"I think people have misconceptions about me, and about individuals with TBI in general," said Nick Devries.
Nick Devries works with graduate clinician Jessica Zumbo '09G on using an external memory device aid.
A Second Chance
Nick DeVries' life changed drastically back in July of 2007. The Rochester native, now 27, was living in California and working for a large corporation in their customer service division. Nick had earned his bachelor's degree at the University of Buffalo, and was just starting to think about enrolling at California State University to study architecture. All told, life was pretty good — until the accident.
"I don't remember any of it," says DeVries, who had been on his motorcycle that night. "All I know is that I was in the exit lane, and then nothing."
After spending five weeks in an induced coma to minimize brain swelling, DeVries was medevaced back to Rochester to be with his family. Now, after nearly two years on the road to recovery, DeVries is a regular visitor to Nazareth College's Aphasia Clinic, where he is one of the many clients with traumatic brain injury (TBI) who are working their way back to a more independent life.
The Facts About TBI
TBI, a major cause of death and disability worldwide, occurs when sudden damage to the brain produces a diminished or altered state of consciousness. The trauma results from a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Injuries may range from mild, with a brief change in mental status or consciousness, to severe, involving an extended period of unconsciousness or amnesia.
Typical symptoms of TBI may include any or all of the following: lack of motivation; inability to efficiently process information; irritability, depression, and anxiety; increased fatigue and headaches; memory loss or disturbance; behavioral issues; and post-traumatic stress disorder.
In the United States alone, traumatic brain injuries occur every 21 seconds, resulting in some 1.4 million cases per year. Direct medical costs related to TBI and indirect costs such as lost productivity can be staggering. In 2000, the latest year for which figures are available, the direct and indirect costs of TBI totaled an estimated $60 billion in the U.S. Overall, some 5.3 million Americans have a long-term or lifelong need for help performing daily living activities as a result of TBI, according to the National Center for Injury Prevention and Control.
The good news is that for people with traumatic brain injury, the outlook is more encouraging now than it has ever been. Current research and practices provide much greater opportunities for those living with TBI today. It is important to realize, however, that the road back to health after a brain injury is generally still a long and difficult one.
Emilie Feltner '09G, a graduate student in Nazareth's speech-language pathology program who works at the Aphasia Clinic, is learning the need for patience. Mostly, Emilie works with stroke victims, but she does have one TBI client — a woman in her late twenties who is recovering from the effects of a brain injury sustained in a motor vehicle accident. She is nonverbal and Feltner works with her on augmentative and alternative communication by helping her type words.
Feltner's most important discovery so far is that success doesn't come overnight for people with TBI. "I've learned to celebrate the little successes," she says. "It all comes with baby steps. But it's really inspiring to see how hard someone can work. It makes you never want to complain about having a bad day again."
For clients like Nick DeVries and students like Emilie Feltner, the Aphasia Clinic offers a very special environment in which to learn — and relearn. In fact, over the years Nazareth has been at the forefront of TBI research and outreach in many significant ways.
The Changing Face of TBI
Nazareth College has been offering a course on TBI ever since Shirley Szekeres, now dean of the School of Health and Human Services, joined the faculty in 1991. Szekeres, who created the course after working in Pittsburgh at one of the premier programs for brain injury in the U.S., is nationally respected as an expert in the field, having published nearly 30 articles and book chapters and given more than 50 regional and national presentations on the subject of TBI. Nazareth also employs several other faculty members who have extensive experience working with children and adults with TBI in acute care, rehabilitation, outpatient, and school and vocational settings.
In addition to its Aphasia Clinic, Nazareth College also maintains partnerships with the Hickok Center for Brain Injury and St. Mary's Hospital Brain Injury Unit, both in Rochester. At those sites, Nazareth graduate students help provide inpatient and outpatient therapy for people learning to meet their life's goals after traumatic brain injuries.
Today, due in large part to the kind of therapeutic programs provided by Nazareth College, the outlook for people with TBI is very different from what it used to be. In the past, traumatic brain injury was little understood and often hidden away by families who held modest hope for the recovery of their loved ones.
Looking back to the mid-1980s, Szekeres recalls one of the first cases of TBI with which she was involved. A man in his 30s, a husband and father, was about to turn into his driveway when he was hit by another car. Coming out of a coma after several months, he was often confused and forgetful. Today, such consequences from TBI are recognized as typical, but that was not the case then. "We weren't sure how to interpret many of the behaviors we were seeing because they were not well-documented," Szekeres recalls.
Now that there is a case history of TBI spanning over generations, it is evident that TBI has been a fact of war at least since World War I, although the syndrome was not then named. Indeed, there is a feeling among many neurologists today that the thousands of World War I soldiers who suffered from so-called shell shock actually had mild cases of TBI. These days, TBI, which has been dubbed the "signature wound of the Iraq War," is receiving increased attention as head injuries are becoming more severe because of more powerful explosive devices. Even shells detonated a mile away from a soldier can cause lasting damage to his or her brain. Also, because they are protected by better equipment, a higher percentage of soldiers today are surviving head injuries that would have been fatal in previous wars. The 2008 death of Tom McHale, a nine-year NFL veteran and former Tampa Bay Buccaneer who died at 45, has also focused attention on the incidence of chronic traumatic encephalopathy (CTE), a degenerative brain disease caused by head trauma, among professional football players.
Clearly, there is still much to be learned about TBI. For instance, recent studies have suggested that both moderate and severe TBI can cause epilepsy and increase the risk for Alzheimer's disease, Parkinson's disease, and other brain disorders that become more prevalent with age.
"We used to call this 'the silent epidemic' because there was so much happening but people didn't have a real understanding of what it was," says Szekeres. "It has been quite a journey."
Centers for Healing
Clients like Nick DeVries turn to Nazareth's Aphasia Clinic for interdisciplinary, clinical experiences led by teams that include graduate students in speech-language pathology, art therapy, music therapy, nursing, physical therapy and social work.
"I see my biggest challenges right now as improving my memory and working on my speech impediment and handwriting," says DeVries. At the Aphasia Clinic, he is working primarily on his speech issues. "I think people have misconceptions about me, and about individuals with TBI in general," he says. "My speech impediment gives people the wrong impression and makes them automatically assume that I'm drunk or mentally handicapped. My balance issues don't help much to correct that impression."
DeVries, who has progressed since his accident from a wheelchair to a walker and is now fully mobile (in fact, he recently received a new driver's license), goes to the clinic twice a week for an hour at a time. The clinic usually sees less than a handful of TBI clients in a semester, but in late 2008 it provided services for seven individuals, ranging in age from 21 to 78.
"The clients we see here are those folks and families who feel they don't have any services left," says Merideth Rao, an assistant clinical professor and coordinator of the on-campus Aphasia Clinic. Rao explains that the clinic provides affordable care for the underserved - many of whom have used up their allotted medical funding but would like to continue treatment.
Among the features of the clinic is its recently constructed "home transition laboratory," with a kitchen, bathroom, laundry room, and sleeping area. This resource helps clients practice cooking and other household chores that may be difficult for them. In the Clinic's encouraging, non-threatening environment, clients are able to analyze their behaviors and discover useful strategies, such as making lists or, in Nick DeVries' case, relying on a BlackBerry to pick up where his short-term memory leaves off. "That's where the learning comes into play," says Rao. "Gradually, the independent use of strategies becomes like a new habit."
The Clinic also provides a community for people with TBI, who may feel set apart and isolated as a result of their injuries. "The clinic brings a lot of people together," says Rao. "Some clients say they don't really talk much outside the clinic, but when they come here they feel very open and just like everybody else."
Nazareth also has an ongoing collaborative relationship with the Hickok Center for Brain Injury, a facility that offers a safe, supportive environment in which brain injury survivors are encouraged to design and direct their own lives' journeys. The Nazareth graduate students help members of the center compensate for memory problems, learn organizational skills, develop relationships, and engage in conversations.
"The students from Nazareth have a special way of being able to teach people, to talk to people, because they already know what the issues are," explains Elaine Comarella, the center's CEO. "And when they're not here, we miss them. There are times during the year when they can't come, and the members are continuously asking, 'When are the "speechies" coming back?' That's what they call them. They really enjoy the students."
One of the "speechies" currently working at Hickok is Jennifer Rosney '09G, who is earning her master's degree at Nazareth in speech-language pathology. Rosney, who started at Hickok at the end of January, is there three days a week from 9 a.m. to 2 p.m. She is mostly involved with group activities, helping to facilitate a current events circle in which participants, all with TBI, look at articles from the newspapers, pulling out salient information and improving their reading comprehension and social interaction. "They are all so bright," says Rosney. "Very motivated and eager to improve and interact. It's such a great population to work with."
While she's not sure what the future holds for her, her experience working at Hickok has made Rosney think about working with a similar clientele when she graduates from Nazareth. "I would certainly consider it," she says. "My clients are so eager to improve and it's so rewarding to work with them."
For people with TBI the help that is available through Nazareth College can provide a second chance at life. "I'm very close to moving out of my parents' house now and living on my own," says DeVries. "And I'm exploring going to architecture school again. I may need someone to take my notes for me, but I think I'm ready."
According to the Department of Defense, more than 5,500 military personnel have suffered traumatic brain injuries during the conflicts in Iraq and Afghanistan. In fact, it is now known that those who have served in Afghanistan or Iraq are at a much higher risk of TBI than combat veterans from previous wars. In the Vietnam War, 14 to 18 percent of all veterans had a brain injury. Today, the Walter Reed Army Medical Center says 31 percent of those admitted between January 2003 and May 2005 had some kind of brain injury. Public awareness of TBI also reached new levels during the Iraq War when television journalist Bob Woodruff was struck by shrapnel from a roadside bomb. Millions of viewers followed his plight and recovery.
Working closely with the Veterans Outreach Center, Nazareth College is starting to focus on the emergent problem of TBI among returning military members. Nazareth's School of Health and Human Services offers diagnostic, therapy, and wellness services to veterans, while the College of Arts and Sciences helps them with resumes and other business in its technology center.
"There is much that Nazareth can and will do to help our military men and women recover from the injuries they have sustained," says Daan Braveman, Nazareth College president.