Tag Archives: #braininjuryawarenessmonth

Southeastern Region Presented 4th Caregiver Conference

DSC_0759BIA-MA’s Southeastern Regional office, along with primary sponsor Boston Medical Center HealthNet presented its 4th Caregiver Conference at the Canal Club of the famed Trowbridge Tavern in Bourne. The conference committee included several caregivers who all contributed greatly to the content and execution of the conference.

Arriving from as far away as Maine, Rhode Island, and western Massachusetts, over 120 caregivers, both family and professionals, enjoyed a day of education, friendship, and great food.

Nicole Godaire, BIA-MA’s Executive Director, welcomed the group and kept the program
running smoothly.

Speakers included representatives from the Massachusetts Rehabilitation Commission, Brain Injury and Statewide Specialized Community Services, MassHealth, Spaulding Rehabilitation Hospital Model Systems, All 4 Healing Wellness and Stress Relief, and Cape Stress Reduction & Optimal Health. Tom Hall provided the group with behavior management techniques while Attorney Juliane Soprano guided the attendees through Workers’ Compensation and Social Security Disability applications and appeals processes. Marilyn Spivack, founder of the Brain Injury Association of America, stressed the need for advocacy, and BIA-MA’s Information and Resources Senior Manager Myles Marisseau presented an overview of the services that our organization provides.

According to Sandy Topalian, manager of BIA-MA’s Southeastern Region, “many people complimented our team on the high quality of the conference offerings with comments such as: ‘What a great opportunity for all of us who really need every bit of this important information’, ‘All excellent speakers, extremely informative’, and ‘one of the best run conferences we have ever attended. Thank you for providing us with such a wonderful day’, ‘Very rewarding to spend the day with other caregivers who have been there and really ‘get it’. ‘We could vent without feeling guilty’.” Dr. Cathy Stern and Fairlawn Rehabilitation Hospital were breakfast sponsors and 16 organizations exhibited their offerings to the group. Braintree and New England Rehabilitation Hospitals and Spaulding Rehabilitation Network also supported this important event.

Mommy of a Miracle: My Challenge to You…

kristine & isabella

Before Isabella’s Acquired Brain Injury (ABI), I had no idea what a brain injury was.  I like many others never could have imaged the journey we were about to embark on.  I had heard about brain damage but didn’t know what it meant.  What I knew about comas came from television shows; however, I quickly found out that real life comas are completely different. Television comas are often portrayed as a person lying peacefully sleeping with a wrap on their head.  Real life comas are far from peaceful; there are machines everywhere, wires attached to every part of your body and the person is often thrashing around.  When Isabella was put on a ventilator I remember saying I didn’t understand because her lungs were fine.  I was then told that your brain controls breathing.  When Isabella woke up and couldn’t move I remember asking why because I knew she wasn’t paralyzed.  I was then told that your brain controls that too.  We were quickly thrown into this world of brain injuries with so many uncertainties.  I knew nothing about brain injuries.

Over the last three years, I have come to realize just how often brain injuries occur and how little people know about them.  March isn’t a month that has the world covered in either green or blue for brain injury awareness.  There isn’t a professional sports team adding the colors to their uniforms like they do in other months.  Unless you have personally been affected by brain injury you probably wouldn’t even know it was brain injury awareness month. “Brain Injury is the leading cause of death and disability in persons under 45 years of age, occurring more frequently than breast cancer, AIDS, multiple sclerosis, and spinal cord injury combined.”  Why is brain injury still a silent epidemic when it is causing this much death and disability?  In my opinion it is because we aren’t loud enough.  Our voices are not being heard.

The month of March should not be the only time that we in the brain injury community raise awareness.  We are all affected by the lack of research in how to effectively prevent and treat brain injuries.  We are all affected by the lack of funding to help support those who survive a brain injury.   We are all affected by the lack of appropriate services especially long term care. We are all affected by the lack of understanding that while our survivor may look fine, brain injury is an invisible disability.  We are all affected by lack of appropriate educational programs for our child survivors.  It only takes one person to make a difference.  Imagine what the world would be like if everyone knew about brain injuries.

What can you do to raise awareness?  Talk with your family, friends and others about those things that we know can prevent brain injuries such as wearing a helmet and using a seatbelt.  Educate your children not to ever drive while under the influence of drugs or alcohol and to not text while driving.  Discuss resources that are available to parents and other child care providers to prevent a baby from being shaken.  Remind others to always have a buddy with when swimming.  Get others involved in looking out for the signs of a concussion or a stroke.  While not all brain injuries are preventable knowing how to best keep yourself and others safe can decrease your risks.

I challenge each one of you to not only raise awareness for the month of March but to raise awareness every day.  We are the voice of our brain injury survivors and the survivors to come.  It only takes one person to make a difference.  Let that difference start with you.

Are you up for the challenge?

Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.