advocacy

March 12 is Brain Injury Awareness Day on Capitol Hill

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In March every year the Congressional Brain Injury Task Force holds Brain Injury Awareness Day

I loved participating in this event every year when we lived in Arlington, Virginia.

Each year I would learn more about how to participate fully in the event and though that information, I was successful in bringing more and more fellow survivors of TBI to be a part of the event.

There are a number of activities to participate in and its noisy and there’s alot of activity in the House Office Buildings, so its a marathon event for someone with a TBI and sensory issues.   I had to employ all my compensation strategies and help other survivors to remember to use them.

There are four parts to the day:

–There is the “Fair” where private and public entities who are providing services for rehabilitation and daily life and employment can educate congressional staff and the public about the issues and what they are doing to address them.   There are people with information about promising therapies and new research.   And there are people showing off the programs for athletes and civilians to help with concussion monitoring and concussion recovery.   Over the year, the number of organizations at the fair has grown tremendously and each year, its exciting to learn from these people and their organizations about new ideas and new programs and new researcher.

–There is a Congressional Briefing on a topic.  The topic for March 12 2014 is “Return to Work and the Road Ahead”.     The briefing usually runs for an hour or so and its an opportunity to educate Members of Congress and their staffs on the topic as well as health professionals and the public.   Briefing topics and panel members statements are validating and helpful for understanding what is being done to solve important issues and some of the important entities involved.

–During the day, survivors, families, professionals and researchers make appointments with their Representatives and Senators and/or their staffs to talk with them about issues and to bring attention to upcoming legislation or budget legislation requests and the position that would be helpful to survivors and their families.   These requests are usually for improved services, research, reimbursement and funding.

–Lastly these is a reception for members of Congress, staff, survivors and their families and professionals and researchers.   There are announcements there as well as an opportunity to mingle and network.  There is food and its a lovely reception.

I first started going to Brain Injury Awareness Day in about 2003 when I volunteered at the Brain Injury Assocation of America.   No doubt, Robert Demichalis, a longtime survivor and intern there, showed me the ropes.   Over the years, I watched as Brain Injury Awareness Day grew and grew.   I learned alot about what was going on in Washington DC at the federal level and about the innovative programs at the State level that are supported through federal monies.

I also watched and cheered and felt inspired when I saw survivors from be part of the Congressional Briefing Panel.

In 2009, I watched Chris Nowinski, a former pro-athlete and a survivor and leader and advocate in the Sports concussion world talk about the work he’s done along with representatives talking about football and boxing and other sports where concussion is an issue.

And then in 2011, I was asked to participate on the Briefing Panel as the first civilian survivor to speak on the Panel.   It was an incredible honor and I was very proud to do it.  The topic was “The Value of Rehabilitation”.   It was a exceptionally meaningful topic for me to talk about for several reasons.

–I had to fight desperately to get to rehabilitation after my concussion (like many others have to), so I knew what my life was like without rehabilitation and how much my life improved with it.

–I had been told early on by medical professionals that I would never get better after two years.    Since I never gave up and did not even get to formal rehabilitation until after 2 years, my personal experience proved that neuroplasticity existed.

–Dr Allen Brown from the Mayo Clinic reported the research on what we know about how long the benefits of neuroplasticity can be attained.   He pointed to me as an example of anecdotal evidence that neuroplasticity last longer than the research has been able to show yet.

–Since I am trained as an economist, talking to the issue of “value” of services, was particularly meaningful.   Much of my career as an economist prior to my injury was spent working on measuring value.   Now my life story was being used as an example to inform others about the value of rehabilitation!

I was so proud to receive a standing ovation for my talk.   And Peggy Horan, the wife of a Wounded Warrior named Captain Horan also spoke about their journey and  received a standing ovation.   The stories of survivors are important and meaningful in Congress, especially that year.  You see, 2011 was also the year that Representative Gabrielle Giffords was shot.  Brain injury and recovery were even more meaningful that year with the realization for persons in Congress that one of their own had fallen.

We moved to Austin that year, so I haven’t been back to Brain Injury Awareness Day since.   I have followed it and I still work to get survivors that I know through the Brain Injury Association of America and from other areas to attend.   I hope to go back soon.

Here is the agenda for the day:

Brain Injury Awareness Day 2014

Brain Injury Awareness Day on Capitol Hill is Wednesday, March 12, 2014. BIAA is committed to helping the Congressional Brain Injury Task Force plan a successful event. BIAA thanks Reps. Bill Pascrell (D-NJ) and Tom Rooney (R-FL), co chairs of the Congressional Brain Injury Task Force, for their leadership. As in years past, several events will be hosted throughout the day.  A schedule of events is as follows:

10:00 AM – 2:00 PM   Brain Injury Awareness Fair, First Floor Foyer of the Rayburn House Office Building

2:30 PM – 4:00 PM Briefing: “Returning to Work: Making Headway After Brain Injury”, U.S. Capitol Visitor Center Meeting Room South

5:00 PM – 7:00 PM  Reception Celebrating Brain Injury Awareness Month, The Gold Room 2168, Rayburn House Office Building

Here’s the link to the advocacy section  of the Brain Injury Association of America website   www.biausa.org/biaa-advocacy.htm

For more information about vendors and researcher organizations and vendors at the Fair, please go to the BIAA website.

 

 

 

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Why guidelines for treatment after concussion/mild traumatic brain injury are so important to me

aforrest Leave a comment

Back to guidelines for concussion/mild traumatic brain injury this morning.

I have been thinking about what is the most important thing to me personally as a survivor about the updated Guidelines for Concussion/Mild Traumatic Brain Injury and Persistent Symptoms developed by the Ontario Neurotrauma Foundation (ONF).   I introduced the guidelines in my blog a couple of weeks ago.    They are the first guidelines for the treatment of civilian adults with persistent symptoms in the world.

They have been updated recently to include the latest research and clinical knowledge.   I worked with a group of other experts on these, including several experts from the U.S. and Australia as well as experts from Canada.

I know that the ONF guidelines may be difficult to read and understand since they are written for Health Professionals.   So I want to talk about what they mean to me and explain them in a way that can be understood for people with concussion and mild traumatic brain injury and those who love them.   Here’s the link to the guidelines posted on the ONF website: www.onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

Before I go further, I have to say alittle about my ability to prioritize what the most important thing about the guidelines is to me.   Prioritizing is definitely not my strong -suit post-injury.   In fact, what I have come to learn is that prioritization requires some higher level executive functioning skills that I am still consciously working on to improve.

I will say though that my ability to prioritize has gotten better with practice.   In fact, I remember that people would ask me what’s the most important thing  about this or that for you?   And it would stump me.   I couldn’t answer, especially in the time that they expected me to answer it.    I learned to compensate by learning to ask — “Could you give me a yes or no question?”

Later, I learned to try to say it with a little humor — “Could you give me an easier question for less money?”

Practice in awareness has also helped me recognize that even without my challenges in prioritizing, it might be difficult figuring out the most important thing about the concussion/mild traumatic brain injury guidelines.  I say that because there are many important parts of the ONF guidelines that affect me as a survivor very personally.    And,  I know that many of the parts are important to other survivors because I have had many conversations with survivors and their loved ones who have had big difficulties finding the help they need after concussion/mild traumatic brain injury.  And the guidelines address many of the questions that I and others have taken weeks, months or years trying to resolve  for ourselves.

As I sat down to write this blog this morning, I realize that  the first thing I really need to explain is why I think Guidelines for Doctors and Health Professionals for treating patients with concussion/mild traumatic brain injury are helpful to survivors and their families and why I would like to see them for every country.   Then I will talk about specifics in the ONF guidelines.   I think they could be used as a basis (or jumping off point) for the development of guidelines in other countries.

Guidelines are important because, quite simply, many people with concussion are (still) not getting the best advice on appropriate treatment after concussion/mild traumatic brain injury.   So, again quite simply, better information to Health Professionals will lead to better outcomes for people with concussions/mild traumatic brain injuries.

 

 

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Helping others by providing the information that I wished I had gotten when I had my injury

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I had written a draft post earlier this week about what I would have wanted to know after my injury that I was struggling with.  Then some things came up that grabbed my attention.  It occurred to me this morning that perhaps the best thing I could do was let that draft post sit and eventually it will come to me how to say it.
I wanted to post the following statement that a new friend wrote about me for my website because it introduces my advocacy well.  In fact helping others with their journey to recovery, one-on-one, has taught me alot about what people need to hear following a concussion.
Here’s what my friend wrote:
“I first met Anne several years ago when she moved back to Austin and joined
the church where I am a member.  Anne is smart and outgoing and she became
an instant friend.  When I learned more of Anne’s story, I was even more amazed
by who she is as a person.  Several months ago, our nephew had a serious closed
brain injury.  Anne was one of the first people I called.  She was a wealth of good
information and she shared numerous helpful resources.  However, what I most
appreciated about our conversation that night were her encouraging words and
positive outlook and her emphasis on hope.  Our nephew thankfully is well on the
way to a full recovery.  I am grateful for Anne’s friendship;and I am especially thankful
for her continued sharing of her gifts and experiences researching and working with closed brain injury patients.”
                                                –  Martha Richardson
Martha had called me because her nephew had had a concussion during a bike accident.  She told me that the family was concerned by what they had heard from the MD whom they saw.   They heard that there was a 50/50 chance that their nephew might be permanently disabled by the concussion after two years.   I was hearing what had been said third hand. So I don’t know what was actually said.   I do know what they heard and how much it concerned them.
And, I knew that I wasn’t hearing about any recommended treatment.    In listening to survivors and family, I know that its often missing.
When I probed about it,  I heard that the patient and family hadn’t been told about what  treatment would be helpful NOW to improve the odds that the patient would get better and wouldn’t be disabled two years from now.
I know firsthand the importance of early treatment for concussion.   I didn’t get what I needed early on.   I will always wish I had.     So I gave advice to my friend based on my experience.   I suggested to her that the family might want to get a second opinion with one of the doctors and/or programs that have helped me here in Austin.
It makes me feel good to hear that my friend’s  loved one is “well on his way to recovery” having followed my advice.
And, there are two other resources that I always tell people they should consider further for information:
The information line and website at the Brain Injury Association of America:
1-800-444-6443,
The second one is a book call “The Brain That Changes Itself”   By Norman Doidge.  This is a tremendous book on neuroplasticity our brain’s ability to rewire and grow.

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practice, practice, practice and sharing my story

aforrest Leave a comment

It feels great to be reflecting on the life goals I have attained following my injury.    It reminds me how far I have come.

It feels great to finding my voice at a new and deeper level in writing this blog.

I can feel my voice coming from my core.    It feels great.

With our move to Austin, I have not yet been regularly giving speeches about my story as I was in the Washington DC area.   And writing my blog reminds me how good it felt to be helping others and raising awareness about persistent symptoms from concussion/mild traumatic brain injury (and brain injury) by sharing my story.

So what are the big steps that I have had in learning how to tell my story?     As with relearning to drive, I have experienced many twists and turns and much frustration.   To put it lightly.     But here are the big steps.

First, I had to get to appropriate rehabilitation.

Second, the speech therapist worked beside me to show me the level of my skills that I actually had and to develop my awareness about them.    For example, I had to relearn what the topic sentence was in a paragraph and how to write a topic sentence.   These were skills I first learned in the third grade.

Then, I had to learn to write my story as part of my rehabilitation and give it as a speech.

Fourth, I had to practice and practice and practice writing my story (using the template from that first speech) and practice my public speaking.

Fifth, I learned how to write different aspects of my story (without the template) and eventually learned to give my speech without having to read it.

These steps not only helped me learn to tell my story.  Telling my story helped me be able to talk with different media to tell my story to them and telling my story helped me with advocacy.

More on all these steps in the posts to come.   But, if you want to skip ahead and read my story as told  in The Washingtonian Magazine here is the link:

http://www.washingtonian.com/articles/health/i-wanted-my-brain-back/

 

 

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