BIRC-MS Spring Summer Newsletter 2015 by Mount Sinai Health System

Brain Injury Research Center Volume 2, Issue 2

Resources for Individuals with TBI & Their Friends and Family MARCH ON FOR BRAIN INJURY: HUDSON VALLEY WALK Join the Brain Injury Association of New York State for a fundraiser walk at the The Walkway Over The Hudson on August 29, 2015 in Highland, NY. This walk is meant to unite brain injury survivors and their families in celebration. You can join the walk as an individual or form a group. Not able to attend? Virtual registration and walk support is also available. Event details and futher information about reigistration and fundraising can be found here.

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IN THIS ISSUE Resources for Individuals with TBI & Their Friends and Family Resources for Health Care professionals Research Information TBI Community Highlight Publication Highlight Links from Newsletter

ABOUT US

BRAIN INJURY ASSOCIATION OF AMERICA WEBINAR: COLLEGE AFTER BRAIN INJURY How can students find a college that is right for them? Strategies that may have worked in high school may not be sufficient in a college environment. How can students develop effective strategies and communicate with professors about accommodations they may need? What information is needed to share with the college to ensure that appropriate accommodations can be offered? Get the answers to these questions and more by attending this BIAA-hosted webinar on September 23, 2015. Register for this event or other upcoming webinars here.

The Brain Injury Research Center of Mount Sinai (BIRC-MS) conducts cutting-edge research, with a primary focus on addressing the challenges of living with traumatic brain injury, or TBI. Our research aims to expand what is known about the long-term challenges that people with TBI face and approaches to leading better lives after injury.

ASK THE EXPERT Q&As BrainLine’s “Ask the Expert” series features questions and answers about traumatic brain injury (TBI) each month. Below you will find a summary for two of these highlighted questions. Look into other “Ask the Expert” Q&As here.

What is Emotional Flooding? A mother asked the following question after her daughter broker her neck in a motor vehicle accident. After her accident, she had spells of uncontrollable crying and was, in turn, diagnosed with bipolar disorder and put on medication.

Q: “Can TBI be confused with being bipolar?”

This question was answered by Dr. Jacqueline Borg, a Child Psycholgoist.

A: “If she has not had a comprehensive neuropsychological evaluation, I would

recommend that she have one to determine the extent of her brain injury and its impact on her neurocognitive and or neurobehavioral abilities. Neurocognitive issues after a brain injury can effect a person’s emotions, behavior, and cognitive function.”

Read Dr. Borg’s full answer to this question here.

Figuring Out Social Security Benefits After a TBI

Q: “I was injured in a car accident two years ago and sustained a serious traumatic

brain injury. Now, I’m not able to work and my doctors tell me I’m permanently disabled. I applied for Supplemental Security Income through Social Security and was just denied. What am I supposed to do now?” This question was answered by Michael Kaplen, an Attorney at De Caro & Kaplen, LLP. In order to answer this question, he broke the question down into various parts. Some of these sections give advice, such as his “Don’t take ‘no’ for an answer” and his “File your request for reconsideration or appeal in a timely manner,” while others helped answer specific questions within the larger question, such as “Why was my application for benefits turned down?” and “What records do I need to submit?” Read more about his advice and answers to these questions here.

Research Information Here at Mount Sinai, researchers are leading cutting edge research that investigates the long-term effects of traumatic brain injury (TBI) in the general population. This research builds on the growing interest in the long-term effects of TBI and popular news coverage of former athletes who donated their brains for research and were diagnosed with a unique type of brain disease called chronic traumatic encephalopathy (CTE). Though not much is known about CTE, it is believed that repeated brain injuries trigger its development. The Late Effects of Traumatic Brain Injury (LE-TBI) Project aims to learn more about the long-term effects of TBI in the general population. Since over 1.7 million people sustain a TBI in the United States each year and the number of people in the community who have experienced one or more brain injuries is far greater than the number of elite athletes who have experienced repetitive injuries, it is important to understand how TBI affects the brain after single or multiple injuries. There is no brain bank in the United States that focuses on collecting brain tissue from TBI-survivors. Studies using donated brain tissue following death are the most promising avenue for researchers to learn how to prevent and cure disorders of the brain. The LE-TBI Project currently enrolls living TBI survivors into its Brain Donor Program, and gathers information about their cognitive, emotional, and behavioral functioning, as well as a MRI scan and a blood draw for genomic analysis. Participants are then asked to consider becoming brain donors to further research efforts and to help those in the future who may experience similar injuries. To learn more or to see if you qualify, contact Elissa Flannery at (212)-241-4706 or via email at elissa.flannery@mountsinai.org.

Resources for Healthcare Professionals TBI IN THE US: REPORT TO CONGRESS The Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation, a publication of the CDC, in collaboration with the NIH, reviews what is known about traumatic brain injury. The report focuses on three areas: TBI burden, TBI outcomes, and TBI rehabilitation. This is a good resource for those looking to learn more and review current research and findings related to traumatic brain injury. Click here to read the full report...

“If we want more research into certain types of illnesses, then it's really important that we can provide the scientists with the tissue they need in order to do the work." - Dr. Jill Bolte Taylor.

TBI Community Highlight: Sergio Di Giovanni, Developer of the QCard App

How does an individual go from being at his lowest depths of struggle, frustration, and helplessness, and then transform his situation to the point where he is not only helping himself, but on the verge of improving the lives of TBI survivors across the globe? A special Traumatic Brain Injury (TBI) survivor has the story that shows us how.

aids. He persistently looked for other ways to help complete ordinary tasks and give him reminders. He did an exhaustive search of the top-rated apps for memory, to-do’s and lists, spending over $50 on apps. None of them helped.

Growing up, Sergio Di Giovanni had a natural ability to draw from a very young age, and when he was introduced to his first computer at age 10, he was absolutely fascinated. By 12, he had taught himself how to write software and was coding games such as Hangman, Connect Four and 21.

“Nothing really was annoying enough for me,” Serg joked, referring to the need of alerts that constantly badger and remind him of tasks to complete. “It just seemed like these reminder apps were made for people who don’t need reminders because they all kept failing me too.”

So it was of little surprise that after attending Mohawk College of Applied Arts and Technology, Di Giovanni meshed his passion for design and technology, and started his own web design firm. The company became very successful in a short period of time. He soon won awards for ‘best designed website in Canada’, and acquired clients across Canada, USA, Italy & Hong Kong. At 26, he fulfilled his childhood dream of owning a Ferrari Testarossa. By 29, it seemed Serg had it all: a thriving business, real estate investments and a wedding on the horizon. Then came the day that would change his life forever. Driving home in his vehicle after picking up wedding invitations, an oncoming van ran a red light and t-boned him on the driver’s side, forcing his car into a concrete pole, and instantly knocking him unconscious. Sergio was admitted into the Acquired Brain Injury program at Hamilton Health Sciences … to this day he has no recollection of this event. Serg had been an exceptionally talented web designer and programmer. However, after the car crash, he found it increasingly difficult to continue and keep up with the work he had successfully achieved. His brain injury limited his ability to manage the multiple projects and responsibilities his life demanded. As a result, he lost everything he worked so hard for. He closed his business, sold off his real estate interests, and sold his Ferrari.

“I went from having a million and one things to do and managing it effortlessly, to having difficulty remembering to take the chicken out of the freezer for dinner, which led to depression, anger, frustration and a whole stretch of dark years,” recalls the newly-minted father. It was during this rehab phase of his life that support workers taught him strategies to write things down in paper calendars, sticky notes, white boards and notepads as memory aids and to help him stay on track. “I tried and I struggled with these traditional memory aids, but it came to a point where I simply gave up on it. I just couldn’t justify investing so much time and effort into a system that would fail me more often then not. What’s the point of writing something down and never seeing it again?”, said Serg. A few years later, the Apple iPhone was introduced and Serg immediately thought this device could be the solution he’s been waiting for. “What a perfect device I thought! I could carry all my reminders and appointments in one device, and since it’s my phone, I’m already accustomed to carrying it with me everywhere I go so it’s one less thing to have to remember to bring!”, Serg said excitedly. But, shortly after using his iPhone as his memory aid, he quickly discovered that all it really did was mimic traditional memory

So his wife suggested he create his own app. “He kept complaining to me of things he wished his iPhone could do and things he wished it would stop doing. So I said to him one day, why don’t you make your own damn app.” And that was the day Qcard was born. While his injury prevented him from programming the software himself, he could still deliver his ideas, input and vision. But how does it differ from other task-oriented applications already in existence? “There’s a whole host of things that make Qcard very different from other reminder apps. My sole belief was to create a tool, a memory crutch I could lean on and trust it wouldn’t let me fall.” Serg explains. “Qcard will never let me forget, continuously reminds me and guides me to completion … even through prolonged tasks like doing laundry. It’s become my life app. Anything I need done, gets done - anything I need to remember, is remembered, and to regain that

feeling of independence and confidence, is invaluable.” In addition, Serg adds, “It’s really my intimate insight into the challenges I live with that gives me the perspective into problems most others can not see or understand. I used common pitfalls and frustrations to create solutions and designed an app tailored to my personal needs.” “Best of all”, Sergio says “Qcard gives us the ability to send & receive Reminders, Guided Tasks and Appointments! Families can now manage, organize and delegate life together with ease, reducing tension and stress. Occupational Therapists can arm themselves with a catalogue of commonly used Gudied Tasks and Reminders and simply send them to their clients.” This is an application that can aid not only TBI survivors, but even those with ADHD, Alzheimer’s, dementia, as well as the elderly. Sergio’s story is inspiring because it symbolizes a man who was once at his peak before falling to a low, only to climb back up despite facing very real adversity. He recalls close friendships he lost after his injury, blamed at least partially on a lack of knowledge regarding brain injuries and the effects it has on those who have it. Serg admits he has changed significantly himself in that time, and has become more aware. His new project is clearly indicative of that. “I can confidently say that Qcard has helped me regain my independence and get my life back on track. Now, I want to help others do the same.” He is clearly on his way towards achieving that.

Qcard is available for download on the Apple App Store. If you would like more information you can contact Sergio at sergio@qcard.ca or visit www.Qcard.ca.

Publication Highlight

Links from this Newsletter (cont’d) RESEARCH INFORMATION

Dams-O’Connor K, Cantor JB, Brown M, Tsaousides T, Gordon WA. (2015) Long-term social integration and community support. Handb Clin Neurol. 2015. Traumatic brain injury (TBI) can often result in reduced social participation, despite how severe the injury was or how long ago it occured. This paper examines the current literature on post-TBI social integration and its relationship to depression and executive dysfunction, while also touching on the research into possible interventions in this area. To read more, access the full paper here.

Links from this Newsletter The URLs below correspond to the links in this newsletter. If you are unable to open up a link in this newsletter, simply copy and paste the corresponding link below into your web browser for easy access!

DR. JILL BOLTE TAYLOR on the importance of brain tissue donation • http://www.nimh.nih.gov/news/media/2013/neurobiobank-jill-bolte-taylor. shtml

TBI COMMUNITY HIGHLIGHT

SERGIO DI GIOVANNI, DEVELOPER OF THE QCARD APP • http://www.qcard.ca/

PUBLICATION HIGHLIGHT

LONG-TERM SOCIAL INTEGRATION AND COMMUNITY SUPPORT • http://www.ncbi.nlm.nih.gov/pubmed/25702232

Thanks for Reading! To update your email address or unsubscribe from this newsletter, email us at birc@ mountsinai.org. Feel free to share this information with friends and family. Happy reading and be on the lookout for future updates and announcements!

RESOURCES FOR INDIVIDUALS WITH TBI & THEIR FRIENDS AND FAMILY

MARCH ON FOR BRAIN INJURY: HUDSON VALLEY WALK • https://hudsonvalleymarchon.bianys.org/ BIAA WEBINAR: COLLEGE AFTER A BRAIN INJURY • https://secure.biausa.org/SearchResult.aspx?CategoryID=61 ASK THE EXPERT Q&A • http://www.brainline.org/landing_pages/features/ate/ate.html What is emotional flooding? • http://www.brainline.org/content/2013/04/what-is-emotional-flooding.html Figuring Out Social Security Benefits After a TBI • http://www.brainline.org/content/2009/03/ask-expert-figuring-out-social-security-benefits-after-tbi.html

RESOURCES FOR HEALTHCARE PROFESSIONALS

TBI IN THE US: REPORT TO CONGRESS • http://www.cdc.gov/traumaticbraininjury/pubs/congress_epi_rehab.html

Stay connected to the BIRC on the Web! BIRC Website Link BIRC Facebook

This newsletter was developed under grants from the U.S. Department of Education, the National Institute on Disability and Rehabilitation Research (NIDRR), grant number H133A070033 and the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC), grant number 5 R49 CE002092-02. However, this does not necessarily represent the policy of the U.S. Department of Education or the U.S. Department of Health and Human Services and you should not assume endorsement by the Federal Government.