to be helpful, some of her neurologists suggested that the door of higher education was probably closed to her because of the brain injuries. She was told to quit school, go home and adapt to her condition, a life far removed from what had appeared to be her future.

However, Sneva "bartered" with her physicians, got into the disabled program and began her public speaking campaign to increase awareness. This summer, she has been offered an opportunity to shadow one of her neurologists at Oregon Health & Science University in Portland. She seems to have become the poster child of what might be accomplished despite the diagnosis.

Sneva knows this is not only the result of great medical care, but also from her family, her school and her boyfriend, Remington Pike. "Rem says he's the one who picks her up when she falls down," her mother, Ronda Sneva, expressed with gratitude.

Ronda Sneva has also spoken at the concussion conferences to give a perspective on how a family needs to adapt. "Our biggest challenge from the beginning - and even now - is remembering what can throw Jenna off balance." Something as simple as moving her personal items from where she has placed them has been disruptive enough to send Jenna in a spiral of disorientation. "I've done that," said her mother, "and I learned a big lesson. There may be a need for therapy for the families of these young people to help them remember day to day what to do and not to do."

Sneva's life has to remain on a very organized schedule for her to function in daily life. Although she no longer needs note cards to remind her what to do next in her day, she says she still sometimes visually recalls the note cards to keep on track.

"The cognitive therapy for my brain remapping, exhausting and difficult as it was, has brought me back," she expressed. For an outsider, there is no indication that this young woman has any extraordinary problems or challenges. But not all cases have such good results. Sneva's early brain tests suggested suicidal depression. She denies feeling suicidal throughout her ordeal, but that may not be true for another young person.

Sneva has recently released a video on YouTube, produced by Joe Leonardi of Leonardi Media Arts.

"I want there to be easy access for high school athletes to find out what happens when you don't stop playing, when you don't sit it out." Electronic communication has seemed to work. Sneva tells a story of a trainer who would not allow a young man to finish a sports season after a concussion. "The kid's father went into the trainer's room, and the trainer was expecting the man to be angry. The dad told him he'd read my story (The Nugget, 2011), and he wanted the trainer to know the family would do whatever was necessary for their son." For Sneva, that's the ripple effect she hopes will continue to spread.

"High school kids don't want to listen to doctors and experts tell them these things. Just like them, for me being an athlete was number one. My family and I love sports, but we don't want to see anyone ending up like I did. They may pay attention when they hear it from me. A concussion is not a broken bone, not visible, but it deserves maybe even more respect."

The Sneva family is offering an annual scholarship to a Sisters High School student who has suffered a concussion, from sports or another source.

For more information or to view the video, visit www.takingitheadon.comor search for "Jenna's Concussion" at YouTube.com.