Marta Garcia is NARIC’s Bilingual Information and Media Specialist. Marta sustained a traumatic brain injury (TBI) in childhood and, in this week’s post, reflects on the experience of living with a TBI and how NIDILRR-funded research and informational products have helped Marta in managing physical and mental health, maintaining relationships, working, and participating in the community.
This spring will mark 40 years since my TBI, and I’ve been reflecting on how it has affected my life and about the tools and tricks that I use daily to manage my TBI. I’m also thinking about the NIDILRR-funded research and products that have helped me learn new tools and skills and given me the information I needed – right when I needed it.
Although my injury is considered mild, it still has affected my memory, my ability to process noise and light, and my ability to concentrate. This impacts how I work, learn, socialize, manage my physical and mental health, and participate in my community. Here are some examples of the tools and tricks that I use to help me manage my day:
- I write down things that I need to remember or do. Otherwise, I will forget and not do it. I joke that I should have bought stock in Post-It Notes because I use them so frequently!
- I use noise-cancelling headphones to help manage sensory overload in loud environments, including when I go to the movies with friends and family. I also use glare guards for my computer monitors to reduce discomfort and headaches caused by bright light or glare.
- At work, I walk laps around the office when I need a break. This helps me refocus on the task at hand.
I have learned a lot about TBI from the NIDILRR grantee community and their research into TBI as a lifelong condition. The 16 TBI Model System Centers conduct innovative research and development on their own and in collaboration, spanning the spectrum of recovery from acute rehabilitation to managing the lifelong impact of injury. I enjoy exploring the interventions, apps, and other resources they’ve developed. Here are some examples:
- Living with TBI: A Roadmap for Individuals with Traumatic Brain Injury guides people with TBI and their families, based on years of research on TBI as a chronic condition.
- Videos on What You Need to Know About TBI and The Importance of TBI Research: Understanding the Impact and Finding Solutions help viewers understand the basics of TBI and the importance of research and development in supporting continuing recovery.
- The UAB-TBIMS In-home Cognitive Stimulation Guidebook offers activities to stimulate thinking skills of people with brain disorders, with tasks grouped by level of difficulty.
Here are some other examples of recent NIDILRR-funded projects related to TBI:
- 2BeHEALTHY: Health Engagement After TBI, aims to improve long-term health outcomes for people with TBI by generating knowledge and creating programs that empower people with TBI to direct their healthcare.
- The Model Systems Knowledge Translation Center (MSKTC) provides a variety of research-based information resources developed with the TBI Model Systems, to help people with TBI, their families, caregivers, healthcare providers, rehabilitation professionals, and others to make informed decisions about their health and well-being. These include factsheets, infocomics, infographics, podcast episodes, and other information products on a wide array of topics.
- Self-Management Through an Electronic Framework After Traumatic Brain Injury (SELF-TBI), develops, tests, and disseminates SELF-TBI, an electronic self-management tool for people with TBI to help them monitor their symptoms, take action when symptoms emerge and persist, and identify and address other health-related issues.
Our own Research In Focus series summarizes many grantee research articles related to TBI, including:
- Diabetes Prevention Program May Help People with Traumatic Brain Injury (TBI) and Obesity to Lose Weight, Decrease Risk for Diabetes and Heart Disease.
- Strong Relationships May Help Adolescents Adjusting to a Traumatic Brain Injury.
- People with Traumatic Brain Injuries Who Socialize Online May Be More Involved in Their Communities Than Those Who Do Not.
You can explore more summaries in our Research In Focus series, or search for abstracts of these and other studies in our REHABDATA database at naric.com.
With everything I’ve learned, I know I can look forward to living another 40 years with my injury, thanks in large part to the research on TBI from the NIDILRR community!