In This Issue. From Combat to Community: A Long Road Home

Transcription

1 A P U B L I C AT I O N O F T H E B R A I N I N J U RY A L L I A N C E O F C O N N E C T I C U T V O L U M E 6 In This Issue From Combat to Community: A Long Road Home Increasing Independence through Assistive Technology Neuroplasticity: The Brain s Capacity to Reorganize Evaluating an Attorney s Expertise Research Spotlight: Chronic Traumatic Encephalopathy (CTE)

2 Brain Injury Alliance of Connecticut The Brain Injury Alliance of Connecticut (BIAC) formerly known as the Brain Injury Association of Connecticut is Connecticut s partner in brain injury prevention and recovery. BIAC is the only non-profit organization in the State dedicated to providing brain injury survivors and their families with the resource information and support they need completely free of charge. As a partner in prevention, we work with individuals, organizations, schools and government to reach and educate those in our communities about both the causes and realities of brain injury. As a resource in recovery, our brain injury specialists work to ensure that survivors and their families are connected to the appropriate services and professionals. We also work to facilitate both independent living and meaningful inclusion at home, at school and at work. Programs and Services The following programs and services are among the many initiatives sponsored by BIAC in support of brain injury survivors, their families and caregivers, professionals, and the community. Individual Consultation Through BIAC s HelpLine, brain injury specialists provide individual support and guidance to survivors and caregivers to ensure that the often complex and overwhelming challenges they face are negotiated more easily and effectively. Statewide Support Groups BIAC sponsors numerous support groups throughout Connecticut that provide information, support and encouragement to survivors, their loved ones and their caregivers. Outreach and Education BIAC works to increase awareness and understanding of brain injury and its prevention through school, professional and community presentations. Professionals in the brain injury community can also attend BIAC s Annual Conference to learn the latest developments in the field. BIAC Support Groups No matter where you live in Connecticut, there is a BIAC support group nearby prepared to offer a warm welcome. H H H H H H H H H H H HH H H H H H H H H H H H H H H H H H H H Contact BIAC for meeting times and locations. To learn more about BIAC s programs, visit or call BIAC at or toll-free at

3 A Welcome from the Executive Director W elcome to Brainwaves, the Brain Injury Alliance of Connecticut s nationally award-winning publication. We ve changed the name and look of this magazine but not the importance of its content. In the pages of Brainwaves, you will always find links to resources, information on research and new developments in brain injury, and answers to your questions by leading professionals in the field. What we hope you will also discover is the knowledge that, while we may not have all the answers, the Brain Injury Alliance of Connecticut s dedicated professional staff is here to assist you with finding them, whether you are a service provider in the field, caregiver, survivor or friend. Join us as we talk with Chris Nowinski, Co-Founder and Executive Director of the Sports Legacy Institute, and learn about the important research being done by the Center for the Study of Traumatic Encephalopathy. Their work studying the brain and spinal cord tissue of former athletes has gained significant national recognition. Examine the wide array of Assistive Technology options available for brain injury survivors. Read about the federally funded initiative being piloted in Connecticut to connect veterans and their family members with important resources and supports. Learn about neuroplasticity, the brain s ability to reorganize. Acquire essential information about the complexities of legal representation for those with brain injuries and the practice of neuro-law. Do you have a topic you would like to see explored in Brainwaves? Do you want to learn more about BIAC s support groups or need more information on a resource? Whatever your question, we want to hear from you. Finally, we extend our gratitude to the law firm of Silver Golub and Teitell for sponsoring this issue of Brainwaves. Through their generosity, we are able to provide this publication to you free of charge. If you would like more copies, please contact us. Regards, Executive Director Brain Injury Alliance of Connecticut 200 Day Hill Rd., Suite 250 Windsor, CT Table of Contents From Combat to Community: A Long Road Home Increasing Independence through Assistive Technology Neuroplasticity: The Brain s Capacity to Reorganize Evaluating an Attorney s Expertise Research Spotlight: Chronic Traumatic Encephalopathy (CTE) Resources Special thanks to the Brainwaves Editorial Board: Ruth Ann Graime, MA, CBIS Sandy Greenberg Dennis Johnston, PhD Carrie Kramer, MA, CRC, CBIS Julie Peters, CBIS Deb Shulansky, JD BIAC Program Staff Executive Director Julie Peters, CBIS Brain Injury Services Director Carrie Kramer, MA, CRC, CBIS Brain Injury Specialist Melinda Montovani, MSW, CBIS Director of Community Outreach & Support Deb Shulansky, JD Director of Development & Marketing Christine Buhler

4 From Combat to Community: A Long Road Home by Chris Burke, LCSW, LADC, and Jim Tackett I hate it when I hear my co-workers complaining about the smallest things. Things that don t really matter when you think of it. Tom had been home from Iraq five years when his supervisor suggested he get some counseling. On the surface, Tom appeared to be doing well. He had a new family, his career in law enforcement included a promotion to sergeant, and his health was stable despite numerous combat injuries. Tom admitted he approached the suggestion from his supervisor to get counseling as something he did just to keep him happy. By the end of the first meeting, Tom was able to verbalize what he knew all along but never talked about; that he was not the same man now that he had been before his deployment to Iraq. One day he described how unfulfilling his job had become. A typical day now involves pulling old ladies over and giving them tickets for speeding. Do you know what I used to do? When I was in Iraq, thirty of my guys, all of us heavily armed, would jump out of a Blackhawk helicopter, that s how we pulled people over. These guys here, they don t know how good they got it. Transitioning home from war is an experience that is different for every veteran. Tom cruised along for several years before he realized that he was still experiencing effects of his combat and deployment. Some soldiers come home and seek help right away, others may never ask for help, and still others fall somewhere in between. In August 2008, Connecticut was one of six states awarded a five-year, $2 million grant to provide jail diversion and trauma recovery services to military veterans. The grant, formally known as the Jail Diversion and Trauma Recovery Services for Veterans Initiative, was developed by the federal Substance Abuse and Mental Health Services Administration (SAMHSA) in response to the large number of newly returning veterans who were becoming justice-involved. Studies have shown that large numbers of military personnel returning from the wars in Iraq and Afghanistan have struggled with psychological problems such as depression, anxiety and post-traumatic stress disorder (PTSD) (1-4). A recent analysis of the literature showed that up to 20% of veterans who served in Afghanistan or Iraq meet criteria for PTSD after returning home (5). Health surveys completed after a unit s return from deployment suggest that large percentages of service members report experiencing prevalent symptoms that, although consistent with PTSD, do not meet the full criteria for diagnosis. One longitudinal study showed that over 40% of returning veterans reported psychological problems in these post deployment health assessments (2). Many soldiers experience first-time problems with alcohol and other drugs, and among younger service members over 50% reported binge drinking (6). While the majority of soldiers successfully transition from the combat theater to civilian life, the problems that many veterans and their families face during the reintegration process are well documented. Two overarching problems relating to deployment and exposure to stressful and traumatic events involve PTSD and Traumatic Brain Injury (TBI). PTSD often gets the most notoriety and attention, but TBI is an ongoing problem that has recently been highlighted, not only in the media, but also in facilities that are responsible for treating veterans, both at the state and federal levels. In a recent New York Times op-ed piece written by Nicholas D. Kristof, titled Veterans and Brain Disease, he writes about the suicide of a 27 year old Marine who, prior to his honorable discharge from the military, was diagnosed with PTSD. Kristof reports, that [the] story is devastatingly common, but the autopsy of this young man s brain may have been historic. It revealed something startling that may shed light on the 2

5 Veterans Resources Brain Injury Alliance of Connecticut Office: ; toll-free HelpLine: ; serving brain injury survivors, their families and caregivers through a wide range of programs and services, including a statewide network of support groups several of which are specifically for military veterans. Brainline Military help for service, National Guard, and Reserve members, as well as veterans and families living with TBI. Gabor Kautzner applies his personal experience as a combat brain injury survivor in his role as OEF/OIF Outreach Counseling Technician for the New Haven Vet Center. epidemic of suicides and other troubles experienced by veterans of wars in Iraq and Afghanistan. His brain had been physically changed by a disease called chronic traumatic encephalopathy, or CTE, that is a degenerative condition best-known for affecting boxers, football players and other athletes who endure repeated blows to the head. (7) This type of research is one example that underscores the significant challenges professionals face when screening, referring, and treating veterans whose clinical presentations are not consistent with traditional symptoms. We now know that the road home following service in a war zone has predictable emotional and behavioral challenges that every returning soldier, to varying degrees, must face. Research has shown that prolonged exposure to traumatic events, endemic to military service in both Iraq and Afghanistan, can result in physiological changes in the brain. The Department of Mental Health & Addiction Services (DMHAS) Veterans Diversion and Trauma Recovery Program strives to identify, engage and divert justiceinvolved veterans from arrest and incarceration into a seamless, community-based system of treatment and recovery support services. The program operates in close partnership with VA, Vet Centers, and numerous state agencies and community providers, including the Continued on page 12 Connecticut Department of Veterans Affairs ; provides assistance to veterans, their eligible spouses and eligible dependents in obtaining veterans benefits under federal, state and local laws. Connecticut Vet Centers Toll Free: ; Danbury: ; Norwich: ; Rocky Hill: ; West Haven: ; counseling services for veterans and family members. Department of Mental Health and Addiction Services (DMHAS) Military Support Program Contact: Jim Tackett, ; services include outpatient counseling for veterans and family members, case management and a 24/7 call center to access counseling services. Middletown Veterans Diversion and Trauma Recovery Program Contact: Marla Ackerley, LCSW, Team Leader; Office: ; Cell: ; for veterans who have criminal justice involvement in Middlesex County. U.S. Department of Veterans Affairs VA Connecticut Healthcare System West Haven Campus, ; Newington Campus, ; information about federal health care benefits. Veterans Diversion and Trauma Recovery Program/ Pilot Area (New London, Norwich, and Danielson) Contact: Chris Burke, ; Robin Smith, ; Dave Kennedy, ; for veterans who have criminal justice involvement in southeastern Connecticut. 3

6 Increasing Independence through Assistive Technology by Arlene Lugo, MS, ATP What is Assistive Technology? Assistive Technology (AT) can be extremely useful tools to help individuals with disabilities to reduce or remove barriers and increase independence in performing tasks. The definition of AT is very broad, allowing one to consider any item as AT as long as the item increases, maintains or improves functioning for individuals with disabilities. Specific funding sources may have more restrictive definitions of AT, such as insurance companies that will primarily cover the costs for durable medical equipment (DME) only. When identifying an AT device, using the definition in its broadest form allows professionals to be open minded and creative in finding an AT device to meet an individual s specific needs. When considering AT, people often think the device will be expensive. Perhaps the word technology makes one think of computers, software and pricey gadgets, and the fact is that some AT can be costly. But AT does not have to be expensive to be useful. AT falls on a continuum from Low to High Tech devices based on several factors. Low Tech AT refers to devices that do not have electronic components, are not complex and require little or no training. Low Tech AT is easier to learn to use and integrate into a person s life and does not cost much. Examples of Low Tech AT include: handheld magnifiers, timers, grab bars, pillbox organizers, ergonomic pens and highlighters. As one moves up the continuum to Mid Tech AT, the complexity of the device increases, along with the need for training. The devices may contain electronic components and will likely cost more. Examples of Mid Tech AT include items such as alternative mice or keyboards to access the computer, digital recorders, digital pens, amplified or big button telephones, e-book readers or audio books and more. At the high end of the AT continuum the devices are complex, containing multiple features and electronic components. High Tech AT devices will likely require in-depth training to integrate into a person s life and may require retraining. High Tech AT devices will cost the most and include items such as Alternative Augmentative Communication (AAC) devices (allows a user to communicate when speech is limited or not possible), environmental control units, specialized software, Smartphones, ipads, power wheelchairs and modified vehicles. When considering AT it is important to look at the barriers a person experiences in performing tasks and look for the AT solution to reduce or remove that barrier by starting at the low end of the AT continuum. If a Low Tech AT device reduces the barriers and increases independence and functioning, then there is no need to continue looking for higher tech AT. However, if a solution is not found at the low end of the AT continuum, then continue up the AT continuum until an appropriate device is found. AT Services For AT users to have the greatest chance for success in using AT, the device must be accompanied by Assistive Technology services, which include evaluating of the individual s AT need(s); providing AT device trials; designing, customizing, fitting, or adapting the AT device, and training. Research has shown that approximately one-third of AT devices are abandoned, i.e. the AT user stops using the device. Typically, abandonment occurs because the wrong device is provided, the user is not involved in the process of selecting the device or is not given sufficient training on how to use it effectively. Providing appropriate AT services can help to reduce the abandonment of AT devices. AT services help to ensure that the best device is selected to meet the person s needs, that it will perform as expected and the person will actually use it. 4

7 High Tech AT devices will likely require in-depth training to integrate into a person s life. Acquired Brain Injury and Independence of Function An Acquired Brain Injury (ABI) can cause significant barriers to an individual s functioning. Barriers can be present in the areas of organization, concentration, memory, reading, writing, hearing, vision, communicating, and/or other physical limitations. Assistive Technology can be part of the solution to help individuals with ABI increase their functioning and regain their independence. How can the Connecticut Tech Act Project help? The Connecticut Tech Act Project (CTTAP) is a statewide program that assists individuals with disabilities, their family members, educators, employers and other professionals to access Assistive Technology devices and services. CTTAP s programs include AT device loans, demonstrations, recycling, and an alternative financial loan program. CTTAP s Assistive Technology device demonstration centers are operated by partner agencies, including: the New England Assistive Technology (NEAT) Center, the Disability Rights Center of Fairfield County and the Eastern Connecticut Assistive Technology Center. An AT demonstration provides an opportunity for an individual to see and learn about the specific features of an AT device and helps the person to make an informed decision. CTTAP offers recycling and reuse of Assistive Technology devices through the recycling website where used AT devices are sold or donated. AT recycling can also be done through the NEAT Center. The Assistive Technology Loan Program offers a financial loan to allow individuals with disabilities or a family member to borrow funds to purchase AT devices or services, when there are no other funding options available. The Connecticut Tech Act Project s website, contains additional information about resources, funding options and services. AT Resources CT TECH ACT Project ; mission is to increase independence and improve lives of individuals through increased access to Assistive Technology for work, school and community living. The Family Center on Technology and Disability (FCTD): a resource designed to support organizations and programs that work with families of children and youth with disabilities. New England Assistive Technology Marketplace (NEAT) Resource and Education Center or ; provides people with access to products, new and used equipment, training and services that enhance the independence and quality of life for people with disabilities of all ages. About the Author Arlene Lugo, Program Director of the Connecticut Tech Act Project, is a certified Assistive Technology Professional. She also provides consultation on assistive technology to Bureau of Rehabilitation Services (BRS) staff and consumers. 5

8 Neuroplasticity: The Brain s Capacity to Reorganize Reprinted from Making Strides, Volume 5, published by the Brain Injury Association of Connecticut. by Sarah Raskin, PhD The field of neuroplasticity or brain plasticity has emerged only recently, but it has generated considerable excitement about the kinds of changes that are possible in the brain. From the earliest reports that new brain cells actually grow in specific brain regions of birds as they learn new songs each spring to exploratory work with individuals with motor, sensory and cognitive deficits, it is a rapidly growing field. Recently, it has been shown that the brain can change in response to an animal s life experiences. For example, some researchers separated rats into two groups. The first group was placed in what was termed an impoverished environment. This was essentially a normal cage, with the rat placed alone. The other group of rats was placed in what was termed an enriched environment. This environment had rats housed together, with toys and exercise wheels. The rats in the enriched environment had heavier brains, higher levels of some brain neurotransmitters, more nerve cell connections, and increased neuronal branching and these rats performed better on learning tasks. Right now we are only beginning to understand how we can work to maximize increases in plasticity after brain injury. After many studies, it began to look like exercise in the enriched environments was a big part of creating these brain changes; however, brain changes are specific. Thus, animals trained to use a specific paw to press a bar for food showed greater cortical representation of that paw. Likewise, animals trained to use visual cues in a maze show greater representation of visual areas. So exercise, while extremely useful, is not the answer alone. But you don t need to grow new nerve cells to see the effects of experience on the brain. When you spend a lot of time doing something, the brain starts to devote more area to that task. This is called reorganization. Reorganization can occur in all sensory modalities as a result of experience. For example, there is a certain amount of the cortex of the brain that controls each finger. If a monkey is trained to use a particular finger for a task, the amount of brain cortex used for that finger becomes enlarged. In humans, there has been a demonstrated increase in the representation of the left hand in violin players. In addition, practice with a cognitive task has been demonstrated to lead to reorganization of the brain. For example, when people were required to think of a noun when given a verb, the brain areas that were activated changed with practice. One of the most interesting studies of the effects of practice is the series of studies done on London taxi drivers. Learning to navigate in London as a taxi driver requires very complicated spatial skills. It turns out that taxi drivers have larger areas of the brain required for navigation than other people. These areas also increase in size according to years spent as a taxi driver. These principles have only recently been applied to remediation after brain injury. A very promising approach has been constraint-induced therapy. It seems that just working on a task that requires new learning leads to new neurons being generated by stem cells. Moreover, adult brains can grow new cells in the hippocampus and these new nerve cells are functional. Constraint-induced therapy has been used with success in people with stroke, brain injury, spinal cord injury, and hip replacement mostly with people who have muscle paralysis or weakness on one arm. The 6

9 person puts their fully functional arm in a sling or mitt so that he or she is forced to use the impaired arm. By doing so in a structured way over a long period of time, the impaired arm improves in function and brain reorganization is observed. More recently the same principle has been applied to remediation of language after a stroke, when those with trouble using language were placed in a room with a microphone so that they could not use any form of facial expression or gesture to get their ideas across. By practicing this way over time, they improved in their language functions. Other studies have suggested that cognitive rehabilitation techniques themselves may cause brain reorganization. This has been especially promising in approaches aimed at rehabilitating attention deficits after brain injury, and early work has suggested that some remediation techniques might help children with dyslexia. Furthermore, it may be that what you do each day can help keep your mental processes sharp. For example, in a series of studies with nuns who all live together, share the same environment, food, etc., they compared nuns who stay mentally active through reading, writing, doing crossword puzzles and those who did not and found that the nuns who were mentally active had much lower rates of dementia as they got older. Right now we are only beginning to understand how we can work to maximize increases in plasticity after brain injury. We know that repeated practice helps strengthen skills and functions. Of course, some plasticity changes reflect compensation while others reflect recovery, so treatment must be specifically designed with one or the other in mind. In other words, in some cases the plasticity is one of an intact cortical region taking on the tasks once mediated by the damaged region, while in other cases, it is now suggested that damaged regions can actually recover and resume previous functions. So the first lesson to be learned is use it or lose it! Keep your brain active and engaged. Read, play chess, do puzzles whatever you enjoy. Keep your environment as stimulating as you can. And remember, whatever task you spend a lot of time doing is giving your brain the message that this is the most important task and other functions will start to receive less brain area, so don t spend all day just watching television. Be sure your brain knows that thinking, problem-solving, reading and writing are all important! The second lesson? Since exercise seems to be important to making brain changes possible, get regular exercise to the extent that you are able! Further Reading Kolb, B. Whishaw; I.Q. Brain Plasticity and Behavior; Annual Review of Psychology, 1998: 49; Mark, V. W.; Taub, E.; Morris, D.M; Neuralplasticity and Constraint-Induced Movement Therapy; Europa Medicophysica, 2006: 42; Maguire, E.; Gadian, D.; Johnsrude, I.; Good, C. (2000); Navigation-Related Structural Change in the Hippocampi of Taxi Drivers; Proceedings of the National Academy of Sciences, 97 (8), Maher, L.M.; Kendall, D.; Swearengin, J.A.; Rodriguez, A.; Leon, S.A.; Pingel, K.; Holland, A.; Rothi, L.J.G; A Pilot Study of Use-Dependent Learning in the Context of Constraint-Induced Language Therapy; Journal of the International Neuropsychological Society, 2006: 12, Temple, E.; Deutsch, G.; Poldrack, R.; Miller, S.; Tallal, P.; Merzenich, M.; et al; Neural Deficits in Children with Dyslexia Ameliorated by Behavioral Remediation: Evidence from MRI. PNAS 2000: 100(5); Robertson, I. H.; Murre, J. J.; Rehabilitation of Brain Damage: Brain Plasticity and Principles of Guided Recovery; Psychological Bulletin, 1999: 125(5); Snowdon, D. (2002); Aging with Grace: What the Nun Study Teaches Us About Leading Longer, Healthier and More Meaningful Lives. Random House, NY. About the Author Sarah A. Raskin, PhD, is a Board Certified Clinical Neuropsychologist and Professor of Psychology and Neuroscience at Trinity College in Hartford, Connecticut. She has published numerous articles investigating neuropsychological functions and cognitive rehabilitation for a variety of disorders, including brain injury. She co-authored the Memory for Intentions Test (MIST) published by Psychological Assessment Resources. She is co-author with Catherine Mateer of Neuropsychological Management of Mild Traumatic Brain Injury, published by Oxford University Press, as well as editor of Neuroplasticity and Rehabilitation, published by Guilford Press. 7

10 Evaluating an Attorney s Expertise by Paul Slager, Esq. I n recent years, there has been steadily increasing awareness and understanding of brain injury and its consequences by health care providers and the public. Unfortunately, as is often the case, the legal profession has lagged behind the medical sciences in this area. For the attorney representing a brain injury survivor, understanding the subtle aspects of brain injury can be crucial to assessing a client s individual needs and, if the matter involves a court case, in effectively presenting the survivor s strongest possible case. To effectively represent a brain injury survivor, an attorney also must be knowledgeable about methods of evaluation and treatment of brain injury, including recent developments in radiology and other neuroscience fields. Unlike in the medical sciences, however, there is no formal specialization for attorneys in brain injury or neuro-law to demonstrate an attorney s competence to effectively represent brain injury clients. Choosing an attorney would be easier if attorneys were labeled as specialists by a credible authority. No such formal specialty exists, so clients must find other ways to assess a potential attorney. Of course, the lack of a recognized neuro-law specialty makes it difficult for injured consumers and their families to assess whether an attorney is qualified to handle the complex issues they face. Because it is so critical for brain injury survivors to be represented by wellinformed attorneys attuned to the special needs of the brain injury survivor, a brain injury survivor must be an educated consumer. Precisely what to look for depends on the reasons help is needed. Disability Law Many brain injury survivors require assistance in an area of law practice often referred to as disability law or benefits law. People who require assistance obtaining federal, state or private health insurance benefits, or in creating estate plans to address difficult aspects of their disabilities, might need the assistance of this kind of attorney. Disability law is a broad and complicated practice area that often involves financial and disabilities planning, drafting of trusts, including special needs trusts, and familiarity with complicated aspects of state and federal benefits, including Medicare, Medicaid and other disability benefits. Although there is no formal disability law specialty, any attorney under consideration to help with these kinds of needs should have special knowledge and experience in this complex practice area. Disability law is a broad and complicated practice area that often involves financial and disabilities planning, trusts, and familiarity with complicated aspects of state and federal benefits. This level of expertise can be evidenced in a number of ways, including membership in professional organizations such as the Academy of Special Needs Planners and Center for Medicare Advocacy, which are devoted to educating members on related subjects and new developments in the law. Participation in the Connecticut Bar Association Estates and Probates Section or Elder Law Section, both of which focus on 8

11 Connecticut probate law issues and planning, also demonstrates an attorney s commitment to staying up to date on important developments in the area. Attorneys with special training and expertise in Medicare law can also become certified as Medicare Set-Aside Consultants. A key part of disability law in Connecticut often involves advocacy of clients with disabilities in our probate courts. In assessing a disability attorney, one must understand the attorney s ability to navigate complicated probate laws, as well as probate court procedures and hearings. Disability law is complicated, so much so that, although I have long focused much of my own practice representing brain injury survivors in court, I do not consider myself qualified to counsel clients in disability or benefits law. Litigation and Trial Law The field of litigation and trial law obviously is much broader than the field of disability law. Attorneys who practice in this area represent injured persons who seek compensation from another who is responsible for causing their injury. There is certainly no shortage of Connecticut attorneys who practice litigation and trial law. The number of attorneys who understand the nuances of representing brain injury survivors in court, however, remains disappointingly small. As in the field of disability law, there is no recognized brain injury law specialization that distinguishes qualified attorneys, so a close look at an attorney s experience and background is critical. To effectively represent a brain injury survivor in a lawsuit, an attorney must have a sophisticated understanding of how brain injuries happen. This involves knowledge of engineering principles involving motion, injury dynamics and biomechanics. Sometimes serious injuries result from incidents that do not seem terribly traumatic at first glance, so convincing a judge or jury that a serious brain injury resulted might seem a tall order. Understanding how the brain reacts to certain forces and can become injured is crucial to an attorney s success as an advocate for a brain injury survivor. Equally important, an attorney representing a brain injury survivor should recognize the wide variety of symptoms of brain injury, including memory loss, cognitive problems, balance and depth perception issues, personality alteration, mood disorders and a host of other problems. Many attorneys do not understand fully the nature and extent of problems that can result from brain injuries. Without this understanding, attorneys may not ensure that their clients are properly evaluated, which, in turn, can lead to smaller recoveries that do not reflect the full extent of the injury. Finally, as with committed attorneys practicing disability law, attorneys who devote a significant part of their work to representing brain injury survivors in lawsuits should be expected to stay current on important scientific and legal developments through active participation in organizations devoted to brain injury education and awareness such as the Brain Injury Alliance of Connecticut or other state brain injury associations or alliances. Another important group devoted to enhancing scientific and legal knowledge of attorneys who actively represent brain injury survivors is the American Association for Justice Traumatic Brain Injury Litigation Group. Successful representation of brain injury survivors depends on familiarity not only with key legal principles involved, but with the scientific study of brain injury, its diagnosis and its consequences. About the Author Paul Slager is a partner with Silver Golub & Teitell LLP in Stamford ( and represents brain injury survivors in courts across Connecticut. He is the former President of the Board of Directors of the Brain Injury Alliance of Connecticut and continues to serve as its Vice President. He can be reached at pslager@sgtlaw.com or

12 Research Spotlight Chronic Traumatic Encephalopathy (CTE) Chris Nowinski Welcome to Brainwaves new research feature. In each volume, a research program or study will be highlighted. We recently had the opportunity to discuss the work of the Center for the Study of Traumatic Encephalopathy (CSTE) with one of its four directors, Chris Nowinski. What is the CSTE? The Center for the Study of Traumatic Encephalopathy (CSTE) was created in 2008 as a collaborative venture between Boston University School of Medicine and Sports Legacy Institute (SLI). The CSTE is an independent academic research center located at Boston University School of Medicine. The CSTE collaborates with other institutions, partners, and academic researchers to expand our understanding of CTE. The CSTE is comprised of multiple facilities including, the Clinical Research Program located at Boston University School of Medicine, the Alzheimer s Disease Center also located at BU, and the VA Brain Bank located in Bedford, MA. The CSTE has 4 Co-Directors: Chris Nowinski, Dr. Robert Stern, Dr. Ann McKee, and Dr. Robert Cantu. The Center also has a staff of research assistants, coordinators, and administrative staff. What is CTE? Chronic Traumatic Encephalopathy (CTE) is a progressive degenerative disease of the brain found in athletes (and others) with a history of repetitive brain trauma, including symptomatic concussions as well as asymptomatic subconcussive hits to the head. CTE has been known to affect boxers since the 1920s. However, recent reports have been published of neuropathologically confirmed CTE in retired professional football players and other athletes who have a history of repetitive brain trauma. This trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau. Symptoms can begin months, years, or even decades after the last brain trauma or end of active athletic involvement. The brain degeneration is associated with memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, and, eventually, progressive dementia. How did you get involved? I developed post-concussion syndrome as an entertainer with WWE. I was lucky to find Dr. Robert Cantu, a world renowned neurosurgeon, who helped me better understand the effects of repetitive head trauma in athletes. I wanted the world to know what he did, so I wrote the book Head Games: Football s Concussion Crises in 2006, in which I compiled what I learned from Dr. Cantu and my own investigative research. The book became an awareness campaign which was formalized in 2007 when Dr. Cantu and I co-founded the non-profit Sports Legacy Institute. We soon partnered with Boston University School of Medicine to create the Center for the Study of Traumatic Encephalopathy, linking up with Dr. Ann McKee and Dr. Robert Stern to lead new CTE research programs. What kind of research is being conducted at the facility? The CSTE is currently focused on multiple interconnected research endeavors. VA CSTE Brain Bank, where CSTE neuropathologists study brain and spinal cord tissue of former athletes to better understand the cause, progression, and characteristics of the disease. Brain Donation Registry, consisting of current and former athletes and military personnel who wish to donate their brain and spinal cord to the BU CSTE after death. Clinical Studies where the CSTE conducts and supports research designed to identify genetic and environmental risk factors, diagnostic tests, treatment, and more. Two studies that are ongoing are as follows: LEGEND (Longitudinal Examination to Gather Evidence of Neurodegenerative Disease) 10

13 Participants in the LEGEND study take part in yearly telephone interviews as well as yearly online questionnaires. They also have the opportunity to provide a saliva sample for genetic testing. Both those with and without a history of concussions can participate in the LEGEND study. DETECT (Diagnosing and Evaluating Traumatic Encephalopathy Using Clinical Tests) This study is the first research project on CTE ever funded by the National Institutes of Health (NIH), with support from the National Institute of Neurologic Diseases and Stroke (NINDS), the National Institute on Aging (NIA), and the National Institute of Child Health and Human Development (NICHD). The ultimate goal of this study is to develop methods of diagnosing CTE during life through the use of a variety of tests, including MRI scans (such as diffusion tensor imaging), MRS scans (also known as a virtual biopsy ), blood tests, and measures of proteins in spinal fluid. Participants will also undergo neurological, psychiatric, and cognitive assessments, as well as genetic testing. The study will include 150 former NFL players (ages 40-69) and 50 same-age control athletes from non-contact sports. Our publications can be reviewed here: Will there ever be a time when CTE can be diagnosed in living persons? We hope through our studies that there will be a time in the future where we can diagnose CTE in living persons but at this time there is no way to diagnose CTE until after someone has died. Are there established protocols to treat CTE if suspected? Unfortunately no. Right now we can only treat symptoms, and there is little good data and no guidelines on what works and what does not. What developments in the field might occur in the next ten years? The next ten years will be very exciting. Our understanding of CTE will have advanced considerably, and as effective lab models of CTE proliferate we may understand how and why CTE starts. We will have a better understanding of genetic and environmental risk factors. I anticipate that we will have a way to diagnose CTE in living people, as well as have multiple ongoing treatment studies, or maybe even effective disease modifying treatment! What can we do to prevent young athletes from developing CTE? CSTE, through founding partner Sports Legacy Institute, is committed to protecting the brains of future generations through prevention and education. CSTE research informs SLI programs designed to reduce brain trauma in sports. We believe that education and policy change is the key to helping prevent problems for young athletes now and in the future. What would you say to the medical professionals who say the research about CTE is inconclusive and that the media is sensationalizing the diagnosis? I can t disagree with the perspective that the media sensationalizes the issue. That s the nature of the media. We ve used the media effectively to raise awareness of CTE and spark tremendous reform in sports, and we have worked with reporters who reported a balanced perspective like Alan Schwarz at the New York Times and Joe Perskie and Bernie Goldberg at HBO Real Sports. Both groups won major journalism awards for their work. Regarding the concept that CTE research is inconclusive, it depends on what you are calling inconclusive. The nuances of the disease are mostly unknown, but few people contend that CTE isn t a real pathological diagnosis, that the only known cause is trauma in humans, and that our colleagues have established that trauma alone causes CTE in a mouse model. Personally, I believe that before the media took notice of this issue in 2007, the case had already been made that trauma can cause a degenerative brain disease we once called punch drunk and dementia pugilistica. While we are still in the early stages of understanding CTE, it is important to note that the brain tissue of 18 out of 19 deceased former NFL players who donated their brains for research have been positive for CTE. No matter how biased you believe that sample is, I hope people are alarmed. I am. 11

14 Continued from page 3 Brain Injury Alliance of Connecticut. The program s focus on systems integration assures person-centered and strength-based treatment planning, and strengthens veterans ability to access services in the communities where they live and work. Although services are targeted to veterans newly returned from the wars in Afghanistan and Iraq, all veterans are eligible. Connecticut has a successful and nationally recognized history of providing jail diversion services to citizens experiencing mental health problems. For well over a decade, DMHAS along with its partners in law enforcement, the Judicial Division, the Department of Correction and the Office of Probation has worked to encourage the election of treatment over incarceration whenever possible for persons with mental illness. We are pleased that newly returned veterans are now afforded the same attention and support. With a robust military and veteran presence at the Naval Base in Groton, the Army National Guard in Niantic and East Lyme, the United States Coast Guard Academy in New London, the Norwich Vet Center and the VA s busiest community-based outpatient clinic in New London, Connecticut s southeast region was chosen to pilot the new Veterans Diversion Program. The program began providing services in the Norwich and New London Courts in October 2009 and in 2010 services were expanded to the Danielson Court. Starting in May 2012, veterans diversion and trauma recovery services that are now well-established in the pilot area will be introduced in the Middlesex Judicial District. Tom s story is a common one, but his chances for a positive outcome are greater because of the implementation of this program. Tom can take his supervisor s advice and seek out counseling options that exist in his own community. The Veterans Diversion and Trauma Recovery Program has provided Tom with a degree of autonomy in choosing care that he deserves, given the sacrifices he made for our country. References 1. Tanielia, T. and Jaycox, L.H., et al, Invisible Wounds of War: Psychological and Cognitive Injuries, Their Consequences, and Services to Assist Recovery. RAND Center for Military Health Policy Research, RAND Corporation. April Milliken, C.S.; Auchterlonie, J.; Hoge, C.W.; Longitudinal Assessment of Mental Health Problems Among Active and Reserve Component Soldiers Returning From the Iraq War. JAMA (Nov 14); Vol 298, No Hoge, C.W., et al; Mental Health Problems, Use of Mental Health Services, and Attrition From Military Service After Returning From Deployment to Iraq or Afghanistan. JAMA (March 1); Vol 295, No Hoge, C.W., et al; Combat Duty in Iraq and Afghanistan, Mental Health Problems, and Barriers to Care. NEJM (July 1); Vol 351:13-22, No Hoge, C.W.; The Paradox of PTSD, VVA Veteran, Vietnam Veterans of America. Sept/Oct Jacobson, I.G. and Ryan, M.A.K., et al; Alcohol Use and Alcohol-Related Problems Before and After Military Combat Deployment. JAMA (August 13); Vol 300, No Kristof, Nicholas; Veterans and Brain Disease. The New York Times. April 25, com/2012/04/26/opinion/kristof-veterans-and-braindisease.html?_r=1# About the Authors Chris Burke has been actively involved in the field of social work for the past 26 years. He is team leader for the pilot area Veterans Diversion and Trauma Recovery Program at Southeastern Mental Health Authority and is a licensed alcohol/drug counselor and clinical social worker. Jim Tackett has worked in the field of veterans affairs for the past 28 years. He currently serves as Director of Veterans Services with the CT Department of Mental Health & Addiction Services (DMHAS). Jim also serves as Project Director for the CT Jail Diversion & Trauma Recovery Services for Veterans Program. In addition, he directs both the CT Military Support Program (MSP) and the National Guard Embedded Clinician Program. 12

15 RESOURCES ASSISTIVE TECHNOLOGY (See Resources on page 5) BASIC NEEDS & BENEFITS Community Action Agencies (CAA): INFOLINE at 211 to find a local office; programs include job training, education, energy assistance, housing eviction prevention program, mental health, food commodities, Meals on Wheels, criminal justice intervention. Department of Social Services (DSS): or ; meets basic needs of food, shelter, economic support and health care. HUSKY Healthcare: ; State of Connecticut s public health coverage program. Partnership for Prescription Assistance (PPA): ; Social Security Administration (SSA): ; if one is unable to work for a year or more as a direct result of disability then he/she may qualify for benefits through the SSA. BRAIN INJURY WEBSITES Brainline: Brainlinekids: Center for Disease Control and Prevention (CDC): CT Concussion Task Force: TBI Model Systems: DISABILITY RIGHTS ADA Coalition of CT (ADACC): ; formed to promote compliance with Americans with Disabilities Act (ADA). Commission on Human Rights and Opportunities (CHRO): ; Connecticut s chief civil rights law enforcement agency. CHRO receives and investigates complaints alleging discrimination. Department of Public Health (DPH): ; regulates health care providers. Long-term Care Ombudsman Program (LTCOP): or ; protects and promotes the rights and quality of life for residents of skilled nursing homes. Office of Protection and Advocacy for Persons with Disabilities (OPA): or ; provides free advocacy assistance to individuals with traumatic brain injury. EDUCATION Bureau of Special Education: ; Wrightslaw: information about special education law, education law, and advocacy for children with disabilities. A free online subscription is available for parents, educators, advocates, and attorneys. EMPLOYMENT Bureau of Rehabilitation Services (BRS): ; helps people with disabilities prepare for, obtain, and maintain employment. Job Accommodation Network: ; leading source of free, confidential, and practical information on workforce accommodations for the employee and employer. HOUSING U.S. Department of Housing & Urban Development (HUD): ; mission is to increase access to affordable housing. Call to obtain copy a copy of Looking for HUD-Assisted Rental Housing in Connecticut. INFORMATION & RESOURCES Aging and Disability Resource Centers (ADRC): ; information hub linking older adults, persons living with disabilities and caregivers in Connecticut to the services and supports they seek; services include benefit screening, options counseling, and care transitions. INFOLINE: 2-1-1; Connecticut s free statewide information and referral service. Office of the Healthcare Advocate (OHA): ; assists Connecticut residents with health insurance issues by providing information on general questions, referral process, and appeal/grievance procedures. LEGAL Statewide Legal Services of CT (SLS): ; telephone hotline helping low-income callers with legal problems. MENTAL HEALTH Department of Mental Health & Addiction Services (DMHAS): ; National Alliance on Mental Illness (NAMI): ; MOBILITY SERVICES Kennedy Center Travel Training Program: , x265; teaches people with disabilities how to properly and safely use the local bus and rail system on a one-to-one basis throughout Connecticut. There is no cost for the program. OTHER DISABILITY SERVICES CT Association of Centers for Independent Living (CACIL): ; provides four core services: peer support, information and referral, individual and systems advocacy, independent living skills training. State of CT Board of Education and Services for the Blind (BESB): or ; assists people who are blind in acquiring the skills and support services necessary to be independent. VETERANS (See Resources on page 3) 13

16 The law firm of Silver Golub & Teitell LLP is pleased to sponsor this issue of Brainwaves in our ongoing effort to support both the Brain Injury Alliance of Connecticut and those whose lives have been forever changed by the experience of a brain injury. REPRESENTING BRAIN INJURY SURVIVORS AND THEIR FAMILIES THROUGHOUT CONNECTICUT SILVER GOLUB & TEITELL LLP 184 Atlantic Street, Stamford, Connecticut For more information, contact Paul A. Slager, Esq. SILVER GOLUB & TEITELL LLP