Tag Archives: brain injury survivor

College Bound – Wishing our Ambassadors an Amazing Experience !

We have been so fortunate to know Sean Rowell and Madeline Uretsky at the BIA-MA. They are both amazing people and have been wonderful additions to our Ambassador Program. If you have not heard about our Ambassador Program it is comprised of  volunteer speakers who have either sustained a brain injury or have a loved one with a brain injury. The speakers vary in age and experience, but all share a desire to tell their stories to help others avoid this devastating tragedy. Sean and Madeline have both been part of our are program after they sustained their injuries.

If you would like to become an Ambassador please contact us at 508-475-0032 and ask to speak with our Ambassador Program Coordinator !

Sean Rowell_SlopesCongrats Sean Rowell !!

This spring Ambassador Sean Rowell graduated from St. John’s High School in Shrewsbury and will be attending Georgetown University.  Sean began speaking for our program in August of 2010.  Sean suffered his brain injury from a snowboarding accident at Loon Mountain.

Sean has made a number of speeches as an Ambassador.  This year, Sean was a panel presenter at our Annual Conference.  He has spoken to numerous clubs and organizations throughout the state, including,  the Worcester Rotary Club, Millis High School, Wilmington Rotary Club, Marlborough Rotary Club, Chelmsford Rotary Club, Stow Parent Teacher Organization and Fitchburg Rotary Club. The Wilmington Rotary Club invited Sean to also present to their High School Interact Program.

After his accident, Sean became certified to teach for the New England Disabled Sports Program at Loon Mountain.  As a coach, Sean guides guests in the snow sport of their choice on the mountain.   Through his assistance, Sean enables the students to experience the thrills and independence of skiing.

BIA-MA would like to sincerely thank Sean for all his accomplishments and association with our organization.  We wish him the best of luck in his studies and would like him to continue to be a friend of the BIA-MA.

Madeline

Congrats Madeline Uretsky !!

This spring, Ambassador, Madeline Uretsky, graduated from Bishop Fenwick High School in Peabody and will be attending Simmons College.  Madeline became an Ambassador for BIA-MA in April of 2012.  Madeline’s brain injury happened from a car collision and then five months later a severe concussion while playing soccer.

Madeline has made numerous presentations for the Ambassador Program.  In April, she was a panel member at the Whitehead Institute’s 2014 Spring Lecture Series for High School Students.  She has also made numerous presentations at many Rotary Clubs across the state including; Lynn, Billerica, Swampscott, Billerica, Tyngsboro/Dunstable, and Manchester/ Essex.   Madeline has also presented at our Pediatric Conference and was a speaker at the 10th annual Boston Acquired Brain Injury Support (BABIS) Walk.

In 2013, Madeline’s story was featured in the Boston Globe in an article on concussions and her story is also featured in many internet sites focused on concussions.  Madeline also wrote a chapter in the book, Concussed! Sports-Related Head Injuries: Prevention.

BIA-MA would like to sincerely thank Madeline for all her accomplishments and her dedication to our organization.  We wish her the best of luck in her studies and would like her to continue to be a friend of the BIA-MA !

What Brain Injury Survivors Want You To Know

Today’s blog is compiled by The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, Mass., one of 34 BIA-MA support groups around the Commonwealth of Massachusetts. It was then published in Lost and Found, A Survivor’s Guide for Reconstructing Life after Brain Injury, by Barbara Webster, BIA-MA’s Support Group Leader Liaison. If you want more information about joining a support group, click here. 

What do  brain injury survivors really want you to know?

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem. If there is more than one person talking, I may seem uninterested in the conversation – but that is because I have trouble following all the different “lines” of discussion and it is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! and it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me, allowing me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience as well, trying not to interrupt, allowing me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory and know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time, it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. ( It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD, obsessive-compulsive disorder, but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional issue as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

#BrainInjuryAffects Campaign Update

survivorsfamilies

Early this year, we launched an exciting social media and advocacy campaign called #BrainInjuryAffects. The campaign was designed to encourage those affected by brain injury – survivors, caregivers, family members, friends and healthcare professionals – to share their stories with us and explain how their lives have been affected by brain injury. We also asked for photos. We weren’t sure how many people would participate, but our hopes were high and we have received amazing feedback. We’ve received so many submissions from survivors, family members, caregivers and professionals who were informed of the campaign during a brain injury support group, saw our posts online or who simply heard about it by word of mouth.

These stories are all incredibly inspiring and have not only inspired us, but legislators and the general public as well. Each person’s story is different – their ages vary – our youngest participant, who is a brain injury survivor, is just seven years old. Through this campaign, we have been able to share the stories and struggles of survivors, family members and caregivers in Massachusetts with the world. We are so thankful to have such passionate and generous supporters who participated in this campaign.

We are excited to share the results of the campaign with all of you soon. Click here to read some of these incredible stories, like that of Tiffany, who suffered a severe traumatic brain injury (TBI) at just 16 years old when she was involved in a serious car accident, or find out about Scott, who is still learning about his brain injury after decades of not knowing the true effects of his injury.

Look for more stories coming soon and click here to participate in the campaign!

Tips For Organizing This Spring

Woman Leaning On Washing In Basket

Spring is upon us and with warmer temperatures, longer days and more pleasant attitudes comes the desire to organize, clean and start fresh. Whether you’re a brain injury survivor, family member or caregiver, spring cleaning can help you get organized after a long, dreary winter. Too much clutter and a lack of organization can make you feel anxious and overwhelmed. Often, survivors and caregivers are so busy with doctors appointments, rehabilitation and mundane, but necessary tasks that cleaning and organization can fall to the back burner, so getting organized at the start of a new season is a great way to have a fresh outlook. Consider these tips for starting spring cleaning:

1. Sort through spring clothes. Go through this season’s clothes to make sure everything fits. Make piles of clothes to keep and give away. Use the rule of thumb that anything you haven’t worn in a year you should consider giving away to charity.

2. Pack away winter clothes. Make sure you have a few warmer items for those cool spring days, but the majority of your bulky sweaters can be packed away. Under-bed chests and storage bins are great for storing clothes that are out of season.

3. Throw away old bills, letters, etc. Sort through a mail bin if you have one, your purse or briefcase, coupon holders, etc. to throw away anything outdated that you no longer need. Paper tends to create plenty of clutter, so throwing away old items will help you feel more organized.

4. Clean your refrigerator and pantry. Take all items out and look for anything that is expired, so you can throw it away. Then, clean all the shelves and drawers before putting the food back in.

5. Sort the medications in your medicine cabinet. Look for expired prescriptions and medications you no longer need. Many communities offer “take-back” programs, so you can dispose of old medications safely. Before you throw them out, check the drug label for instructions on disposing them.

6. If you haven’t already, establish a bulletin board in your home – in a home office or perhaps in the kitchen – to serve as a place for reminders and notes, a calendar and other organizational items, which will make it easier for you to keep track of your appointments and plan out your day, week and month.

7. Clean – OK, so we know it’s not the most exciting tip on this list, but cleaning behind those dusty cupboards, on top of the refrigerator and in all of those hard-to-reach places at the start of the season will help you set foot into spring the right way.

8. Brighten your mood with spring shades. Do you have any spring decor? A specific comforter for the season? If not, go out and get some fun throw pillows in bright colors or perhaps a great piece of art. Make your home feel bright and airy for spring which will not only be great for the season, but also brighten your mood. Fresh flowers are another great way to spruce up the space in your home.

9. Do a safety check. With the temperature reaching up into the 60s and 70s, there’s no question we all want to open the windows and get some fresh air. However, window screens, which are meant to keep out bugs and debris, do not prevent falls. Each summer, the news often features a story of someone – usually a child – who fell out a window. Check to make sure screens are secure and install window safety devices like window guards and window stops. The best way to prevent falls is to stay far from windows, no matter what your age. Even leaning by an open window can be hazardous.

10. Ask for help if you need it. If you’re unable to reach certain areas or simply need assistance cleaning and organizing, ask a caregiver, family member or friend to help you.

For more information on brain injury, go to www.biama.org.

BIA-MA’s 32nd Annual Brain Injury Conference

Last Thursday, approximately 650 people, including brain injury survivors, caregivers, loved ones, professionals, exhibitors and staff members, attended our 32nd Annual Brain Injury Conference at the Best Western Royal Plaza Hotel & Trade Center in Marlborough, Mass.

Dr. Carolyn Roy-Bornstein speaks to attendees about her memoir.

Dr. Carolyn Roy-Bornstein speaks to attendees about her memoir.

Dr. Carolyn Roy-Bornstein, pediatrician and author of Crash, A Mother, A Son and the Journey From Grief to Gratitude, provided the keynote address, speaking about her book and what it was like to balance being a mother grieving for all her son lost and a physician determined to turn tragedy into opportunity. Roy-Bornstein’s son Neil was hit by a drunk driver at the age of 17 while walking his girlfriend home after a study date. She did not survive her injuries. Neil carries his with him.

Roy-Bornstein’s keynote address filled the ballroom. After her address, she opened up the floor and allowed questions and comments, which many opted to participate in. Survivors, caregivers and family members shared their own experiences and

Dr. Carolyn Roy-Bornstein signs books after the keynote address.

Dr. Carolyn Roy-Bornstein signs books after the keynote address.

offered their thanks to Roy-Bornstein for writing and sharing her story, which inspired so many of them. The video of her keynote address is available here. After her keynote address, Roy-Bornstein took the time to meet with conference attendees and take some photos, as well as sign books.

Annual Conference 2013 021

Exhibitors met with attendees throughout the day.

Throughout the day, brain injury survivors, caregivers, family members and professionals were able to meet with exhibitors, visit their booths and learn about their products and services.

Attendees had the opportunity to participate in a total of three workshops during the day. Workshops covered various topics including aphasia, substance abuse, caregiver fatigue and alternative therapies such as yoga and art. Professionals, survivors, caregivers and family members were able to participate in workshops they found pertinent and helpful.

This year’s conference was once again a success. We would like to thank those who attended, as well as our sponsors whose generosity helped to make the event possible: Braintree and New England Rehabilitation Hospitals, Massachusetts Rehabilitation Commission, Spaulding Rehabilitation Network, Fairlawn Rehabilitation Hospital, Eliot Community Human Services, Inc. and Vinfen.

What was your favorite workshop or part of the day? Share in the comments! Do you want to view more photos from the event? Visit the photo album here.

#BrainInjuryAffects Scott Doane

Although the official Brain Injury Awareness Month is over, our advocacy and awareness efforts are not. Our social media and advocacy #BrainInjuryAffects campaign has been so successful that we have decided to continue it. Through the campaign, we have spoken to and met so many incredible survivors, family members, caregivers and brain injury professionals and have been able to share their stories on Facebook, Twitter, this blog and our website. We hope you’ll continue to share your stories with us! Today, we’re sharing brain injury survivor Scott Doane’s story.  

AFFECTS 2013

It was 1967 and Scott Doane was just seven years old, riding with his father and sister in their station wagon when their vehicle got broadsided by an 18-wheeler whose brakes gave out.

“My sister saw the whole thing,” Scott explains. A bystander, who turned out to be a marine and EMT, ran over to help. Scott’s sister was screaming “Where’s Scott?” which made those helping at the accident scene look for him. They saw tufts of Scott’s hair behind the front seat where he was pinned.

“The marine saw that I was unresponsive and choking on my tongue. He began to give me mouth to mouth and saved my life,” he says.

Scott, his sister and father were taken to the local hospital. His sister received 20 stitches and his father had a collapsed lung and broken ribs. Scott needed more care so he was taken to Columbus Children’s Hospital in Ohio where doctors discovered he had a significant frontal lobe brain injury and his right side was paralyzed. To keep the brain swelling down, doctors gave him penicillin and put icepacks all around him. Scott was in a coma for three weeks and was not expected to survive. Despite the doctors’ beliefs, he did.

After three months, he was finally released from the hospital. He was paralyzed on his right side and spent six months in a wheelchair. Scott was given no formal rehabilitation for his brain injury other than regular checkups and working with his parents at home. Their family moved out of Ohio and after that, there was no follow up on his brain injury, leaving Scott with many questions.

Just three years ago, Scott found himself still desperate for answers about the accident and his brain injury, so he asked his father to give him his medical records so he could find out more. He went to get a baseline MRI, started seeing doctors and getting tests done to find out more about the extent of his injury.

Continue reading Scott’s story.