Category Archives: Brain Injury News & Research

Announcement of “Chicken Soup for the Soul Recovering from Traumatic Brain Injuries” written by Sandra Madden.

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BIA-MA Staff & CSS Authors (Left to Right) Barbara Webster, Helen Stewart, Kelly Buttiglieri, Sandra Madden, and Suzanne D.K. Doswell

 

 

The Brain Injury Association of Massachusetts (BIA-MA) is proud to announce that stories written by five of our staff members, as well as several Massachusetts residents affected by traumatic brain injury (TBI), were selected for inclusion in the new Chicken Soup for the Soul (CSS) book slated to hit bookstores nationwide on June 24th.  This new book is entitled Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work.

Our Executive Director Nicole Godaire beamed with pride when presented with this new book.  “I am proud of my staff, having the courage to tell their stories to the world. I believe this book will become a valuable resource for families dealing with recovery from traumatic brain injury.”

The following are excerpts from our CSS Authors:

“This book is the quintessential book for those who want to step into the world of brain injury and is now a primary resource in the BIA-MA Western Regional office library.  It is easy to read, full of dynamic personal stories and exactly what we have needed as we attempt to explain brain injury to the medical world and general public.  Some readers will shed a few tears as they realize the life altering significance of TBI and others may finally be able to address their patient and client needs with a clearer sense of this silent epidemic from the voices of those who know.” ~ Suzanne Doswell, Western Regional Manager

“I am so very grateful to be a part of this book.  After reading most of the stories, I truly believe that this is the most powerful textbook about Brain Injury ever written.  It has so many different voices in chorus.  The harmony blends survivors, family members, caregivers and professionals into one song.   It is not merely academic jargon, but relates the experience and impact of brain injury through the heart.  It bridges the gap between words and experience.  I do not believe that one can read these stories and not gain a deeper understanding of Traumatic Brain Injury and have more compassion toward the people who live with it, in any capacity, on a daily basis.” ~ Helen Stewart, Western Region Information & Resources Outreach Coordinator

“It takes a long time to heal and rehabilitate from a brain injury, typically continuing long after your insurance coverage has ended.  It is the hardest work I have ever done but it led me to the most fulfilling work I have ever done, working with other survivors.  My mission is to let other survivors know they are not alone in their struggles and to encourage them to think about “How” they can do something instead of “I can’t”.   It is a journey, not a destination.  Never give up hope.” ~ Barbara Webster, Support Group Leader Liaison

“A few years after my accident, I ran into my neurologist on a plane, we were both going to St. Lucia for a vacation. I felt such pride and satisfaction in telling her I had graduated law school and was practicing law. I wanted her to know she should encourage patients to take small steps to accomplish their former, pre-TBI goals. She initially discouraged me from pursuing mine.” ~ Kelly Buttiglieri, Ambassador Program Coordinator

“Keeping a positive outlook has been key (for me) to not succumbing to the frustrating and painful consequences of TBI. Many amazing and inspirational people have come into my life since my accidents and I keep focus on this, the comfort and joy of these relationships.” ~ Sandra Madden, Administrative Assistant

Chicken Soup for the Soul was named by USA Today in 2007 as “one of the five most memorable books in the last quarter-century” and after 21 years of publishing, have sold over 100 million books in the United States and Canada alone. You now have the opportunity to bump that number past 100 million books by purchasing your copy of Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work directly from the Brain Injury Association of Massachusetts. We are selling the book for $12.50 (this is lower than the retail price and includes the cost of shipping and handling) and proceeds from the sale of each book will help support our mission: to create a better future for brain injury survivors and their families through brain injury prevention, education, advocacy and support.

To order online, visit www.biama.org. If you are unable to order online, please contact our offices and speak to Sandra Madden, she can be reached at (508) 475-0032 or toll-free (in state) at (800) 242-0030.

When you receive your book, look for BIA-MA colleagues’ stories on pages 64, 86, 177, 310, and 361.  Stories written by other Massachusetts residents affected by TBI appear on pages 15, 80, 128, 195, 212 and 307.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Responding to Frontline’s “League of Denial”

American footballRecently, PBS Frontline aired a special, “League of Denial: The NFL’s Concussion Crisis.” This two-hour special tells the story of “Iron Mike” Webster, former Pittsburgh Steeler, as well as the beginning of the research that shows degenerative brain disease develops following repeated concussive incidences. This documentary interviews many doctors, including BIA-MA Board Member, Dr. Robert Cantu, of Boston University and the Sports Legacy Institute. The evidence of Chronic Traumatic Encephalopathy (CTE) is “evident” through this documentary. It is very telling regarding the National Football League’s continual denial that multiple concussions cause long term brain damage.

The ironic piece is that many Americans revere pro-athletes that hurl themselves at each other for sport, for a ball, for a win…for a paycheck. Though, we raise up these athletes from as early as park and recreation departments let them –age 9? This repeated concussive behavior doesn’t just appear in football, though football has taken a front seat in the debate. It’s football players who have filed a huge lawsuit against their former employer, the National Football League. Football players are more notably donating their brains to science following their deaths. Junior Seau, former New England Patriot, committed suicide following his troubles that he believed were caused by his repeated concussions.

It’s not just football, though. It is boxing, soccer, basketball, volleyball, baseball, cheerleading, wrestling, and many other activities. It is veterans returning from war, being in blast zones day in and day out. The brain is racked when the head is shaken. It is seen in car accidents, and bike accidents. There are many ways that the human body can experience concussion.

It is apparent in the brain injury community that this is and has been a growing issue. Brain injury will reach epidemic proportions by the year 2020. It far exceeds the incidence of even HIV/AIDS and breast cancer. This is not to lessen those ailments, but to show the growing condition that many individuals face. When journalists make light of issues that we in the brain injury community have known about for a long time, awareness is finally raised about the cause we fight for. It’s only taken so many years…

Whether the NFL agrees that repeated concussions and hits can cause CTE or degenerative brain disease is irrelevant, since continuing research at The Sports Legacy Institute with the brains of many deceased athletes and veterans is yielding this result. The inside of the skull is jagged and sharp. If you bump your arm on something hard and sharp, you bruise. Wouldn’t it stand to reason that if you bump an organ…the brain…on the inside of the skull that it would bruise as well? The fluid surrounding the brain is a cushion, but the principle of inertia is at play. An object at rest stays at rest until acted upon by another object or force. An object in motion will stay in motion until acted upon by another object or force. When the head rams into something, the brain continues moving inside until it is halted by the skull. So many of this experience is taking its toll on professional athletes.

The recorded incidence of concussion is increasing, because student athletes, coaches and parents are getting the idea that this could have severe long term affects. It’s not just about “getting your bell rung” anymore. It’s about the fact that post-concussive syndrome is rough, and after incurring one brain injury, you are more likely to suffer subsequent brain injuries. Higher risk! You are at a higher risk following an initial brain injury. Take care of yourself.

While this American pastime will continue to bring people together and motivate young athletes with role models, let’s hope the “league of denial” becomes a league of acceptance and makes athletes sit out if they experience a concussion, or that the safety equipment continues to evolve in hopes that protection and prevention will be the main goal. We welcome your thoughts on the documentary “League of Denial” and hope that you share them with us here or on facebook or twitter.

What is it with balance and vestibular issues post-brain injury?

elderly african american lady with canePortions of this blog were written with information from the Brain Injury Association of America’s document on vestibular and balance issues, with input from David Krych, MS, CCC-SLP and Ann Pereira-Ogan.

Following a brain injury of any kind, one might experience issues with balance–keeping yourself upright and walking in a straight line without tipping or drifting. Did you know that almost 40 percent of individuals with a diagnosis of traumatic brain injury (TBI) complain about balance issues? You might expect dizziness following a brain injury. These issues are referred to as “vestibular disorders.” Another vestibular disorder is vertigo, or a feeling of spinning. These disorders are commonly misdiagnosed and diagnosis following a brain injury can be challenging.

Brain injury can cause inner ear damage that can develop into vestibular dysfunction, but these issues might not show immediately following a brain injury. In fact, the symptoms of vestibular disorders can appear in days, weeks and months following an injury, which is why they are so difficult to diagnose. A neurologist or ear, nose and throat doctor can evaluate an individual for several symptoms including:

  • Visual symptoms such as trouble focusing, blurred or double vision, reacting to busy environments, sensitivity to light, discomfort when focusing on far away objects, decreased night vision and depth perception.
  • Auditory symptoms such as hearing distortion or loss, tinnitus (ringing in the ears), sensitivity to loud noises and environments and imbalance or dizziness caused by loud noises.
  • Cognitive or psychological symptoms such as difficulty concentrating, short-term memory loss, confusion, disorientation, difficulty following directions, anxiety, panic or depression.
  • Other symptoms like nausea, motion sickness, ear pain or headache, sensation of fullness/fluid in the ears, slurred speech, vertigo or spinning or the inability to complete activities at work and home.

If you go to a neurologist or ear, nose and throat specialist, you want to make sure the specialist evaluates you on the following things:

  1. Your patient history
  2. Vestibulo-Occular function
  3. Benign Paroxysmal Positional Vertigo (BPPV)
  4. Motion Sensitivity
  5. Balance
  6. Visual System
  7. Motor/sensory systems
  8. Vascular
  9. Headache
  10. Cognitive
  11. Mood Stability
  12. Current activities in home, work or school
  13. Pain issues

Your specialist will make sure you are at a lower risk of falling, as that is the leading cause of TBI. Then he or she might consider adapting your lifestyle, substituting activities in your lifestyle, and having you habituate yourself to some new things. Everyone suffers differently from vestibular issues, but there are many common adaptations that specialists recommend such as relaxation techniques like yoga or tai chi, gaze stabilization exercises, periods of rest, environmental changes and schedule adaptations. Vestibular Rehabilitation Therapy (VRT) is an exercise-based program designed to promote central nervous system compensation for inner ear issues. It can help with BPPV and reduced inner ear function. The goal of VRT is to retrain the brain to recognize and process signals from the vestibular organs in conjunction with vision and input from the muscles and joints. Sometimes symptoms of vestibular disorders get worse before they get better with the different therapies and adaptations, but it’s a process in which your body is reconnecting and retraining the parts of the brain that aren’t getting adequate signals from the vestibular systems as it did before.

You need a doctor’s evaluation if you feel any of the above symptoms or have continuing issues. We like to tell you to call our office if you are living in Massachusetts and need a list of providers in your geographic area. Our number is 800-242-0030 and you can speak with an information and resource specialist about this and many other issues. Never try to self-diagnose. Always seek the service of a medical practitioner.

BIA-MA Appoints New Executive Director, Nicole Godaire

Nicole Godaire head shotThe Brain Injury Association of Massachusetts (BIA-MA) has appointed Nicole Godaire as its new executive director. Nicole has served the Association for the past eight years in multiple capacities, including her most recent position of Assistant Executive Director and Manager of Education.

“Nicole has proven herself to be highly organized and effective in developing and implementing strategies that have led to improving and expanding services for individuals with brain injury and their families,” says Assistant Commissioner Debra Kamen, of community living for the Massachusetts Rehabilitation Commission. “She is well positioned to be the new Executive Director of BIA-MA as she has developed relationships with legislators, and she has the skills, passion and knowledge to help BIA-MA accommodate the changing environment for brain injury.”

During her tenure at BIA-MA, Nicole has led advocacy efforts which resulted in an increase of funding for the Head Injury Treatment Services (HITS) Trust Fund from 60 percent to 75 percent in 2013, then back to 100 percent for fiscal year 2014. She was instrumental in organizing BIA-MA’s leaders and management team in a year-long strategic planning process that led to the creation of a five-year organizational plan to take place from 2013-2018. She collaborated with government executives and legislators like Senator Harriett Chandler and Rep. Kimberly Ferguson during the development of the Brain Injury Commission report that addressed serious gaps in brain injury services across the Commonwealth.

“Nicole brings to the table eight years of brain injury experience, having collaborated with Massachusetts Rehabilitation Commission personnel and corporations to plan the Annual Brain Injury Conference, which is now the largest brain injury conference and only one of its kind in the state,” says BIA-MA Board President and Braintree & New England Rehabilitation Hospitals Director of Business Development Teresa Hayes. “She has been responsible for the organization’s operations and advocacy, and worked closely with Arlene Korab, BIA-MA retired executive director, to lead the organization. She is more than prepared to be the Association’s Executive Director.”

Incorporated in 1982, the Association is a chartered affiliate of the Brain Injury Association of America. BIA-MA collaborates with the Executive Office of Health and Human Services, the Massachusetts Rehabilitation Commission, the Department of Public Health, the Veterans Administration, the Registry of Motor Vehicles, and other groups to prevent brain injuries and serve survivors.

The Brain Injury Association of Massachusetts, a private, non-profit organization, provides support to brain injury survivors and their families, offers court and school prevention programs, trains professionals in the field, and advocates for improved services and related legislation. For more information, call (800) 242-0030 or visit www.biama.org.

Brain Injury Links of the Week

There is so much going on within the field of brain injury, that it’s difficult to stay abreast of all the latest news, research and happenings. With that in mind, we decided to start a new, weekly feature called “Links of the Week.” These posts will include the latest videos, articles, blogs we’re reading, etc. so you can stay on top of the latest in brain injury.

Have suggestions or ideas for links or articles we should feature? Leave a comment below and include the link or email us at socialmedia@biama.org.

Concussion is a hot topic among not only those in the field of brain injury, but also among parents, teachers, coaches and student athletes. The New York Times published an article this week “Concussion fears lead to growth in specialized clinics for young athletes” about the opening of dozens of youth concussion clinics in approximately 35 states, despite the fact that there is still “no agreed-upon, established formula” for the treatment of brain injuries.”

Last Sunday evening, 60 Minutes featured an excerpt from “Invisible Wounds” and shared the experience of a military veteran with a traumatic brain injury (TBI). Missed the broadcast? Catch up here.

CBS News also published an article on concussion this week. The article features startling results from a survey of 120 high school athletes and their thoughts and behavior when it comes to concussion safety.

What articles on brain injury have you read this week?