Tag Archives: traumatic brain injury

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.

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Think A-Head Redesigned and Revamped, Coming to a School Near You

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Students get ready for prom. Do they know the dangers of drinking or drugging and driving?

Did you know that the brain contains 100,000 miles worth of blood vessels–enough to circle the earth four times?  The brain contains 100 billion neurons, which are cells, known as gray matter, that process all of the information in your brain. Each neuron is connected to other neurons by up to 40,000 synapses. This means that the number of connections in the brain outnumbers the number of stars in the universe.

Did you know that the brain is made up of 75% water, and uses 20% of the oxygen in your body at any given time?

What a powerful organ…one worthy of protecting, since it houses so much information and capability.  However, brain injuries are the leading cause of death and disability in young adults and teenagers. The recorded instance of concussion, car crashes and substance use by this group is increasing. So, what can be done to enlighten students and give them knowledge, allowing them to make better choices for their own safety?

The Brain Injury Association of Massachusetts has a solution. Think A-Head is a dynamic, school-based program that has been teaching students to avoid risk-taking behavior and develop healthy living habits for nearly 20 years. This curriculum is tailored to the age of the students and to the specific needs of the school and its community. The program offers a core curriculum with amendable activities based around the following issues:

  • Brain Injury: General knowledge of the brain, brain injury, high-risk groups and behaviors
  • Drugs and alcohol: Breaking down drugs to include depressants, stimulants, inhalants and prescription pills and the affect on the teenage body and brain
  • Impaired driving: How alcohol affects driving, the dangers of impaired driving and the increased risk of sustaining a traumatic brain injury (TBI)
  • Seatbelts: The benefits of using them and the detriments of not using them; statistics on usage and common misconceptions about seatbelts
  • Concussions: Focusing on sports concussions, signs and symptoms, and information on what to do in the case of a suspected concussion; the roles of coaches, student athletes, teachers and school systems in this process

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You may have experienced this program in your school before. However, BIA-MA has completely revamped the program to be a more effective educational and preventative tool. Your students will experience new presentations with interactive question-and-answer sessions to make sure they are really consuming the information. In addition, a brain injury survivor speaker will be on hand to discuss their experiences with brain injury and to also pose situational questions to the students. When reality is standing before them, how do they respond?

Thanks to a generous gift from the Sarah W. Rollins Charitable Trust, BIA-MA is able to offer this redesigned Think A-Head program at a discounted fee of $75 for the first program and $25 for each additional program held at your school on the same day. Think A-Head aims to inform and engage students and supply them with applicable knowledge so that they can make more informed choices during a most impressionable time in their lives.

Science has proven that neurons continue to develop throughout an individual’s life, at least in some parts of the brain. In addition, fresh cells are actively involved in the formation of memory. This organ should be protected, as it serves as the “engine room” or “control room” for all of your body’s faculties. An individual’s choices affect the brain on a regular basis.

To bring the Think A-Head program to your school in Massachusetts, visit the webpage today to book a program (or more!) and learn more about how educating students about the risks and impact of brain injury helps them make better choices. To book your program immediately, click here.

Tips to Avoid Over-stimulation

Scott Doane is a TBI survivor and BIA-MA Staff Member

Scott Doane is a TBI survivor and BIA-MA Staff Member

Today’s blog comes from BIA-MA staff member and survivor of traumatic brain injury, Scott Doane. As a survivor, he gives first hand tips on how to take care of yourself and avoid over-stimulation when you go out into the world.

My name is Scott and I sustained my brain injury when I was 7 years old. I am now 53 years old and still face problems that many others with with brain injuries have as well. Not only did I have to deal with my brain injury, I had physical limitations as well. The right side of my body was paralyzed so I walk with a slight limp, depending how tired I am. As I grew up I adjusted to whatever life had in mind for me. I also learned about my mental and physical limitations.

Now that I understand more about brain injury, I have been more aware of what situations to avoid, so I can take care of myself. For instance, when my wife and I go into a restaurant I try to sit with my back along a wall or window. I feel better in a booth instead of sitting at a table in the middle of the room. This helps keep stimulation to a minimum. If I prefer more light I may want to sit where there is more lighting, or less lighting. If I am going shopping at a mall I try to stay focused on what I am getting or where I am going. If I go to a big mall that I am unfamiliar with, it takes time for me to feel comfortable. I will look for the restrooms, exits and look at the basic layout.

When I have gone to company parties that have loud music I hung out in one location or had a conversation with someone. Sometimes I’ve had a difficult time having a conversation due to the noise. When that happens I take myself out of the area, outside or to a quieter section. It’s also a good idea to do a little home work or think ahead before putting yourself in an uncomfortable situation.

By going through it in my mind, I can take control of what I can, and not set myself up. Obviously there are things that will happen that I have no control over and it helps me to remain somewhat flexible. It is important to be aware of how you are feeling, trying to stay in your comfort zone. Look at your surroundings and stay focused. If you have been in an environment that has been overstimulating or if you’re feeling tired, take a break and take yourself out of the environment to recharge.

Steps you can take to avoid or diminish over-stimulation:

  1. Be well rested.
  2. Plan ahead (Phone, wallet, meds, money, ID, transportation, time schedule).
  3. Become familiar with your environment (location of restrooms, exits, floor plan, and location of where you want to go).
  4. Allow yourself to take a break and relax. Have a snack and stay hydrated.
  5. Don’t overdo it. It is not worth running yourself down.
  6. Stay positive and try to remain flexible.
  7. Be safe.

My Sister, Kim, Part 2

Kim Boleza on her snowmobile

Kim Boleza on her snowmobile

This is the second part of a two-part blog post by Stephanie Deeley, whose sister Kim lived with, and ultimately died from a traumatic brain injury caused by domestic violence. 

…During this same period, the domestic abuse escalated and we as a family were very concerned about Kim’s safety.  Kim had always been independent and had always made her own decisions.  We could not convince her that staying in that situation was too dangerous.  She knew that environment, it was her home, and the idea of dealing with a big upheaval in her life was more than she could handle given all the issues related to her brain injury.  Kim decided staying was the best choice.

In December of 2011, Kim’s husband held her captive in her own home for several hours.  As a result of that event, he was charged with attempted murder and kidnapping, along with a slew of other charges.  Kim was devastated, and went back and forth between being angry and wanting her husband punished, to feeling guilty and wanting him home.  Again, the turmoil and the stress of an unknown and fluid situation was very, very difficult for her to handle as a result of her brain injury.  The court took the decision out of her hands and brought charges against him and held him for 6 months.  Kim found herself living alone, unable to drive, struggling with balancing her check book, and worried about having a seizure when she was home alone.  Ed and I were always there, to drive her to the grocery store or to a doctor’s appointment, to help with finances or to listen to her when she needed to vent. But, she felt lost and dependent and she did not like that.  When her husband was released from jail, she petitioned the court to let him come home.  She was more comfortable being dependent on her husband than her siblings.

It was “normal” for your husband to take you to the doctor or the grocery store, and to balance your check book.  She felt guilty asking us to take time away from our families to help her.  No matter how many times we told her it was not a problem, she still felt bad.  She had a husband, and he should be the one helping her. She could not see how ludicrous it was to be dependent on the person who caused her injury which took away her independence.  And again, Kim was not going to tell people she was a victim of domestic abuse any more than she would tell them she had a brain injury.  Her pride got in the way, as it would for any of us, I think.

Kim’s husband never met the expectations Kim had.  He did not take her to her doctor’s appointments, he did not take her grocery shopping, and he did want to help her.  In fact, he complained to his “friends” about how he had a wife who was disabled and how tough it was for him to be saddled with that burden.  Never did he mention that her disability was caused by him.

On March 9th of this year we all got together at a restaurant in Hingham to celebrate my brother Ed’s birthday.  After much discussion and back and forth, it was decided that Kim’s husband would not join us.  Ed picked his “little” sister up as he had done hundreds of times over the last few years, and Kim spent the night surrounded by people who loved her and protected her and wanted the best the world could give her.  She talked with her niece Catie about her upcoming wedding, and talked with her godson Patrick about his college classes, and chatted with her nephew Matthew about his house on the beach.  She reminded Ed that he was getting old, and told me to stop worrying about her.  She laughed and joked and teased and was the Kim we all knew and loved.  I hugged her when we were leaving the restaurant and she got in Ed’s car and he brought her home.  That was the last time any of us saw Kim alive.

On Sunday evening, March 10th, Ed received a text from Kim about a family event at 7:30.  At 8:20, Kim’s husband called to tell us Kim was on the way to the hospital in an ambulance.  By the time we arrived, Kim’s was gone.  We may never know for sure what happened that night, but there are some things we are sure of.  Kim was a victim of domestic abuse.  Kim’s head injury was caused by her husband.  Whether Kim died of a seizure, or some event involving her husband, she died as a result of domestic abuse.

According to the Brain Injury Association, it is not surprising to hear that a brain injury was caused by domestic abuse.  The stigma of having a brain injury is still something we need to fight, as is the stigma of being a victim of domestic abuse.  I cannot even imagine the difficulty in having to deal with both of those issues as my sister did.

Kim’s husband is still facing the charges from the December 2011 incident.  As part of his defense, he is claiming that Kim had severe memory issues and could not possibly be sure of what happened on the night in question because of her brain injury.  The injury he caused is now what he is using to defend himself against the charges of attempted murder.

Kim’s life was changed as a result of her injury.  She lost her independence and her analytical mind, and she lost her job.  But, Kim continued to move forward and try to find a way to improve her life.  And on many occasions, she continued to share her love and laughter with the people who loved her most in this world, and who miss her the most. My relationship with my sister was one of the most important in my life.  There were so many times I relied on her advice to analyze a situation or figure out a course of action.  I trusted her judgment, and valued her insight. Most importantly, I loved her.  As she grew from my baby sister to my friend, our relationship grew also, and as her life changed because of her brain injury, some relationships in her life were altered…some did not survive.  But family was not one of them.  She was always the fun one, the one who could make you laugh just as easily as she could make you see a need to change.  She never judged and she always loved. She valued truth, even when it was tough to hear, or tough to tell, she was kind and forgiving, and a trustworthy keeper of your secrets.

Given more time, I believe Kim would have found a new success in life, and would have learned to live a full and productive life even with the limitations that were a result of her brain injury.  Who knows what the future holds for new treatments and medicines. Use every resource available to you, including those offered by the Brain Injury Association.  Every day is a new opportunity to grow and to improve.  Don’t let your brain injury define your life.  Don’t settle for less than you deserve.  Do not be afraid or ashamed to acknowledge your brain injury, or talk about how it impacts your life.  What we tolerate, we cannot change.  Don’t tolerate a life that is less than it can be.  Someone once shared with me that if you are always trying to be normal, you will never know how truly amazing you can be.  I hope to always remember that…

My Sister, Kim, Part 1

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Today’s post comes from Stephanie Deeley, the sister of Kim Boleza, who lived with a traumatic brain injury and ultimately died from it. Her story will be told in two parts. Look for the second part in an upcoming post.

I recently sat down with Emmy in BIA-MA’s Marketing and Communications department to talk about my sister Kim, who had a traumatic brain injury as a result of domestic violence. To describe Kim, you would need a dictionary full of words!  Smart, funny, gutsy, loyal, determined, dedicated, kind and loving all come to mind.  If you know what’s good for you, never get in Kim’s way when she is determined to accomplish something.  Kim set high expectations and goals for herself and she was always successful in achieving those goals.

Kim went to college and grad school, but not on the schedule that most people do.  She actually flunked out during her first semester at UMass Amherst. I am convinced more because she simply did not want to be there than because of anything else. If you are not in school, then you have to work, and Kim had a few interesting jobs before settling in as a client service representative for an organization that cared for adults with severe autism.  Kim was great at her job, and loved by her co-workers and her clients.  But, her clients were a challenge, and one day Kim was hurt at work.  My brother Ed and I both received calls that she was on the way to the hospital in an ambulance, and off we went dreading what we would find when we arrived.  I remember thinking how grateful I was that it was “only” a concussion.

Kim finally figured out after a few years what she wanted to do, and she went back for her Bachelor’s degree, and after a few years working, she went back again to grad school where she excelled.  She graduated in May of 1999 and started interviewing for her first “real” job.  In September of that year she went to work for Children’s Hospital, and began a career that took her to three of the best known hospitals in the world, and earned her a reputation as one of the best in her field.  While at Children’s Hospital, she was driving home one night when a deer ran out of the woods in front of her. An avid animal lover, she of course swerved to avoid hitting the deer, which resulted in her car being totaled and another concussion.  And again I remember thinking, “Thank God it is only a concussion!”

Kim Boleza

Kim Boleza

Kim never wanted to get married but had some great boyfriends over the years, so when she introduced us to a new man in her life in 2002, we didn’t think too much of it.  I do remember driving to a skating contest to see our niece after one of her first dates with this man, and she told me she felt like he was stalking her simply because he called to make sure she made it home safely.  He was 12 years older than her, my age, and I laughed and told her it was an age thing, but I do remember thinking there was something different about the way she spoke about this new man.  In the summer of 2004, he proposed to her on the jumbo-tron screen at a Red Sox game.  I remember being a bit concerned at the time, thinking he did that knowing she would not embarrass him by saying no in front of all those people.  I should have listened to my gut.

Kim married in September of 2005.  It was not too long after that when she first said she did not think she was cut out for marriage.  I told her she had been single for a long time, and adjusting would take some time.  I never thought to ask if she was safe, or if she was afraid of her husband.  I should have.

Eventually our suspicions that there was domestic abuse were no longer suspicions.  Kim’s husband had started drinking, he was not coming to family events, and Kim was showing signs of withdrawal from her family and friends, a classic symptom of abuse.  One February day Kim informed us that she had fallen on the ice in her driveway and hit her head pretty hard. I don’t think any of us bought her story, but we all respected her right to her privacy, and thanked God it was “just a concussion.”

Kim was soon experiencing severe issues with headaches, difficulty remembering appointments and schedules, and a variety of issues that seemed to point to something more serious. Shortly thereafter she had her first seizure, or at least the first that she told us about.  We also began to notice that she would send emails that were just gibberish, more than just spelling errors.  Kim was still working and we expressed to her our concerns.  By this time, Kim had been diagnosed with a brain injury, but she did not want to tell her employer that. She was having difficulty doing the paperwork for her job and missing time from work because of the serious headaches and time in the ER.  But, Kim would not tell her employer that she had a brain injury.  She eventually lost her job, and even then, Kim preferred to have them think she was incompetent rather than that she was a person with a brain injury.

Kim’s seizures were difficult to control and it was a constant effort to try and find a combination and dosage of medicines to control the seizures.  Kim never knew when a seizure was coming; she had no aura prior to the event.  After several car accidents, it was determined that Kim was having mini-seizures, and she stopped driving.  She was experiencing debilitating headaches that brought her to the emergency room on a regular basis. Kim had cognitive testing done and she finished in the bottom 10% on executive functioning skills.  This was an area Kim had excelled at all her life–the ability to prioritize, organize and analyze.  It was a difficult day for Kim.  She was hospitalized on several occasions to try and get a better understanding and control of her symptoms.  Kim recognized that she had limits, but she always tried to push the envelope and find alternatives.  It is worth noting that at all the appointments Kim had, never did one medical professional suggest the Brain Injury Association as a resource to Kim.  Ed saw a billboard on the highway driving Kim home from one of these many appointments and suggested Kim should contact them.  She never did…

…to be continued…

30th Anniversary Celebration: Join Us in Honoring Inta Hall

intacroppedInta Hall will be honored on Oct. 9 with the Founder’s Award for co-founding the Brain Injury Association of Massachusetts and her years of service within the brain injury community.

Hall has personal ties to brain injury. Her son Greg was injured in 1980 and her eldest son died in 1981. Both of her sons suffered brain injuries as a result of car accidents and neither of them were wearing seatbelts. Hall set her sights on brain injury prevention and began working to increase awareness of seatbelts and car safety. Eventually, she got involved in advocating for brain injury services. “I always included prevention – especially after the HITS (Head Injury Trust) Fund – I got it passed at 6 a.m. one day in 1992,” she says. However, the fight wasn’t over. As the economy slumped, money began being taken from the HITS Fund. Hall fought tirelessly to get it back. In 2014, 100 percent of the money from traffic violations and OUIs in the Commonwealth will go into the HITS Fund to benefit brain injury survivors.

Although she has since retired, Hall is still passionate about advocating for brain injury services, survivors and families and has high hopes for the future. “My hope is that it (brain injury) is an accepted disability like mental retardation is, and that congress gets more serious about brain injury services. … Millions of people are out there who need services. Disability needs to be accepted by everyone and by congress, so we can get the recognition and the services for the millions of people who need brain injury services,” she says.

In addition, Hall hopes to see more families getting involved in advocacy work. “Numbers count,” she explains. “In the 1990s, I was able to get 100 family members at a budget hearing. In the last few years I was lucky to get one or two family members. … The legislators got tired of hearing me testify all the time. We need family members to go advocate.”

When asked how she feels about being honored with the Founders Award, Hall says she appreciates being honored by her peers. “I’m sure there are many other people that are just as deserving. I hope the next generation gets just as involved as I did,” she adds.

To join us in honoring Inta Hall at the 30th Anniversary Celebration, click here to purchase guest admission.

Frequently Asked Questions About Brain Injury Resources

The primary purpose of the Information and Resources department at the Brain Injury Association of Massachusetts (BIA-MA) is to provide callers with information about brain injury and refer them to appropriate service providers to meet their individual needs. A list of professional providers is maintained and updated regularly to ensure current and accurate information is given to all callers. Provider lists are not posted online since each caller, whether a survivor, caregiver, or professional, has individual needs, and are therefore encouraged to contact BIA-MA directly to discuss their unique situation.

There are concerns survivors, family members and caregivers after brain injury, from finding a neurologist with brain injury experience to applying for public benefits for the disabled. Below are the most frequently asked questions received from callers in the Central Massachusetts region.

Q:  Where can I find affordable housing?

A: The BIA-MA maintains a list of Staffed and Shared Housing through a number of different agencies.  Some providers offer 24 hour, group home living situations, while others provide housing with limited supervision.  Adult Family Care agencies oversee an individual living with a host family, similar to foster care. Residences working exclusively with brain injury survivors are very rare and the wait list is extensive in most cases. BIA-MA can also assist individuals with applying for public subsidized housing, but again the wait list is usually several months or even years before a unit is available.

Q: How can I find a doctor or therapist with experience working with individuals with brain injury?

A: BIA-MA has a list with medical professionals in the brain injury field who provide care to survivors. We continually look for individuals, agencies, clinics and hospitals which demonstrate a history of providing services specifically to the brain injury community through site visits, conferences and other means. The most requested practitioners include neurologists, neuropsychologists, case managers, cognitive therapists and psychiatrists. Another frequent request is for assistance in locating facility based treatment, including inpatient and outpatient rehabilitation hospitals and clinics, neurorehabilitation units, substance abuse treatment and schools. Adult Day Health/Day Programs are another frequent request from family caregivers and professional providers. To access this information, call the BIA-MA Information and Resources department directly at 1-800-242-0030.

Q:  What federal and state benefits can I receive now that I am disabled?

A: A brain injury is a life-altering event for the majority of survivors. In many cases they are unable to return to their current job and have limited resources to meet their financial needs. Federal and state sponsored programs are available to many people based on a variety of factors, usually based on income and the abilities of the individual to function successfully in the community. The majority of benefit programs are accessed through the Executive Office of Health and Human Services, which oversees a multitude of divisions including the Massachusetts Rehabilitation Commission, the Department of Transitional Assistance and the Department of Mental Health. Food stamps, transportation, home modification programs and personal care attendant services, which are sponsored by or subsidized in Massachusetts, are among the many systems in place for individuals with all types of physical and cognitive disabilities. There are also frequent calls about MassHealth (Medicaid), Social Security Insurance, Social Security Disability Income and other federally sponsored financial programs.  The Information and Resources department at BIA-MA can assist with questions about where to go for assistance.