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The Brain Injury Recovery Network
http://www.tbirecovery.org
Our website of the month for July 2007 is a work
of dedication, love and hope. The Brain Injury
Recovery Network is the website for a not-for-profit organization
started by the parents of Ashleigh Szabo, a young
woman who in 1999; was an Ohio high school senior about
to graduate and who
acquired a traumatic brain injury as a passenger in a
car that was involved in a motor vehicle
accident.
Many families who have had children with TBI have
created web pages and blogs and websites about their loved-ones (we
link to several of them). These sites are helpful on a
number of levels including: communicating with family
members and friends who are far away, documenting
progress and allowing a public place for other
families who have a child or a family member that
has experienced a brain injury to come and learn what
others are experiencing as well as allowing those visitors to
benefit from their wisdom.
The Brain Injury Recovery Network is unique in that it
melds the ongoing story of Ashleigh's rehabilitation
with a very useful resource website about traumatic
brain Injury. Ashleigh's story is documented for
the visitor along with a blog about her progress, but
there is also information and articles to assist other
families to quickly learn what they will need to know
to help and advocate for their loved-one.
The legacy of traumatic brain injury in the United
States has traditionally been families helping
families. The Brain Injury
Recovery Network
continues this in a personal way.
We mentioned wisdom and you see that right from the
homepage. Near the top of the page are two boxes.
One box is titled: "Crisis Phase," the other:
"Long-Term Phase." A parent or family member
with a loved-one who was recently injured and who
visits the site and clicks
on "Crisis Phase," will be taken to a page
that will give them needed information. The
section is broken up into two pages one covering the
Emergency Room (ER) and the other for the Intensive
Care Unit (ICU).
The ER section outlines what to realistically expect
in that situation and prepares visitors for the
difficult parts of this phase including the initial lack
of information and waiting. There is also
encouragement to use the services of the trauma
center's Chaplin (for believers) and encouragement to
contact close family members right away. Simple
and concise, this section is one of the best we have
read of its kind. One of the common things you hear from families
after an acute hospital experience is that there was
little information about what to expect. Many
hospitals have computer access for families and more
and more people are using mobile devices to access the
internet so today it would be a matter of doing a
simple search in a waiting room and having this necessary
information.
The ICU section is longer. The section gives the
visitor a good to-the-point overview, along with
explaining some of the procedures that may be
happening and a glossary of equipment and terms that
enable the reader to ask informed questions.
There is also a section on possible complications that
could occur, and a section on what to realistically
expect. The next section is called "Tips
from One Family to Another," this section is
"advocacy 101," but specifically related to
brain injury. It includes information on dealing
with physicians, staff, other family members, ways to organize
yourself and encouragement to develop relationships
with doctors, nurses and other families.
Wisdom comes from the experience of supporting and
caring for a loved-one after a traumatic brain
injury. Ashleigh's dad, Ernie Szabo told us why
they started the organization and website:
We
started the site after our own experience of
being thrust into the situation where we were
being asked to make difficult, life or death
decisions concerning our daughter’s care
after her very serious brain injury in May,
1999. We searched for information but found
very little that could help us quickly
understand what was happening and what to
expect. We developed our site to try to answer
some of those same questions for other victims
and families.
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The homepage of the
Brain Injury Recovery Network
has links that take the visitor to two important
overviews: "TBI," and an "injury"
overview. The presentation is helpful in
that the TBI overview gives you basic information and
facts about the actual injury itself. The
"injury" overview is a more expansive
section that gives information about different types
of brain injury and the potential impact. This
is written from the perspective of a parent and is
insightful for any supporting family-member. In
this regard an important point is made in the section: "We
think you have to act as if you only have one choice.
That choice is to believe and act as if your loved one
is going to be completely healed." There is
hope in that statement and this site imparts a lot of
hope to anyone with an injured loved-one.
There are two videos on the Brain Injury Recovery
Network. One is on the homepage and is entitled:
"A Day in the Life of Ashleigh Szabo."
Through images and narration you can learn about
Ashleigh, her injury and ongoing recovery. In
the images you see something important - support from
family and friends. The other video called
"Ashleigh's Brain Injury Story," is located
on "Ashleigh's Story," webpage. It is
an important and difficult video to view.
Interviews with Ashleigh's parents along with a video
account of her care and recovery is a window into
traumatic brain injury that has to be seen in order to
really understand the impact of a TBI and the
sometimes long process of recovery. The Szabo
family performs a great service by being public with
this and allowing people to see their emotions.
That kind of perspective makes this site unique and
invaluable for families and friends whose loved-one's
have acquired a TBI.
You can also visit an ongoing blog about Ashleigh with
updates about her life and rehabilitation. The
blog includes photos which is very important because
it allows visitors including parents and family members
of newly injured persons the opportunity to see that despite
having a TBI - including one that is severe in nature
like Asleigh's injury, people
survive, they improve and have proactive lives.
It's also important to see what a dedicated, supportive
family can mean to the quality of life for someone
with a brain injury - even with a high level of
acuity.
As an organization, the Brain
Injury Recovery Network
operates a toll-free support line. It is an
important tool to assist others. People can call
the support line with questions, inquiries and
comments. It has been quite effective as Ernie
Szabo told us:
We
have found through scores of calls to our
Support Line that peoples needs are as varied as
are the types of brain injuries. Calls received
close to the time of the injury are typically
people seeking information on what to expect and
we also encourage them to hang on to their hope
and give their loved one every opportunity to
recover. Other calls from people who are further
out from their injury often are seeking help
with support services, insurance issues, and
living or work assistance. We also get a number
of calls from people with mild brain injuries
who are having trouble convincing doctors and
others that they have a brain injury and are
seeking help coping with deficits, especially
emotional and memory issues.
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The
Brain Injury Recovery Network's website has other
resource pages they have created that are geared to providing vital
information to assist families of newly injured persons
in making decisions about rehabilitation and care.
These pages include: financial and legal issues,
insurance issues, alternative therapies, rehab that
works, links, a news page and others. You can view
the full menu when you visit their site. There are
also links to other websites and related resources that
you can visit from the site. As we
mentioned the Brain Injury Recovery Network is a
not-for-profit organization visitors can donate through
PayPal on their website and they also have a web store
that sells adaptive items online with the proceeds going
to support the website the toll-free help line and
organization. You can learn more about the Brain
Injury Recovery Network, their purpose and programs
when you visit their site.
The Brain Injury Recovery Network has taken on an important
role by creating a website that is a go-to resource for
families and friends during the first hours, days and
weeks after an injury occurs. Operating this great
website and all it offers involves significant effort.
Ashleigh's brother Brent has volunteered hundreds of hours of his
time, unpaid, over the years to create, maintain and expand the site
with new resources. The Brain
Injury Recovery Network's
mission of the is truly a family effort. After several years
of operation the website
has assisted scores of families during this critical
time. Ernie Szabo noted for us:
We
are very proud that we get lots of compliments
from people about our site and even have had a
few people get back in contact with us to tell
us that they feel the information we were able
to provide saved their loved one’s life.
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A
lot can be gleaned from the life and recovery of
Ashleigh Szabo and the contributions her parents have
made not only to her life but the lives of other TBI
survivors and their families. Northeast Center for Special Care is pleased to present
The Brain Injury Recovery Network as our website of the month
feature for July, 2007. They are
just a click
away, and don't forget to bookmark them so you can visit
again.
Disclaimer:
Reference in this web site to any specific
organizations, commercial products, process, service,
manufacturer, or company does not constitute its
endorsement or recommendation by Northeast Center for
Special Care.
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