Tag Archives: traumatic brain injury

Study for Veterans with Mild TBI Needed for Clinical Research Study

Researchers at McLean Hospital are in the process of assessing  whether a dietary supplement called citicoline can reduce the symptoms associated with mild traumatic brain injury (TBI) and PTSD. If you’re interested in participating in a study and experience these symptoms, you could be paid up to $470 for your time and participation.

You may be eligible if you are:

1. 18-35 years old

2. Returned from active duty in the past 3-24 months

3. Are free of any serious medical problems

4. Are available for weekly visits for the next nine weeks (treatment period is eight weeks long)

If you are interested, please contact McLean Hospital at 617-855-3653 or at brainstudy@mclean.harvard.edu.

Annual BJ Williams Road Race: The Story Behind Team Ryan

ryannewTBI Survivor Ryan Farrell is the inspiration behind TEAM RYAN, a group of Ryan Farrell supporters who participate in the Annual BJ Williams Walk & Run Road Race each year. Today, Ryan shares how her family got involved in the race and how their motivation for participating changed after she sustained her injury. 

My sister was a senior at Western New England College out in Springfield at the time of my injury. BJ Williams, now manager of prevention programs at BIA-MA, hosted fitness “boot camps” at the various colleges in the Western Mass. area, and my sister and her friends would attend the weekly work-outs. It was probably the middle of March ’10 when he told them that every year he hosted a road race to benefit the BIA-MA, so, they were planning on participating before I sustained my traumatic brain injury (TBI). 

Team Ryan

Team Ryan at last year’s Road Race.

After I suffered my brain injury, this great group of girls formed TEAM RYAN! The 2010 race was on a sweltering July day. Team Ryan, better known as the Pink Ladies, decked-out in their homemade, hot pink, tie-dyed T-shirts, partook in the race, and then immediately came to Spaulding Rehabilitation Hospital to celebrate, not only all of the improvements I was making, but also the fact that they did not pass out from the immense heat!

I, along with my  wonderful Spaulding roomie, also a TBI survivor, were finally able to participate in last year’s race! So, that was two summers after my accident. Finally being able to “put a face” to Team Ryan was the best feeling ever! It was beyond incredible to see all the participants, walking or running, in support of such an incredible organization. The Pink Ladies had grown immensely, and we had to change our nickname to the Pink People, for we had not only increased in number, but the team now had male participants!!!

The 6th Annual BJ Williams Walk and Run Road Race will be on Saturday, September 14, 2013 in Longmeadow, Mass.  The event will feature a 5K Fun Walk and a 5K Road Race, all to raise money for the Brain Injury Association of Massachusetts and the Joe Andruzzi Foundation! To register now, click here. ‘Like’ the Annual BJ Williams Walk and Run Road Race on Facebook!

Mommy of a Miracle: It takes a team to recover

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Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website. To contact Kristin, tweet @KristinOlliney.

Isabella’s journey post acquired brain injury (ABI) has been one filled with twists, turns and bumps along the way.  Having a team that stands by Isabella and I has been invaluable.  I have learned that it takes a variety of people all having the same vision to help move forward in recovery.  Every member of our team (both past and present) has taught me something. Trust is essential and everyone has to have the same vision. Isabella has so much fight and determination. I want a team that is willing to keep pushing her forward. 042

When Isabella first got sick with sudden acute encephalitis, we had a team that was given to us. We didn’t have the option to choose – it was whoever was in the PICU, relevant specialties and rehab.  As we progressed forward in recovery, I started to learn about the team approach. That first year of recovery, I felt like I was being asked to settle for Isabella.  She was over medicated, having difficulty walking and struggling to talk. I was told that this could be as good as it gets and that I needed to accept that. I refused to settle because I knew she could go further with the right team. I researched doctors, hospitals and therapists. I sought out second opinions, I met with rehab facilities and I talked with everyone about my vision for Isabella. I slowly was able to transition her care over to our existing team.

Our team consists of:

  1. 1.       A medical team, including a pediatrician, neurologist and immunologist.  I initially met with our neurologist for a second opinion. I was not looking for a miracle cure because let’s face it, there isn’t one.  However, I knew the life Isabella had of being over medicated, seizure-filled and out of control was not the life she deserved. The neurologist was able to help get Isabella back on track by taking a more conservative approach to medication and listening to what I saw for Isabella.  She was able to help me find an appropriate pediatrician, one that works with complex children like Isabella and referred me to an immunologist who has taken a proactive approach with her. These three members of Isabella’s team are key in keeping her medically stable.
  2. 2.       A therapy team, which consists of a physical therapist, occupational therapist and speech therapist. We have had many therapists and it takes a variety of them to keep Isabella moving forward.  Isabella initially woke up out of her coma unable to even lift her head never mind move her arms and legs.  Isabella could only put two to three words together and she was unable to even hold a crayon. Today, Isabella runs, hops, jumps and even rides a bike.  She has become a lot more verbal and puts together much longer sentences. She also gets herself dressed on most days and is great at drawing. It takes a lot of work in therapy and at home to ensure that she not only continues to gain new skills, but that she retains them as well.
  3. 3.       Our behavioral team, which consists of a behavior consultant and behavior monitor. They were able to help me help Isabella. When they first started, Isabella couldn’t even go outside without a panic attack and she was violent. I was at the end of my rope with what to do because nothing was working. Isabella has no control over her mood, behavior, emotions, etc., so the behavioral team helped me learn all the ways to help her before she escalates.  When Isabella loses control, there isn’t much I can do. However, we have put many tools in place to help us both.  Mine and Isabella’s relationship is so much stronger due to the work we have all put in.
  4. 4.       Our dog therapy team consists of an amazing woman and her little dog Charlie. They just recently moved away, but before that they came to visit every week.  In those visits, there was no brain injury. Isabella was just a little girl who loved “her” Charlie.  They helped Isabella learn how to be gentle, have empathy and Charlie helped Isabella through some tough times, including hospital stays.
  5. 5.       Our educational team consists of a fantastic special education attorney who is helping me navigate the school system. I know what Isabella needs and she knows the law. Together we are working on getting Isabella transitioned to school for the fall. It was important to have an advocate who was willing to help think outside the box because Isabella is so complex.  I am hopeful that together we can get Isabella the appropriate education.

In addition to these team members, we also have the many nurses who help Isabella get through hyperbaric oxygen therapy (HBOT) and child life specialists who help with infusions.  Isabella gets infusions every other week because she also has an immune deficiency. Every team member plays an important role in Isabella’s recovery whether it is keeping her medically stable, moving forward in recovery, getting the appropriate education or being able to get through medical procedures. To get the team we have I had to change doctors, therapists and hospitals. Change is scary, but it is necessary to keep moving forward. I have made major changes in Isabella’s care. These changes have made the difference between her recovery moving forward and standing still.

Meet Ryan: Q&A With Brain Injury Survivor Ryan Farrell

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Ryan Farrell, a brain injury survivor and college student, who suffered a severe traumatic brain injury (TBI) during a  cheerleading exhibition in 2010. Ryan currently shares her story with teens through BIA-MA’s Gateway Program, often volunteers at BIA-MA events and writes blogs for us about her experiences post-injury. Today, Ryan sits down with BIA-MA and talks about how she stays so positive and what has kept her moving forward, even while dealing with challenges and setbacks.

1. You’ve been through so much as a result of your brain injury and come so far. Despite the challenges you’ve faced, how did you stay so positive and how do you continue to do so even on days that might be really difficult?

 From the moment I was actually able to grasp what had happened to me, my main commentary was basically: “OK, so how can I ‘make it better’?” I can honestly say that I have never, nor do I ever plan to wallow through the “WHY ME?!” mentality – I don’t have time for it!

I have always been a “sunny-side-up,” “glass more than half full” kind of individual. Thinking negative thoughts would use up too much time and energy – time and energy I should be taking advantage of to get me closer to my dreams and aspirations.  

2. Do you have a support system behind you and how have they helped you?

I have the strongest, most amazing support system behind me! My family – immediate & extended – is the main reason why I am able to do all of the things I have done, and will continue to do post-injury. In the initial months of rehab, it was my family members – parents, sister, aunts, uncles and cousins – who were at Spaulding Rehab Hospital (where I received in-patient therapy for 11 weeks), every single day. Whether they were rooting me on in physical therapy when I was relearning how to sit-up in my chair, or during speech therapy when I was determined to try and remember lists of names or places to exercise my short-term memory, they were the “constant” that I had in my day-to-day life. When everything else in my life was so out-of-sorts, my family kept me determined and sane!

3. What was your greatest struggle post-injury and how did you overcome it?

My greatest struggle post-injury was not anything for which there was a specific “treatment.” My short-term memory was basically non-existent throughout the first months after my injury. I could not remember the most trivial things, such as what I had eaten for breakfast, even if I was asked five minutes after finishing! My short-term memory is still something that I struggle with at times, though not as severely as I did in those first months. I have to be extra-vigilant and make sure I am persistently paying attention to make sure I do not “miss something.”

4. What was your greatest success?

My greatest success, thus far, has been returning to college in fall 2011. To overcome one doctor’s prognosis of, “Your daughter is so severely injured, that at the very best she will only ever walk with a walker,” has been the biggest barrier that I have catapulted myself over!

This fall, I am entering my senior year, and will be enthusiastically concluding my undergraduate education in spring 2014. Like I said, my greatest success thus far has been returning. Ask me again, 10 months from now, and I will state, loudly and proudly, that my greatest success has been COMPLETING!!!

5. What do you want to tell other survivors?

I want to tell other survivors everything that I have believed, and that has been told to me throughout these past 39 ½ months. YOU CAN DO ANYTHING YOU SET YOUR MIND TO, and, the only person who can set limitations on you, is you!

6. You share your story as part of our Gateway Program. What is the best part about sharing your story with others?

Public speaking has always been “my thing.” The rush I experience when I am standing in front of a group, large or small, is inexplicable. Through the Gateway Program, I am able not only to fulfill my love of this, but I am also able to positively impact and influence the teens and young adults whom I’m speaking to. The absolute best part of sharing as a part of this program occurs after I’ve shared my story. At the end of my presentation, I always inform the teens and young adults that it is now their time to speak – they can ask me questions, make comments and they don’t even have to pertain to my story. When the brave, “ice-breaker” of the group asks the first question, it allows the other individuals in the room to feel comfortable asking a question, too!

For more information on brain injury, go to www.biama.org and to read more of Ryan’s posts, click here.

For Brain Injury Survivors: It’s OK…

wordleBrain injury survivors and caregivers alike often have high standards for themselves and their rehabilitation. The challenges survivors face can often be overwhelming and while there are many good days and achievements during rehabilitation, there can also be bad ones that can overshadow the positive moments. Sometimes we all need to take a step back and put it  in perspective. We’ve come up with a list of things to remember inspired by so many of your Facebook comments over the past month!

So remember, It’s OK….

1. To have bad days sometimes. Not every day is going to be filled with successes. You will have a bad day or a bad week every now and then and it’s OK to be disappointed, but don’t let that overshadow all the great things in your life.

2. To miss your life pre-injury. Life post-injury is different and challenging and can be often overwhelming. It’s OK to miss how things used to be and give yourself time to mourn the life you had, but try not to focus on it. Focusing on your successes and rehabilitation can help you move forward.

3. To not want to have to explain what a brain injury is all the time or convince others that just because you “look fine” doesn’t mean that you don’t have a brain injury. Remember, many people don’t know what a brain injury is or how it can affect someone. People may say, “Well, you look fine/normal” so you must be OK, which can be extremely frustrating. Do your best to educate those around you about brain injury, but don’t feel bad when you get tired of explaining. When you get frustrated, talk to those who DO understand and find support among other survivors and caregivers.

4. To be different. Life changes post-injury and you’ve changed post-injury, but that doesn’t mean you shouldn’t embrace who you are and who you’ve become. It is OK to be different and to accept yourself.

5. To get frustrated with yourself, your progress and life circumstances sometimes. It’s normal.

6. To feel like no one understands sometimes. If you’re surrounded by friends and family who don’t truly understand brain injury and don’t know what you’re going through, it can be isolating. While you might be the only one in a group who knows exactly what a brain injury is because you live it, doesn’t mean there aren’t support groups (online and in person) full of people who DO know what you’re going through. Our Facebook page is a great place to find some of these amazing people who will help you feel not so alone.

7. To not want to hear how “lucky” you are. Those who don’t understand brain injury will often tell you how lucky you are to “be alive” that it “wasn’t worse,” etc. It’s OK to not want to hear these comments and it’s OK to tell someone that those comments can be frustrating or hurtful to a survivor who doesn’t necessarily feel so lucky as he or she works through rehabilitation and to regain skills he or she lost.

8. To ask for help and accept it if you need it. Some people don’t want to ask for help and are afraid to burden others, while other individuals don’t want to accept help in fear of giving up some of their independence. Many caregivers and loved ones would LOVE to help and would be more than willing to offer assistance, all you need to do is ask. However, if you don’t want help it’s OK to politely say no.

9. To give yourself time. Time to heal (physically and emotionally). Time to accept yourself and your life. Time to get to where you need to be.

10. To need a cheerleader, support system and encouragement. Ask your loved ones for encouragement and support! Everyone needs a cheerleader!

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.

“Staycation” Tips for Brain Injury Survivors & Caregivers

We recently did a post on vacation tips for survivors (here), so today, we’re offering some “staycation” tips for those who need or want to stay close to home.

While going away for a few days to a week in the summer can be a wonderful opportunity for survivors and caregivers to get away and relax, it’s not feasible for some. Many survivors and caregivers don’t want to be far from home or are simply unable to leave a loved one alone or in the care of a family member or friend. If you’re looking to do something special this summer and need to relax and recharge your batteries, but don’t want a lot of hassle, consider planning a staycation.

Staycations became especially popular during the economic downturn, but nowadays, even as the economy improves little by little, they’re just as popular as ever. Consider these tips as you plan your staycation.

1. Take at least a week off. Whether you’re a survivor or caregiver who works part-time, full-time or even just volunteers on an as needed basis, plan to take a week off. You don’t have to be going away for a beach vacation to take some time off and take care of YOU.

2. Plan day trips you wouldn’t normally take. During the year, your schedule is likely full of doctors appointments, rehabilitation and other tasks, so appreciate a full week of fun trips and activities you wouldn’t normally participate in. Go to the zoo, aquarium, visit a sleepy beach town for the day or go to a museum. Whatever you decide, make sure it’s relaxing for you and/or the survivor or caregiver in your life.

3. Be Mindful of Your Surroundings. Although you’re thinking of having a staycation, it’s important to be mindful of what certain locations might bring. If you’re planning a trip as a survivor or with a survivor, keep in mind that there may be too much stimulation and noise at an amusement park, for example, but a museum will likely be quieter and more enjoyable. Talk to the survivor in your life to see what he or she thinks. Also, make sure to plan breaks throughout the day to avoid fatigue.

4. Relax. Don’t plan appointments, classes or other mundane tasks during your staycation. On days you don’t plan any activities, RELAX. Read that book you’ve been dying to read or try out a new relaxing activity like yoga or meditation. Appreciate days without any required activities and simply enjoy a time that is quiet and peaceful.

5. Treat yourself. During the rest of the year we try to exercise, eat healthy, get an adequate amount of sleep and do our best to be as health conscious as possible. During your staycation, treat yourself a bit. Have a dessert you might not normally indulge in (as most people do when they’re on vacation), sleep in, take a bubble bath or go get a massage. Treat yourself to something you might not normally any other day.