Mommy of a Miracle – Too good to be true

kristine & isabella“Too Good to be True”

March was Brain Injury Awareness month.  While those within the brain injury community are aware of that, most of the country is not.  Cougar Town, which stars Courtney Cox, Busy Phillips and Josh Hopkins is a show that airs on TBS.  In March, Cougar Town aired an episode titled “Too Good to be True”. A member of my support group mentioned that the episode was offensive to brain injury survivors.  I had never seen this show before so I watched this episode to find out more.  The episode was about a man named Tom, who lied to his daughter about his life including that his friend Grayson had a “head injury” from hockey.  As a parent to a child with a brain injury, I was upset by what I saw.  While I understand that television shows are made to entertain and certain material is subject to interpretation, I was offended.  I know Cougar Town and Hollywood’s stance would be that I shouldn’t watch it then.  While I can respect that, I hope together as members of the brain injury community we can help educate others including Hollywood on brain injuries.

During the episode, Grayson, who was supposed to pretend he had a brain injury said “So, Tom told his daughter that a head injury turned me into a simple, good-natured man-child who needs help dressing himself.  That’s humiliating.”  This statement may be true for some brain injury survivors but not for others.  Not all survivors need help dressing.  Some survivors have minimal side effects while some face life altering changes.  For those that do need help getting dressed I am sure that it can be a humiliating experience.  Isabella could dress herself at 4.5 years old prior to her Acquired Brain Injury (ABI).  Now Isabella needs help getting dressed and that makes her feel like a baby.

As the episode of Cougar Town came to an end, the characters all had lunch at Grayson’s pub. Tom’s daughter said and I quote “The food at Gray’s pub even tasted like it was made by someone with a head injury.”  I found this statement to be extremely hurtful and highly offensive.  Many brain injury survivors go on to be productive members of society.  They go on to have careers and families.  I am not sure how anyone could tell whether food was made by a brain injury survivor or not.  Food can be horrible regardless of who makes it !

In my opinion, this episode of Cougar Town perpetuated the stereotypical brain injury survivor as one who is stupid and child like.  Brain injury survivors are some of the strongest, most amazing, most brave and insightful individuals I have ever met. They have survived what should have killed them.   Many brain injury survivors spend the rest of their life trying to regain what had been lost because of their injury.  They are forced to deal with the physical, psychiatric, psychological, emotional and behavioral effects of the damage to their brain.  They are abandoned by a society that sees them as “fine”.  They are isolated by family, friends, co-workers and others who have no idea the extent of the challenges that they live with daily.  This episode just adds to the misperception.  We can change the way Hollywood and the world perceives brain injury by continuing to raise awareness and by educating others.

Guest Blogger, Kristin Olliney, is the mother of 8-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.

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.

Race for BIA-MA – 42nd New Balance Falmouth Road Race

falmouth road image
More than 11,000 runners will gather in Woods Hole for the 42nd New Balance Falmouth Road Race. The 7.1 mile run is regarded by the many runners who participate as a truly special race. The scenic, seaside competition has become a staple in the Cape Cod community and is recognized as one of the best, most enjoyable road races in New England.

The Brain Injury Association of Massachusetts has five non-profit entries for runners who wish to participate and fundraise at this event. Team members must commit to raising a minimum of $1,000.00 by August 25th, 2014. As a member of Team BIA-MA, all runners will receive:

  • Team Dinner on race weekend
  • Team Singlet
  • Personal Fundraising page through BIA-MA’s website
  • Access to running tips and articles
  • Team emails with fundraising ideas and sample letters
  • Any team member who raises over $2,000 will receive a one year Professional Plus BIA-MA membership

To download application please click here

To join Team BIA-MA, please email a completed application by April 14th to tfernandez@biama.org or

Mail or fax completed application to:
BIA-MA
30 Lyman Street, Suite 10
Westborough, MA 01581
Fax: 508-475-0040

26 Miles for Mom

IMG_0241

Jonathan Korhonen will be running the 2014
Boston Marathon to bring awareness to brain injury in support of his mother.

On August 14, 2013 Annette Korhonen had a stroke, fell and suffered a traumatic brain injury. Over the past several months, she has endured time in the ICU and currently is in extended care in rehabilitation. She has battled through four brain surgeries, fought off cranial meningitis and endured a laundry list of procedures and issues as a result of her stroke and fall.

With her family by her side every step of the way, her son, Jonathan, has decided to run the 2014 Boston Marathon in her honor. Jonathan has always been an avid runner and his mother has always been his biggest supporter. He was in the midst of training for a marathon to qualify for Boston when his mom suffered her stroke. In order to run in the qualifier, Jonathan had to make the difficult decision of taking time away from being with his mother during the early stages of her care to run in a race over 8 hours away. He knew that she would want him to continue to pursue his dream of running the Boston Marathon. He qualified for Boston with thoughts of his mom on his mind, and quite literally, on his heart thanks to a specially designed racing jersey with her picture on it.

Jonathan is using this opportunity to run the 2014 Boston Marathon to raise money in support of his Mom as well as a way to raise awareness for the needs of the brain injury community. As he puts it, “It has been made clear that Mom’s recovery will require long-term care with significant and expensive costs that will not be covered by insurance. While I pray for Mom’s ability to recover, I also pray that the expense of care won’t prohibit us from giving Mom the opportunity to get better.” He has set a lofty goal of $50,000 and has committed to donating 50% of all the money he raises directly to the Brain Injury Association of Massachusetts. Jonathan and his wife chose BIA-MA in part from a previous professional interaction Jonathan’s wife had with BIA-MA’s Information & Resources Department: The resources provided, whether it was housing options or educational materials, were always helpful, concise, and concrete. The best part was that the direct person she spoke with always followed up with an email a few months later to ensure that the resources were useful and to offer another helping hand if needed. BIA-MA’s robust advocacy efforts and the widespread footprint of their support groups is also one of their best features. “We are confident and happy to say that Mom will benefit from their resources and programs at some point throughout her journey.”

Stay tuned for our Facebook, Twitter and email updates regarding Jonathan’s training and marathon updates.

Brain Injury “Rules” in Western Region Office

Typically, when a Brain Injury Survivor or their loved one calls the Brain Injury Association of Massachusetts (BIA-MA), he or she is hoping to find out information about community-based services, potential rehabilitation or housing opportunities, the location of support groups or even just needing to talk to someone who understands what is going on in his or her life.

What these individuals may not realize, though, is that the person that is connected with them on the other end of the phone line has a high probability of being a brain injury survivor. Therefore, the people that are available to provide information and resources have firsthand experience with brain injury themselves. Many who aren’t survivors of brain injury have loved ones who are.

One office, in particular, the western region office in Pittsfield, Mass., is staffed completely by survivors of brain injury, two of whom were not diagnosed until many years post-trauma.

“On a snowy day in 1992, I was traveling to Lake Placid from Pittsfield for work when I was hit by a truck,” says Western Region Manager Suzanne Doswell. “For those of us with closed-head injuries, if we have other problems, which I did, the medical community deals with those first on a triage basis. I was not diagnosed with a brain injury until four years later.”

Helen Stewart, a longtime psychiatric nurse, suffered her brain injury at work when she slipped on some uneven pavement walking into a work meeting with her colleagues. “I don’t remember much about it, but I ended up being discharged and driving home that night,” says Helen, Information and Resources Outreach Specialist. “After a few days, my colleagues realized I was acting different and my boss told me to stay home. I ended up buying so many pairs of nice black pants because I knew I needed them to go back to work. I couldn’t figure out why I had so many pairs…it’s because I kept forgetting that I already ordered them.”

Scott Doane, the Western Region Office Administrative Assistant, suffered his brain injury in a car accident in 1967 at just seven years old.  He suffered significant frontal lobe damage and was paralyzed on his right side, slipping into a coma for three weeks. He found himself wanting answers to questions he’d had throughout his life about his brain injury and the car accident that caused it. He had been working as a case manager in human services for the majority of his career and worked with many not unlike himself.

These three individuals have one thing in common: they came to BIA-MA through the Berkshire Brain Injury Support Group (BBISG) as a facilitator, or support group member.  Suzanne began her affiliation with the group in 1994, while Scott joined the support group after frequenting the BIA-MA western office nearly seven years ago. Helen, after strong advice from her neurologist, came quietly to the BBISG.

Jeff Robinson, the Western Region Office faithful volunteer, is one of the founding members of the BBISG—when his mother, searching for answers about her son’s TBI, joined together with other parents of brain injury survivors and created the now longest running support group in Massachusetts. He volunteers four days a week at the office and assists with events.

“I think it’s apparent when we talk on the phone. I will say, ‘I understand because all the people in this office have brain injuries.’ Then, you hear them sort of sigh in relief. Their whole demeanor sort of changes on the phone,” says Suzanne.

“It adds validation. Once you give them that permission that it’s okay to share stuff, it’s like, Boom, our conversations then go for 30 minutes to an hour,” says Scott. “I think it reinforces that I know what I’m talking about because I’ve been there before.”

“And that is the rule rather than the exception when you’re talking with survivors,” says Helen.  “I think our office is a pretty talented office. I was a nurse for my career, Scott was a social worker—we all add something to the office dynamic. Scott and I could both participate on a different level knowing our shared backgrounds around the note of, ‘maybe I can use my experience to help transform other lives.’ We could integrate our own personal experience with the idea of helping others.”

“We have this extraordinary team. One day, one of us may be having difficulty with cognitive issues, or may have had a difficult night of sleep, the others pick up on that and we know we need to do work to pick up the slack that day,” says Suzanne.  “When someone walks through the front door, none of us hesitate to help that person. It’s not just one person who stands out as the optimum person in the office—we’re all better together, helping survivors of brain injury every day.”

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.

#BrainInjuryAffects – Lindsey Bannish – Granville, MA

img_6251 (3)Lindsey Bannish sustained her injury from multiple concussions due to sports injuries, car accidents, and hard hits.

In 2008, I was diagnosed with post concussive disorder and chronic migraine following a sports related injury. I had multiple head injuries in my youth (from sports) that were never treated and after meeting with my doctor, we realized my total tallied to 5 concussions. However it wasn’t until then that I really had noticed the change. My classes became difficult, my concentration and focus worsened and I began feeling like I couldn’t remember things (all of the time). I struggled with reading and typing (things I had never had a difficult time with). I had always been a good student but my grades quickly dropped and I realized that it took me longer and longer to get through material. It had been suggested that I take time off from school; however I was stubborn and didn’t understand the severity of my situation. Honestly, I was more upset with the fact that I couldn’t compete in athletic events at the time. Since 2008, I have been diagnosed with 5 more concussions, bringing my total to 10. I have had to stop playing almost all of the sports I’d played my entire life, had to learn tricks in remembering simple things, and had to hear far too many people tell me that I couldn’t do the things that I loved any more. I thought that I wouldn’t be able to go to college. I thought that I wouldn’t ever have a day without a splitting migraine, intense nausea or dizziness that makes you want to fall over. I thought that I would never feel in control of my body again.

For the past 5 years I have been learning to live with a neurocognitive disorder and lingering post concussive symptoms. Honestly, as difficult as it has been, I think it’s made me stronger. Now, I am finishing up my undergraduate degree in Neuroscience at Mount Holyoke College. I am coaching ski racing (my favorite sports that I had to give up) and I am exploring the world of non-contact athletics. I still struggle to remember things and have had to learn new techniques such as drawing, rhyming or learning information to certain beats or oscillations. I am now interested in pursuing a degree in medicine to help others struggling with brain injuries. Hopefully one day I can use my experience and insight to help others. On the outside I may appear to be an average college student. But on the inside I am a Brain Injury Survivor.