THE N GG N December 2015

Vol. 1 Issue

Brain Injury Alliance of Arizona Newsletter

Rehab Without Walls Farmers Market:

Caring Crafts Ten-year-old Joe Belkin looks forward to the Rehab Without Walls Farmers Market every year. For Joe, it’s a chance to make and sell crafts for a good cause. “I guess I just try to help out,” Joe said. “I love to raise money for a good cause, an important cause.”

In this Issue 

How TBI survivor Austin Duncan hopes to use social science to help other brain injury survivors

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Caregiver’s Perspective: Interview with Derrick Grant

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CTE: What do we really know?

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Interview with survivor: Jessica Taylor Q & A

Many of the crafts sold at the event are made by survivors themselves, often as part of their therapy or rehabilitation program. Other clients help plan the event or man booths.

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Rehab Ready: Nueropsycholoist Dr. Alison Reuter

“What we think is so great about the event is it brings the brain and spinal cord injury community together,” Alison said. Everyone participates in the market, Alison added, including “people who work and serve people with brain and spinal cord injury and our patients and families. It’s an event for, by and with people with brain injury.”

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ADA Matters: A young wrestler’s quest for inclusion

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How one couple’s wedding supported BIAAZ

Ten-year-old Joe Belkin has made crafts to sell at the Rehab Without Wall Farmer’s Market for the past three years.

He said he feels a lot of empathy for those who benefit from the event. “I have sensitive feelings, I would say,” Joe said.

The annual farmer’s market, a fundraiser for brain and spinal cord injury programs, isn’t just about raising money, however, as Joe’s mom, Alison Belkin, pointed out. Alison, who is also the AZ Home and Community Program manager for Rehab Without Walls, said the facility’s clients benefit from helping with all the preparation that goes into making the farmer’s market happen.

That involvement often bolsters survivors’ rehabilitation programs.

“We get really excited about the income and the money we raise and at the same time we remind ourselves that it’s as much about the sense of community and the skill building rehab part of it.” Continued on page 3 ... The Brain Injury Alliance of Arizona (BIAAZ) is a nonprofit organization dedicated to preventing brain injuries and to improving the lives of individuals with brain injuries through prevention, education, information, and community support. 1

From Executive Director Carrie Collins-Fadell December is a special time of year. It’s when the holidays encourage us to slow down and express gratitude for all of the simple things in life. It’s also when we look back with pride on the year’s accomplishments while we recharge and gear up to tackle challenges the New Year will bring. There is no doubt 2015 was a great year for the Brain Injury Alliance of Arizona and I want to thank you for being a part of our success. This edition of The Noggin examines the many different facets of the brain injury community. Derrick Grant continues our series on High Profile Care Partners. Derrick’s wife, Kim Covington, was seriously injured in a near-fatal accident that thrust Derrick into the role of care partner while caring for the couple’s young family. Our newest Advisory Council member, Austin, gives us a look at life as a high functioning brain injury survivor (and graduate student) and discusses his plans to work with the Brain Injury Alliance of Arizona in 2016.

For a wonderful holiday story of hope and inspiration, check out ADA Matters, where you’ll learn about Braham, a 9-year-old boy who wasn’t about to let his disability get in the way of his dream of being on the wrestling team. As our November third annual conference for professionals showed, the Brain Injury Alliance of Arizona has some exceptionally talented and passionate professionals in their network. Our United States Brain Injury Alliance representative Tamara Valovich is no exception. In this issue she gives us a look at Chronic Traumatic Encephalopathy, or CTE, which will no doubt be on everyone’s radar after the Christmas Day release of Will Smith’s new movie, Concussion. Finally, I want to thank you for being a part of the Brain Injury Alliance of Arizona family and a key partner in our continued success. With your help we will continue to live our mission in 2016.

Carrie Collins-Fadell 2

Continued from page 1... Joe has been making crafts to sell at the farmer’s market for the past three years. This year, he sold sun catchers and outdoor Christmas ornaments made of bird seeds. In previous years, Joe made custom perler bead crafts and rainbow loom rings and bracelets. Joe was first introduced to the annual fundraiser by his mom, who asked Joe and his older brother if they wanted to help out. “I just knew that I wanted the boys to be exposed to people with disabilities and learn how to be philanthropic and think beyond themselves,” Alison said. “I thought it’d be a really cool opportunity to do that.” Making the crafts allows Alison, who enjoys arts and crafts, to be creative while spending quality time with her sons. “I think it’s a nice way to spend time with the boys and do something that’s active,” Alison said. After his first year at the market, Joe was hooked. “He has the option every year and he says yes, even if he’s worried about having too much homework to catch up on,” Alison said. Joe is quick to point out his mom doesn’t make him go, however. “I wasn’t forced to do it, I chose to do it,” Joe is quick to chime in. “I would rather raise $100 than go to school because it’s a little more important.”

That attitude doesn’t surprise Joe’s mom at all. “I think that fits Joe’s personality,” Alison said. “He’s a natural salesman, he’s very charismatic. And, as he said, he’s always been empathetic and sensitive. He’s a lot more aware of doing kind things for people.” Joe is already looking forward to next year’s market, especially since this was his best year yet. He sold almost all the items he made for $100. “That’s a record for me,” Joe said.

Happy Anniversary BIAAZ wishes a belated Happy First Anniversary to Katie & Dave of Northern Arizona. Katie's brain injury happened in 2010, just 10 weeks after she & Dave began dating. Four years later, their wedding vows included gratitude for Katie's continued healing and the love that carries them through the challenges brain injury brings into a relationship. Katie & Dave took their gratitude a step further and asked their wedding guests to donate to BIAAZ in lieu of wedding gifts. Today, their generous gift is still hard at work serving brain injury survivors through BIAAZ. To include a donation to BIAAZ in your upcoming celebration, please call 888500-9165. 3

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The social side of brain injury Austin Duncan hopes his social anthropology studies will help future brain injury survivors reintegrate into the community

It was a warm day in the bustling city Luxor, Egypt on April 24, 2003. As temperatures climbed towards 95 degrees, Austin Duncan, an American graduate Fulbright Scholar studying Islamic law, stepped onto a street to cross it while showing a visiting friend and fellow Fulbright Scholar around the city.

TBI survivor University of Arizona PHD student Austin Duncan is studying medical anthropology. He hopes his research will inform future brain injury rehabilitation programs.

Austin had begun his graduate scholarship program the year before in Kuwait. But when the Iraq War broke out in 2003, U.S. State Department’s Bureau of Educational and Cultural Affairs, the agency that facilitates and funds the Fulbright Scholar Program, deemed Kuwait too dangerous for Austin to stay. Rather than return to the U.S. for the duration of the war, Austin chose to continue his studies in Egypt.

After taking just a few steps, however, the side mirror of a passing bus slammed into Austin’s skull, immediately knocking him unconscious. The driver never stopped. Determined to finish For the next six days, Austin remained unconscious. The accident itself and many of the following weeks are a blank void in Austin’s memory. He tells the story based on what he has pieced together from others’ accounts. Austin awoke once, only to slip into a semi-comatose state for the next month and a half. Egyptian physicians in two different hospitals, basing their conclusions on a CT scan that showed very little damage to Austin’s brain, predicted he would eventually wake up and fully recover. By mid-May, Austin had been transferred to a hospital in Cairo. His parents, who had flown to Egypt to help care for him, had Austin medevaced to Harborview Medical Center in Seattle, Washington near the family’s home on Bainbridge Island. An fMRI performed there revealed that, in fact, the blow had inflicted extensive damage to his brain. Austin spent the next three weeks at Harborview in the intensive care unit, or ICU. From there, he was placed into Synergos, a facility for patients stable enough to be released from the ICU but still unable to walk, clean themselves or perform other independent actions. While there, Austin turned 23-years-old, a birthday he says “I can just remember.” In late May, Austin transferred from Synergos to Harborview’s acute rehab facility, where he spent another three weeks in an intensive rehabilitation program. Finally, on July 10, 2003 Austin was released to his parents’ home to begin an eight-month long outpatient rehabilitation program. Continued on next page... 5

Continued from previous page... He finished that program in February of 2004, nearly a year after the accident, Austin’s immediate physical recovery from his brain injury was complete. His journey as a high-functioning brain injury survivor, however, had just begun. The next chapter He took several different jobs and completed his Fulbright scholarship program. In 2007, Austin decided to pursue a master’s degree in public administration. He enrolled in a three-year program that combined a year of intensive academic study with two years of service with the Peace Corps in Cameroon. He was awarded his degree in 2011. In an email, Austin wrote of “how much I attribute the ‘success’ of my rehabilitation and recovery to people other than myself.” He expressed a deep gratitude for the myriad of people who helped him achieve his post-injury success and lists among them everyone from his parents to former piano teachers and undergrad professors. He is keenly aware he was fortunate to be allowed to complete his Fulbright Scholar program two years after it began. “I'm sure I would not have done nearly as well in successfully internalizing rehab strategies if I had not had a very supportive family and rehab medicine team behind me,” Austin said.

Brain injury and society Today, Austin is pursuing a PhD in medical anthropology at the University of Arizona. He hopes to research how brain injury impacts not only brain injury survivor themselves, but also “how brain injury works in society in general.” To Austin, brain injury isn’t simply a state of being for the survivor to cope with, but rather “it’s something that is inherently social, and effects not the just brain injury survivor, but everyone around them.”

Austin hopes to research how brain injury impacts not only brain injury survivors themselves, but also “how brain injury works in society in general.”

“Bringing that angle into trying to devise policies and programs to work with brain injury survivors I think will actually, I would hope, help them more than they’ve been helped without [that perspective],” Austin said. For example, Austin believes that, at least some ways, how society reacts to brain injury can make it “into much more of a disabling condition than it otherwise would be.” Austin’s research will combine both quantitative data, such as statistics, with qualitative information such as personal narratives and anecdotal information. Ultimately, he would like to see his research used to develop rehabilitation strategies that better prepare survivors “to return to a world that is not exactly predisposed to deal with them in a positive way.” Unsurprisingly, Austin’s research focus is informed by his own experiences as a high-functioning brain injury survivor. Physically, Austin struggles with some motor control issues, double vision, trouble sleeping, occasional balance issues and ataxia, a lack of coordination on his left side. On a non-physical level, Austin also struggles with TBI fatigue, memory issues, a shortened attention span and some difficulty controlling his emotions. Frustratingly, the degree to which many of these symptoms manifest vacillates depending on his emotional state, how well-rested he is or isn’t, and a

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Continued from previous page... host of other factors. “I’m way more emotional, that’s true,” Austin said. To his fellow students and colleagues, however, Austin is a healthy young man enrolled in a challenging PhD program and naturally often assume he is normal. When he explains why and how he’s not, he’s often met with skepticism. This adds a layer of frustration to many of Austin’s daily interactions. When his fatigue hits and Austin tells colleagues he won’t be able get any work done that day, Austin said “they just assume I’m malingering or, even worse, making it up so I can get a pass.”

On some days, Austin’s challenges are more apparent, and he sometimes loses his train of thought while speaking. He said this often leads to him being treated “either like I’m drunk, which happens frequently, or like I’m an adult child that doesn’t have a lot of intellectual capacity.” “And that, in turn, causes an emotional and psychic burden for me, such that I have just a massive amount of strain put on me, pretty much at every moment of the day, which is a huge impediment in my work,” Austin said. Austin copes with his new emotional life by playing the piano – which, due to motor control issues in one hand, is both immensely rewarding and frustrating for him – meditating, listening to music and playing video games. Part of the emotional changes brought by his accident, however, includes more empathy for “anyone who is treated badly by others,” though Austen acknowledges his own understanding can be limited. “I understand that I do not and cannot fully understand other brain injury survivors' and disabled persons' situations, no one can,” Austin wrote in an email. “I have seen so many people ‘empathize’ with disabled individuals, when they could not possibly know or understand all the myriad ways that disability figures into other aspects of disabled persons' lives.” Still, Austin finds himself relating, at least on some level, to socially awkward or isolated students in the classes he teaches as part of his PhD program. “My experience really helped me empathize with anyone who is looked down on or treated badly by others,” Austin said. He is also more aware of others around him with disabilities. Recently, a disabled student at the Student Union needed a straw but couldn’t reach it. Austin helped the student, but admits he “wasn’t quite sure how much I could pass down the straw to her because I didn’t want to come across as condescending, and I know that can also be a problem.” A clear-cut mission

Austin Duncan, who will be on the Brain Injury Alliance of Arizona’s Advisory Council, with Ali Wallace, who was a keynote speaker at BIAAZ’s third annual professional conference.

One thing Austin is clear about, however, is that he wants to use both his personal experience and research on traumatic brain injury to make it easier for both survivors and their communities to navigate life post-TBI. In addition to his academic work, Austin is also a member of the Brain Injury Alliance of Arizona’s advisory council, where he hopes to use his experience in public administration and social science background to help develop programs and identify the needs of brain injury survivors. 7

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Rehab Ready Dr. Alison Reuter, neuropsychologist A brain injury survivor’s rehabilitation team often includes a neuropsychologist. Dr. Alison Reuter, a neuropsychologist with The Reuter Center for Neuropsychology and Integrative Counseling, described a neuropsychologist as “a clinical psychologist who specializes in brain and behavior relationships.” “A neuropsychologist has more specialized training, specifically in brain functioning,” Alison said.

Dr. Alison Reuter, PhD, ABPdN

Much of the specialized training takes place during a two-year post-doctoral residency program. The residency gives neuropsychologists experience in treating issues that stem from a damaged or impaired brain such as neurodevelopmental disorders, brain injury, dementia and many other conditions.

Another facet of neuropsychology that separates from the other branches of psychology is the type and level of assessment a neuropsychologist conducts. For a brain injury survivor, an assessment may include determining the survivor’s baseline language, academic and intellectual abilities, their memory, attention span and more. They also help identify some of the common executive function impairments that brain injury often incurs, such as difficulty with self-regulation or planning. Neuropsychologists also perform personality and mood assessments. These assessments can be done immediately after a brain injury, as a way to initially assess the survivor, or later down the road if the injury occurred in the more distant past. Sometimes, assessments are a way to measure a survivor’s progress during a rehabilitation program. Assessments also help identify when a brain injury survivor can return to work. A neuropsychological evaluation is not completed by filling out forms. Brain injury survivors may be asked to complete certain cognitive tasks. The results are compared with a normative sample of people the same age as the survivor. A typical assessment takes about six to eight hours but can be spread out over time to accommodate survivors who struggle with fatigue. On the less clinical side, neuropsychologists often play a large role in educating family members and survivors about brain injury and its impacts, help foster realistic expectations for recovery and formulate treatment plans for behavioral or cognitive challenges. They also offer emotional support for all the changes a brain injury brings. Education and support typically takes place during hour-long weekly or bi-weekly sessions, often with all family members or caregivers present. However, only people with written permission from the survivor will be involved in counseling or have test results shared with them. “We’re not required to involve family, but it certainly, I think, gives us better outcomes if we can get as thorough a picture of the person involved as possible,” Alison said. “But of course a person certainly has a right to just keep the information to themselves or come to counseling just by themselves.” Alison finds her work exceptionally rewarding, both personally and intellectually. She enjoys being in a helping profession and seeing her patients improve after a brain injury. Alison also enjoys often being a part of multi-disciplinary team. “It’s so interesting,” Alison said. “I love learning about the brain and how the brain effects behaviors in largely predictable ways, but [also] in such individual ways on a person-to-person basis. I really enjoy the diversity of what neuropsychologists can do.” Neuropsychologists must be licensed in the state they practice and usually have a PhD or PsyD in counseling. They have also typically completed a two-year post-doctoral residency. Board certification is optional but not mandatory. 9

Chronic Traumatic Encephalopathy: What Do We Really Know? By Tamara Valovich McLeod, PhD, ATC, FNATA Tamara McLeod is a Trustee of the United States Brain Injury Alliance, Professor and Director, of the Athletic Training Programs and Research Professor, School of Osteopathic Medicine in Arizona, A.T. Still University

There is already a significant amount of buzz about the new movie, Concussion, due to be released this December. The movie stars Will Smith as Dr. Bennet Omalu, a neuropathologist who discovers a brain disease in a deceased NFL football athlete. The condition is termed chronic traumatic encephalopathy (CTE). This condition has garnered a lot of attention in the media after the high profile deaths of former professional athletes who have been diagnosed with this disease. As a result, questions are often asked regarding participation in football and the development of CTE. Interestingly, the science behind this disease is not as far along as most people think. We do not know a lot about CTE and some in the scientific and medical communities question its existence. The purpose of this article is to provide a current understanding of what we know and do not know about CTE. What is CTE? There is no agreed upon definition for CTE. Some definitions describe CTE as occurring from repeated head trauma or repeated exposure to head impacts that do not result in concussion-like symptoms (sub-concussive impacts). While the term CTE is relatively new, a similar condition called dementia pugilistica or punch drunk Continued on next page... 10

Continued from previous page... syndrome was described in boxers as early as 1928. At that time, a pathologist named Harrison Mart land described behavior changes and movement disorders in amateur and professional fighters. After they died, he discovered multiple "concussion hemorrhages" throughout their brains that he could see with the naked eye. CTE is currently described as a neurodegenerative disease associated with repeated mild brain injury characterized by changes in behavior, mood and cognitive impairment. Standard MRI and CT scans cannot detect CTE. The brains of CTE patients also look normal on standard pathology after death. However, CTE is often diagnosed when frontal or temporal lope atrophy is noted in the brain and with a buildup of tau-positive neurofibrillary tangles (NFT), an abnormal, microscopic protein. The speculation is that repeated hits to the head, whether or not they result in concussion symptoms (sub-concussive) may lead to neuropathic changes within the brain and a clinical presentation that includes psychiatric symptoms, behavioral changes, and cognitive impairments. The individual may suffer from depression, agitation, impulsivity and aggression, along with demonstrating balance and gait abnormalities and cognitive impairments. The manifestations of this clinical presentation are not thought to be noticeable until 10-20 years after the end of the individual’s playing career.

While the exact percentage of former athletes and non-athletes who get CTE is unknown, some estimate that CTE occurs in less than 4 percent of former professional American football players.

A review by Gardner et al (2014) evaluated four published studies of CTE and identified only 20 percent of the cases were diagnosed with pure CTE neuropathy, 51.8 percent with CTE and other neuropathy, 4.7 percent with neuropathy without CTE and 23.5 percent with no neuropathy. Based on these findings, they suggest a modern definition of CTE that includes a clinical profile with cognitive and mental health problems, neuropathy that includes only neurofibrillary phosphorylated tau and TDP-43+ in the absence of other neuropathy, and the absence of any other disease or disorder that could explain the other findings. Essentially CTE is a diagnosis of exclusion made after the individual has deceased. Who gets CTE? While the exact percentage of former athletes and non-athletes who get CTE is unknown, some estimate that CTE occurs in less than 4 percent of former professional American football players. However, a diagnosis of CTE has also been found in boxers, ice-hockey players, and soccer athletes. While most of the cases in the literature are older individuals, CTE has been diagnosed in both collegiate and high school football athletes. There have been some high profile athlete suicides, after which a diagnosis of CTE was made. However, the overall death rate of former NFL players is lower than that of men in the general population. Retired NFL players are also less likely to commit suicide than the general population (less than half of the expected rate). It is also important to note that many athletes who participate in contact and collision sports do not develop CTE. Furthermore, some individuals who develop physical symptoms (e.g. headache), mood disorders, or cognitive decline did not participate in sports or suffer a significant head injury. Until additional studies are conducted we may not know the true incidence of CTE among athletes and whether it is different from the general population. Continued on next page... 11

Continued from previous page... How Can I Tell if Someone Has CTE? Currently the only way to diagnose CTE until after death, when the brain is autopsied. Neuropathologists are able to stain parts of the brain to detect the presence of tau. There is no imaging technique, clinical assessment, or blood test that can diagnose CTE at this time. How Good is the Science? To date, what we know about CTE has come from case reports and case series. These are the lowest levels of study design and are used to describe a phenomena. The studies of CTE have a small sample size and have not included brains of control subjects to allow for comparisons. Therefore, we need to be cautious in how we interpret the findings. At best we can discuss an association between subconcussive impacts and CTE. We cannot describe it in terms of cause and effect. There are some who do not feel that CTE is a separate disease, but rather associated with other neurodegenerative conditions, like Alzheimer disease. Those who question the existence of CTE as a separate disease, note that neurofibrillary tangles (NFT) are common in several neurodegenerative disorders and may also be present in older individuals without trauma. Furthermore, the argument is made that there is no established consensus to diagnose CTE, no controlled epidemiological studies, and no clinical syndrome identified that is unique to only CTE. Can CTE be prevented? Since we do not know exactly what causes CTE, we do not have a way to prevent it from occurring. However, there are several primary and secondary prevention initiatives that can make sports safer. Education of coaches and athletes regarding proper tackling technique and limiting contact can decrease head impacts and injury rates. In a study of youth football players, those leagues that followed the USA Football Head’s Up Program that teaches coaches how to instruct proper technique, along with limiting contact during practice resulted in an 85% reduction in time loss injuries and fewer head impacts during practices compared to leagues that do not use the program. Rule changes can also reduce injuries. Increasing the age until players can body check has resulted in fewer injuries in youth ice hockey. The NFL has also seen fewer concussions with the passing of several rule changes over the past few years. New rules regarding heading have just passed in youth soccer across the US and future data collection efforts will study the impact of these changes.

References Gardner A, Iverson GL, McCrory P. Chronic Traumatic Encephalopathy in sport: a systematic review. British Journal of Sports Medicine. 2014; 48: 84-90. Love S, Solomon GS. Talking with parents of high school football players about Chronic Traumatic Encephalopathy: A consice summary. A merican Journal of Sports Medicine. 2014;43(5): 1260-1264. Kerr ZY, Yeargin SW, Valovich McLeod TC, Mensch J, Hayden R, & Dompier TP. Comprehensive Coach Education Reduces Head Impact Exposure in American Youth Football. Orthopaedic Journal of Sports Medicine. Published online October 16, 2015, doi: 10.1177/2325967115610545. Kerr ZY, Yeargin S, Valovich McLeod TC, Nittoli VC, Mensch J, Dodge T, Hayden R, Dompier TP. Comprehensive coach education and practice contact restrictions result in lower injury rates in youth American football. Orthopaedic Journal of Sports Medicine. 2015; 3(7), 2325967115594578. Meehan W, Mannix R, Zafonte R, Pascual-Leone A. Chronic traumatic encephalopathy and athletes. Neurology. 2015;85:1501-2511. Randolph C. Is Chronic Traumatic Encephalopathy a real disease? Current Sports Medicine Reports. 2014;13(1): 33-37.

Should My Child Play Contact Sports? There are numerous physical, social, and psychological benefits for children and adolescents to participate in sports. Children should be encouraged to be active and involved in sports to lay the foundation for an active and healthy lifestyle. Parents should ensure that the teams and leagues in which their children are playing promote a safe sports environment. This may include having access to a licensed athletic trainer to evaluate and manage injuries, having an emergency action plan, providing concussion education to athletes and parents, instructing athletes on proper playing technique, and implementing best practices for concussion management. 12

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A M E R I C A N S WI TH D I S AB IL I TI E S A C T

ADA Matters By Milchele Stokes, ADA compliance specialist for the City of Tempe Michele Stokes, deaf/oral/lip reader, is currently the ADA Compliance Specialist for the City of Tempe. She has been in the accessibility field for over 25 years. She also serves as the CEO for Behold Charities International, a new non-profit, whose mission is to facilitate universal design in accessible affordable housing. She also has a brother who sustained a traumatic brain injury at age five. Michele is married to Bill Stokes. She has four adult children, 11 grandchildren, one great grandson, three dogs, five cats, and a dozen fish. She reports there might be a gecko or two in the house, as well.

Accessibility in Youth Sports The U.S. Department of Justice (DOJ) enforces Title III of the ADA which applies to public accommodations. Public accommodations covers just about every type of business in the nation that is not government related, including youth sports leagues and other businesses providing recreation, sports or fitness programs for youth. This also provides ADA coverage for youth who have traumatic brain injuries who may need policy modifications to support inclusion and encourage participation. Just this past month a settlement was highlighted on the DOJ website that deserves mention due to its support for policy modification. The settlement information highlights that ADA matters in all areas of life. From oldest to youngest, at work or play… from the swimming pool to the golf course to the gym, the ADA matters. Nine-year-old Brahm has bone dysplasia, also known as dwarfism, which makes him smaller and lighter than other children his age. When he was seven years old and weighed approximately 34 pounds, Brahm joined a wrestling club in his hometown of Colorado Springs, Colorado. His doctor had cleared him to wrestle children of a similar weight. The wrestling tournaments were run by Pikes Peak Wrestling League (PPWL), a youth wrestling league that serves approximately 4,000 children across the state of Colorado. Arizona has similar wrestling leagues which serve even greater numbers of youth, as well. Initially, for the regular season tournaments, PPWL allowed Brahm to wrestle in the six and under age division, even though he was seven years old, so that he could wrestle with children of a similar weight. Continued on next page... 14

Continued from previous page... Brahm’s parents explained that Brahm has a disability, dwarfism, and it would be unsafe for him to wrestle children in the eight and under division weighing up to 45 pounds. When it came to the State Wrestling Championship, however, PPWL refused to allow Brahm to compete in the six and under division. Consequently, Brahm left the tournament and did not compete. The United States recently reached a settlement agreement with PPWL that will ensure that, in the future, children with disabilities like Brahm will not be excluded from PPWL’s events. Under the agreement, PPWL will adopt and publicize a disability nondiscrimination policy, including procedures for handling requests to modify policies for wrestlers Brahm at a wrestling tournament. with disabilities. PPWL will also train employees on ADA requirements and invite coaches affiliated with PPWL and USA Wrestling Directors to attend this training, free of charge. In addition, PPWL will pay compensatory damages to Brahm and report to the department on its compliance with the agreement. Title III of the ADA requires public accommodations, including youth sports leagues like PPWL, to reasonably modify their policies, practices or procedures, when such modifications are necessary to afford their goods, services, facilities, privileges, advantages or accommodations to individuals with disabilities and when such modifications would not fundamentally alter the nature of their goods, services, facilities, privileges, advantages or accommodations. For more information about the ADA, call the department’s toll-free ADA Information Line at 800-5140301 (TDD 800-514-0383) or access the ADA website at www.ada.gov. ADA complaints may be filed by email to [email protected] The full account of this settlement can be found here or you can cut-and-past http://www.justice.gov/ opa/blog/celebrating-access-today-enforcing-accessibility-youth-sports into your browser.

Need support? BIAAZ facilitates several survivor and caregiver support groups that meet monthly throughout the Valley. Check out our Facebook page at www.facebook.com/BrainInjuryAllianceAZ for more information. Or, ask to subscribe to our e-Blasts by emailing [email protected]. 15

Interview with a survivor: Jessica Elizabeth Taylor Jessica E. Taylor is the author of the books The Journey Back and From Tragedy to Triumph: Journey Back from the Edge, both chronicling her journey as a brain injury survivor. She took time last month to answer questions about her book and brain injury journey. Tell us about yourself. Where are you originally from and what brought you to Arizona? I was born in Ireland to a show business family and started life as a professional actress. In more recent years I spent some time in Ireland where I set up a brain injury awareness campaign. I returned to North America to be with my two daughters in 2006 and set up my awareness program again. How and when did you become a part of the brain injury community? I had a near-fatal brain injury in 1969 when out on business for my Merle Norman cosmetic studio. I fell down an unlit flight of stairs head first…my head then struck a 12” steel plated door. Why did you decide to write a book about your experience? Did anything surprise you about writing it? What do you hope people will get out of your book? I used to tell some friends about certain things that happened to me during my self-rehab years and they encouraged me to write my story. My book was written so that other survivors would not feel so alone and gain wisdom from it. It is helping them to have “hope and inspiration” and has thankfully “saved lives”. All this has made up for the ordeal and pain while writing about the dramatic experiences and suffering involved in brain injury in general! Where can we find your book? On Amazon. A link to Amazon is also on the home page of my website. There is also a link there for people to get in touch with me. A synopsis of my story is also on the home page. I self-published when my would-be-publisher went bankrupt, so the book is not in shops. Hopefully, one day it will get conventionally published as there is “film interest” at present. What have you learned about brain injury that you would like others to know? I tell survivors to stay as positive as possible and never give up the fight to get to a better state of health. As many do, I too suffered severe depression and was unable to work for many years. To combat all that, I used daily mantras. “Accept the challenge. Refuse to fail” and “A quitter never wins; a winner Continued on next page... 16

Continued from previous page…

never quits” I also meditated daily. Determined not to give up, I went to libraries and studied a subject matter for 14+ years. I interviewed many people and read hundreds of books on the subject. My investi gation helped enlighten me as well as heal. My life has been greatly enhanced as a result. I firmly believe that the intensive study activated dormant brain neurons. What I discovered needs to be shared in order to spiritually enlighten and heal others. When in book format, the story will be entitled Jewels in the Mud. which I hope to get conventionally published.

What are your hobbies and interests? I gave presentations at head injury conferences in several counties in Canada and the U.S. for several years until the funds ran out. I conducted brain injury awareness picnics at a local park for several years.

Jessica Taylor as a 30year old. .

Recently, most of my daily time is spent on the internet, enhancing my recently completed manuscript, corresponding with survivors, etc. I believe that keeping busy helps my brain neurons! I also take protein powder as I do not eat red meat. I love inspirational movies, true stories and comedy films. I take walks by the beach, go to a couple of local pubs with friends where music is played by a live band at least once a month.

Thank You The Brain Injury Alliance of Arizona is deeply grate to Cheryl Senkfor, founder of Woven Angel, a jewelry shop where Cheryl, a brain injury survivor herself, sells hand-crafted woven jewelry. Senkfor generously presented the BIAAZ with a $900 donation at our third annual conference for professionals.

From right to left: BIAAZ Board member Sharon Phillips, Board Vice President Tom Nielsen, Miss Oregon 2015 Ali Wallace, Board President Robert Djergaian, Treasurer Sean Badding and Cheryl Senkfor, owner of Woven Angel.

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High-Profile Care Partners

Kim Covington and her husband Derrick Grant. Grant found himself a caregiver after Covington’s 2013 car accident in which she sustained a brain injury.

This month we continue to spotlight high profile care partners. Derrick Hale recently took time for a Q& A session with our Executive Director, Carrie Collins-Fadell. Derrick gives the male caregiver perspective after he was thrust into the role overnight when his wife, newscaster Kim Covington, was in a near-fatal car accident. The holidays can be extremely stressful for caregivers and we are excited to share Derrick’s story.

Q: That day in September must have started out like any other. What do you remember about it? I remember very little about the day until I noticed a voicemail on my mobile phone. Q: How did you hear that Kim was involved in a very serious accident? I got a notification on my mobile phone of a voicemail. It was odd because I never heard the original call come in and I believe his was because we had very bad mobile coverage in the building where my office was. The voicemail was from a woman at the hospital that said I needed to call her back as my wife was in the Trauma Center. Q: Kim’s injuries were so serious that first responders assumed she was already gone. Was there a watershed moment when you knew in your heart that things were going to be alright and you let yourself relax a little? Continued on next page... 18

Continued from previous page... No. It would be months before I really felt that Kim would be okay and it was an evolution rather than a revolution after slow but steady progress. Q: How did you manage being a medical advocate and care partner for Kim while also working and running a household where children, pets, and family members needed your attention as well? I had amazing family, community, and medical care support. I have no idea how I would have managed without all who contributed to our family at that time. Q: Like anyone who has been by the side of a loved one during recovery from a major accident, you likely had both positive and negative experiences. What was one of the most unexpected thing for you? Frankly, the outpouring of love and support for Kim. I believe it’s because of the joy and love she so freely gives out and always giving of herself to others in need. Q: Since Kim is a well-known and beloved public figure in the valley, the public was interested and invested in her recovery. Did her recovery in the public eye add any challenges or was it a positive? Privacy is a moving target for public figure. I am a very private person, so there were times when the public (and employer) was asking for information which we were not all that comfortable discussing at the time, mostly because we were not even sure what was happening with the progress of her recovery sometimes. Q: Caregivers and men are notorious for putting themselves last on their own priority list when it comes to self-care. Is there anything that you did for yourself during his intense period of recovery that kept you grounded, refueled, or going so that you could be there for Kim and your family? I never really considered my own needs at that time. My priority was to Kim and our kids. Yes, there were times I wondered why us, why me, but those thoughts were quickly shelved for how can I help her get better. Q: What advice would you give to other men who have suddenly assumed a temporary role as caregiver to a parent, spouse or child? Look for support, it would be very difficult to try and manage alone. Family, church, community, and medical providers are all good sources to help with the difficult situation you may in.

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Q: Being a caregiver to your young wife was certainly unexpected. Have you ever experienced the role of a caregiver before? Never long term as in this case. Q: Being a caregiver, particularly a young caregiver, can be an isolating experience since your friends and peers are not going through the same things as you. Did you experience that and if so how did you handle that?

Yes, most people soon forget what you are going through. While most were nice and checked on Kim and I, I felt that people were sympathizing more that empathizing with me. There is a very big difference emotionally between the two when you are going through something like this. Q: When a TBI occurs, the loved ones of those injured are thrust often dramatically into the role of caregiver. Overnight life changes for the whole family. Was there an AHH moment when you suddenly realized life was getting back to normal? Yes, Kim is a gym rat, so when she got back into the gym I felt like we were going to be okay. Q: What is next for you? While I am pretty excited and comfortable with Kim’s recovery, I maintain constant watch for any questionable signs or issue related to her injuries. Lastly, I owe her a trip to Italy, so I am working to get that set up for our 15th wedding anniversary next year.

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WITH HEARTS FULL OF GRATITUDE, THE BRAIN INJURY ALLIANCE OF ARIZONA THANKS ITS SPONSORS FOR THEIR SUPPORT.

Diamond Sponsors

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Silver Sponsor

Bronze Sponsors

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Board of Directors President

Directors

Dr. Robert Djergaian Banner Good Samaritan Rehabilitation Institute

Kim Covington Arizona Community Foundation

Past President

Dr. Christina Kwasnica Valley Physical Medicine & Rehabilitation

Rebecca Armendariz Banner Health

Ray Norris, Esq. Gallagher & Kennedy

Vice President Tom Nielsen Retired Executive Secretary Dr. Alex Hishaw University of Arizona Medical Center Treasurer Sean Badding Everlasting Services

Sharon Phillips Freedom Manor

Matt Riegel The Northern Trust Company Amanda Wigal-Schlosser Brandables Kay Wing SWAN Rehab

Carrie Collins-Fadell Executive Director

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