Newsletter – March 2011

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B.R.A.I.N.
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March Newsletter 2011

recent group
Typical turnout for F.B.I. meetings on Thursdays

Featured Articles
Story of Survival:
Scott Sefcik
Never Say Never!
Note From Our Founder
Quick Links

 

 

Think Tank workshop sign up here
Dear Friends,

 

Each month I contemplate what I should tell you in our monthly newsletter. Then the time comes and I have to limit what I tell you as I am exploding with exciting events and remarkable stories of survival. So, let me tell you what has been happening since February.

 

Our newsletter membership has been growing since 2010. In January we have had 48 new members, in February, 38 and since March 6, 12 new members. This is a total of 98 new people who are interested in what we are doing in B.R.A.I.N.!  Amazing!

 

Our fearless founder, Sue Rueb, has attended the VA health fair workshop, visited families, prepared talks for radio shows and can be found talking to strangers at the nail salon who since have become our friends!

 

In February, our F.B.I. group was fortunate to have Don Baune, a neurochiropracter speak to the group, and Stefanie Davis, a graduate student in the Communicative Disorders Department at CSULB presented a lesson on breathing for relaxation. We all loved it and Stefanie will be back again to remind us all to breathe and to be mindful of our posture too.

 

Two graduate students at Chapman University have been collecting data on the impact the F.B.I. group has on the members lives. A special thank you to Megan Boudreau and Jennifer Carr. They have followed both the volunteers and the survivors since January on the impact this group has on their ability to socialize and feel a part of things. They are presenting this data at the California Speech and Hearing Association (CSHA) Convention on Saturday March 26, 2011. They will present the data to the F.B.I. group on March 31.

 

Susie Strichard, who was featured in February’s newsletter will be given the Consumer of the Year award from the California Speech and Hearing Association (CSHA) on Saturday March 26th at the Los Angeles Biltmore. She was selected out of 10 districts in CA as someone who has defied the odds and makes this world a better place. Congratulations Sue! We are so proud of you!

 

Free speech, language, hearing, memory and swallowing screenings took place on February 24th at Precision Rehabilitation in Long Beach. The Chapman University graduate students in Communicative Disorders participated in the event. Over 25 brain injured adults attended. Fourteen of them returned the following week for the Balance Screening. Thank you to the owners, Manjiri Dahdul and Christy Malonzo for opening up your center for these events.

 

In closing,  let me tell you about the way B.R.A.I.N. networks and mobilizes quickly to help families in need.  A couple of weeks ago, the B.R.A.I.N. hotline received a call about a young man who was in the hospital with a newly acquired anoxic brain injury. The very same day, a colleague of mine who owns a private pediatric practice in Speech Therapy contacts me and requests information about how to find a brain injury support group for the parents of this very same man.

 

Now, this all happened within an hour of each other. What do you call this?

 

I can only say that it is not a coincidence, it is something bigger. So by the beginning of the new week, both Scott and Sandy Sefcik, myself and Sue Rueb all visit this young man at the hospital. I still don’t know how Scott heard about it but he was there, providing hope to strangers about their son.

 

Now that is networking!

 

Be well and come visit us at F.B.I. at 1000 N. Studebaker Road on Thursday nights between 4:30-6:30 p.m.

 

Sincerely,

 

Angela Mandas
F.B.I. Facilitator

My Story

as told by my mother, Sandy Sefcik

scott
Scott Sefcik

My son Scott was just 20, when he had his motorcycle accident on July 7, 2007.  Scott’s injuries included a TBI (Traumatic Brain Injury), spinal cord injury, broken bones and lack of oxygen due to internal bleeding.  Scott went through several surgeries and while his physical body was healing his brain was not waking up.  The doctors had encouraged us to withdraw life support at 5 months because of the swelling in his brain and the fact that he was not waking up from the coma.  The physicians gave us the most dire prognosis, that he would never wake up, walk, talk or function again.  He remained in a coma for 8 months. Scott woke up at the beginning of the ninth month. Scott surprised us all when he woke up and spoke his first word, “bye”  to his sister on the phone.  He was changing TV channels and slowly emerging and returning to us.

 

Scott came home to live with us approximately 3 years ago.  While the adjustments have been challenging, we find joy and wonder that he is still alive and with us.  His sisters are very helpful with Scott’s daily care and stimulating him with conversation and jokes, a bit of teasing and laughing.  They play games and encourage him to try to do things for himself and express his thoughts more clearly.

 

Scott is determined to walk again and find out what his new dreams are and pursue them with all that he can.  He is highly motivated to be all that he can be as he remembers more and more of the pre-accident life he had.  As a parent, I see the struggle and challenges that he has and while I want to do many tasks for him, I recognize that I must let him struggle to regain the skills he once had.

 

Scott has been accepted into and is attending Coastline Community College Acquired Brain Injury Program.  He gets up at 4 am to catch a bus at 6:15 to arrive and start classes at 8:30 am.  He attends classes for 4 hours and arrives back home around 2pm.  He works his brain very hard and when he arrives at home he takes about a 2 hour nap before getting up and tackling homework and dinner. The journey has been long, but we know that Scott is working harder than we are. We have learned to define a new normal in our busy lives.

Never Say Never

by Angela Mandas, MA CCC Speech Language Pathologist

 

Just when I think I have seen it all in regards to brain rehabilitation, along comes a woman who tells me her brother had a head injury and he is now 5 years post accident. She tells me that he has been laying in a bed in a local hospital and the doctors have called him “vegetative.” She asked if I would visit with him and give her my opinion of his brain injury.

 

So I did. I met the sister at the hospital and she introduced me to her brother. I looked at him and he looked right back at me with his one eye. (He lost his other eye in the accident). They say the eyes are the windows of the soul. I must confess to you all, that that is true. This man was awake, alert and thinking. I then found out that he could follow simple directions with his non affected arm, he could write his name, and he was able to understand conversation. The joy I had seen on the sister’s face was priceless. This brother of hers was not in a “vegetative” state but was in an almost “locked in” state, as the physicians and nurses think that he does not understand nor follow directions.

 

The best part of the vist was when the respiratory therapist placed his speaking valve on him and proceeded to tell me that “he cannot talk.” This man with a head injury did indeed have trouble forming his tight, retracted mouth, with limited mouth opening. However, he did speak that night! We rejoiced and also shed tears.

 

What I learned once again is that people who have suffered head injuries and strokes do not lose the ability to think. Conversations still occur in their brains and they are trapped. For us who can easily speak, it would be horrific to be told you can’t speak when in your head, you are saying “you don’t know me” and “yes I can”.

am and sue

From the Founder of B.R.A.I.N.

 

February was a very busy month and March is turning out to be much of the same.  We are blessed at B.R.A.I.N. to have so many friends and interested partners to share in the vision of a campus for brain-injured adults.

 

The month started out with B.R.A.I.N. being featured on the KBRT radio show, Talk From The Heart.  Dr. Earl Henslin shared the show with me speaking about the importance of diagnosing a brain injury and receiving appropriate rehabilitation.  Dr. Henslin will be speaking at Think Tank 2011 and we were able to talk about the event on the air, as well.  Thanks, Rich Buhler, for asking me to come on your show.

 

I attended one day at the Medical Design and Manufacturing Show in Anaheim and our B.R.A.I.N. sign and brochures will be featured at the next three shows in different cities of the U.S. thanks to AMT Advantage Manufacturing Technologies.  Thanks, Dave Parsons.

 

We have worked to create a new brochure for B.R.A.I.N. that will be ready to hand out at the California Speech & Hearing Association Conference March 24-26 and at future events.

A new T-shirt was designed this month for B.R.A.I.N.  You will be able to purchase them at Think Tank 2011.  Thanks, Alex, Jana and Sanctity Screen Printing for the great outcome.

 

I met with the director of the Orange County Rescue Mission, Jim Palmer and gained much positive encouragement and insight from his experience with his great non-profit organization and beautiful campus in South Orange County.

 

Jerry and I were offered some time on the KOCE TV show, Real Orange and we were able to talk about our next event, Think Tank 2011.  Each opportunity gives our organization more exposure and for that, we are grateful.

 

We were able to re-tool the website for B.R.A.I.N. to make it current, accurate and user friendly for people to visit.  Thanks, Corey.

 

Each day, B.R.A.I.N. receives calls and emails from families and individuals who need encouragement, referrals, and hope for the future.  We are thankful to all of the volunteers who help B.R.A.I.N. to be the vibrant organization that it is.

 

Sincerely yours,

 

Sue Rueb

Founder/President

 

 

 

 

Treat people as if they were what they ought to be, and help them become what they are capable of being.

-Goethe

This email was sent to corey.liebig@gmail.com by mgm84@aol.com |

B.R.A.I.N. | 5267 Warner Ave., #306 | Huntington Beach | CA | 92649