Re-focusing and binocular vision

I see it as my job to get better and I am still working (hard) to get back to my baseline before my dental appointment on June 2.   Its been two months now.   Its been quite a struggle.  I have had to use all my resources and have had to find new resources to help me.   But I am getting there.  I think I am at 80% now, which means that in the past three or four weeks, I have made about a 10% improvement.

I would like for my improvement to go faster.   But realistically, I am grateful for that improvement.

My cold/bronchitis is lingering but almost over.

And I have been noticing that my vision and brain are reorganizing this week.   A visual/brain reorganization is about the best thing that could come of this setback.   Yes, I have felt my vision reorganize, and my brain reorganize.   The reason why I say that that is the best thing that could come out of this setback is because when I experience a re-organization, I know that I will get to a more functioning place with my brain once I get back to where my baseline was.

In other words, I will likely be better than I was before this setback.

Getting to a better place does not mean the setback was “worth” it.  It has been a struggle, to put it lightly.  It has taken all I have to give.   And its not over.

What getting to a better place means is that I have made the most of this period of setback.  In statistics, given that I am having a setback, I have ultimately used it to move forward.

Here are the highlights of what I have done this week to help myself:

I reconnected with my former speech and language therapist, Liz Joiner,  who gave me suggestions including some new resources for visual therapy and how my neurologist, Dr Hill, could help me get to visual therapy resources. Since visual therapy has helped me a lot, and since I am going through a visual reorganization, getting professional help with the next step, is definitely something I should consider.  Of course, they would have to do an evaluation to help the professionals decide if they can help me.

Liz also gave me some suggestions for a therapist who understands brain injury to give me some emotional support through this difficult time and who might be able to give me guidance and connect me with other resources here in Austin.

With the help of talking with others, I realized that the antibiotic I was taking for my bronchitis was wiping me out. So I started taking more probiotics.   That really seemed to help my gut — I could feel the difference.  What I have learned is that there are a lot of receptors in one’s gut.  And I have learned that helping my gut can help reduce some of the confusion in my head that I feel when I am sick and taking antibiotics.

How did I know I have begun having a visual reorganization?  My eye doctor in Washington DC, Dr Franke taught me how to recognize them.  One way that I recognize a reorganization is when I all of a sudden can see depth in a way I could not see it previously.  Its like flowers all of a sudden “pop out” with depth, that I didn’t previously see.

After my brain injury, I had depth perception issues.   What I know now is that I also had less than full monocular vision prior to my injury.  One of the benefits of doing vision therapy after my brain injury is that I have started to get back increased binocular vision and that the increased binocular vision that I am getting will make my vision system better than it was before my injury.

I want to be talking more (in my blog) about the benefits I have gotten from vision therapy in my recovery from brain injury.   For now, I want to say that Dr Susan Barry talks about her experience of getting binocular vision in her book “Fixing my Gaze”.   Dr Barry is a neurobiologist.  She understands the brain and brain development.  She describes getting binocular vision as a journey into seeing in three dimensions, in her book.   Actually, Dr Oliver Sacks first wrote about her journey in The New Yorker Magazine,  He called her “Stereo Sue”.   Dr Sacks was interested in writing about her story because getting binocular vision later in life is something doctors did not used to think that you could do.  And she did it as a result of finding vision therapy and optometrists who knew how to help her.

To finish this post, I also had the insight this week that I needed to let go of all the things I had planned to do in June and July that I have not been able to do so far.  I have been to sick to do them.

One of the things I did this week was start to re-focus on what I need to get done this month before my son’s school starts.   So my re-focus moved to a forward-looking strategy from a catch-up strategy.

And I also consciously worked on rebuilding this week.   I used Andrew Weil’s strategies of improving my surroundings to help lighten my mood and make me smile.  I bought flowers at the store and bought a sage plant with beautiful leaves to put by the sink to remind me of my new increased depth perception.   And I bought basil and made basil pesto which I love.  I started investing in the future, which is a good sign that of recovery for me. There is a point in recovery where I start feeling ready to invest in the future, and I have reached it.  I know that getting to the point of re-focusing and investment is a marker that my recovery is taking hold.

With my new vision for the future, its easier for me to get support for this last phase of my recovery back to or still hopefully surpassing my previous baseline.  Both from the inside and from others.


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Compensatory strategies and Deadlines

One of the great things about writing my blog is that it is forcing me to identify what stands in the way of writing my blog posts.   I have learned in Rehabilitation that the first step to resolving a problem is to be able to identify the problem is that is challenging for me.  Then I can work to come up with compensatory strategies to resolve the issue (work around it) or I can ask others for help to figure out a compensatory strategy to help me get around the problem.

I want to point out that last week, I had to come up with a compensatory strategy sort of at the last moment and I did!   Looking back, I am pleased with myself about that.  I so wanted to finish the post I had planned and get it out. Instead I came up with a strategy when things did not work out as I planned.   I realized I just had to explain what I had tried to do and wish everyone a Happy Memorial Day and be satisfied with that.

Last week was a short week for us because we were leaving early for the Memorial Day Weekend and we were traveling (which, in short, means a lot of extra preparation and cognitive steps for me.)   I had looked ahead and made plans to get my blog post done early so that I could post it.   I had started writing my on Tuesday, as far as I recall anyway.   And I had scheduled time into my calendar on the Wednesday in order to finish my draft before we left on Thursday morning.  All was going well so far.

To explain this further, I am going to step back a moment and say that what I have learned in rehab is that planning and figuring out how to meet a deadline are all “executive-functioning” skills.   I have had to relearn executive functioning skills as part of my speech and language therapy and I was lucky to have some very good therapists who have helped me.   And before I could even begin working on executive functioning, I had to do a lot of work on attention and concentration with my speech and language therapists.   What I did not know before my rehabilitation was that attention and concentration  are important skills underlying executive functioning skills.   My vision therapy has also helped me with these skills.  While I still cannot describe how, I know that they have.

My executive functioning skills are much better then they were because of my rehabilitation.   Some of these skills are more automatic now.   When I say they are more automatic, it means I do not have to think about them and line them up consciously, they happen by themselves (again).   Like when I used to get in my car and drive before my accident, I didn’t have to think about the steps of driving my car.   I did not have to think first I put the keys in the ignition, then I put the car into gear, then I adjust the mirror, then I back out of the driveway.  I just did all of those without thinking.  That is what I mean when I say that they were “automatic” before my accident.

Suffice it to say that how my brain worked was not automatic after my accident.    I had to relearn many steps that most adults do without thinking.

Back to my last Wednesday and trying to meet my deadline of posting my blog with the skills I currently have.

It used to be that when I was not quite done with a deadline, my brain could figure out how to resolve a problem in a limited time and resolve it without me having to consciously think about it.   I still remember the brain that could do that.   Because of rehabilitation and a lot of practice since rehabilitation, I have to consciously remember that as much as I would like to be the person that could automatically resolve deadline issues, I am not that person anymore.   That means that I have to find a way to resolve the deadline issue that incorporates my current abilities around deadlines.

So I was pleased with myself last Wednesday when I realized that I needed to just wish everyone Happy Memorial Day! as a solution to not quite having the executive functioning skills I needed to finish my post and get the other things I needed to get done that day.

What compensatory strategies do you use with deadlines?

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Comprehensive Management of mild TBI

Two weeks ago, I wrote about my new friend who is trying to get medical help in understanding her symptoms that she suspects are related to multiple falls and the empathy I felt for her after my own difficult search to find the help I needed to recover after my symptoms following a car accident in which my head went from side to side and back to forward.

I want to post some information that I heard on Webinar sponsored by the Brain Injury Association of America.   The Webinair was on Comprehensive Management of Mild TBI by Dr Kevin Crutchfield, MD and Dr Jessica McWhorter, PhD.  Dr Crutchfield is the Director of the Comprehensive Concussion Program and Director of the Noninvasive Vascular Laboratories at Mt Sinai Hospital of Baltimore and Dr McWhorter is a Rehabilitation Neuropsychologist at Berman Brain and Spine Institute also in Baltimore I believe.

Before I post more, I want to say that I am a big fan of Dr Crutchfield.  I attended a seminar that he was also a participant in, and I introduced myself to him because I was so impressed with his questions for the speakers.   Later, when I had another concussion (after the concussion that changed my life and livelihood), I traveled up to Baltimore from Northern Virginia to see him for a second opinion when I my new symptoms were not resolving.   He validated the need for a new sleep test and had several other suggestions.  His referrals helped my life enormously.   And he has helped a number of people that I have sent up to Baltimore, for a second opinion, in life changing ways.

I also want to say that he is by no means the only doctor that does comprehensive care for mild traumatic brain injury.   I am posting because his webinair had slides that said what comprehensive care is.  Since I had so much trouble getting to comprehensive care, and since I meet so many people who do not get comprehensive care initially–or who, like me, do not even know what comprehensive care after mTBI is– I wanted to post what it is.

This morning I heard the statistic from Dr Cheryle Sullivan that roughly 80% of people with TBI don’t get to treatment at all.   Much less comprehensive care.   And many people that I meet, thought that they were getting comprehensive care when they went to their doctor, because surely their doctor knew about concussion.   Later they found out, when they are not getting better, that they may not have gotten all the care that they needed.

One of the many objectives of the Webinair was to identify the essential elements of a comprehensive approach to mTBI.

I want to include information from the medical part of the discussion in this post.   I wish that I had had a comprehensive evaluation when I first had my injury in 1997.   Brain injury treatment has advanced tremendously since that time.   When I think about what I wanted to know it was what comprehensive treatment for mTBI was.

So here in 2014, I want to know that I have stated what I believe is good information about what to look for in treatment.   I struggled many years with symptoms that I believe I would not have had to struggle with had I gotten to comprehensive treatment early on.   I believe I am correct about making that statement because when I finally got to most of the treatments discussed, they helped me.   Earlier treatment is thought to be more cost-effective and faster than later treatment according to researchers.

I also want to say that many of the people that I meet through my public speaking and through my advocacy have not been evaluated comprehensively and are grateful for knowledge of what kinds of diagnoses have been helpful to my recovery and others, and what kinds of treatments are available so that they can recover further and move their lives forward as best as possible.

In the Webinair, Dr Crutchfield, a neurologist by training,  presented and discussed the following information:

Diagnostic evaluation should include:

-concussion scale

-neuro-ophthalmology (which includes vision therapy (added from my notes by ASF))

-referral to a mTBI program

-sleep test and referral

–physical therapy

–speech therapy

–cognitive therapy



Source: Comprehensive Management of Mild TBI, slide number 22.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

My layman’s understanding of a diagnostic evaluation is that the Doctor should consider all these possibilities and should pursue evaluation if the symptoms presented warrant it.   For example, an EEG might be done is seizure is a possibility but not done if seizure is not a possibility.

Since I am translating this information for the non-medically trained I want to present a second slide about what is treatable.

The slide is:

What can we Treat?

When rest alone provides no relief.

–sleep disturbance


–visual disturbance

–mood alterations

–behavioral alterations



Source: Comprehensive Management of Mild TBI, slide number 28.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

I will reach out to BIAA to find out is the Webinair is available for viewing and how one views it.   I reached out to Drs Crutchfield and McWhorter about their webinair last week and I hope to hear back from them.  I have questions for them and I will report back.   And in my next posts, I will post more about the concrete ways that comprehensive management would have helped me.  I also want to discuss that comprehensive management of mTBI by doctors and health professionals is also a goal of the Ontario Neurotrauma guidelines that I have posted earlier.


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Listening to my body

Perhaps one of the biggest gifts of recovery from brain injury is learning how to listen to the very subtle clues of my body and changing my actions in response to that information.

This week, the clues from my body were not subtle at all.    I have had a lot on my plate for awhile this spring.   At the same time, I have felt that I did not need to observe the same limitations that I have learned to observe in the past.

Its a tricky balance to figure out — how much to take on and how much to observe what I have already learned about my limitations.    Since I want to allow for improvements in my ability to function, I want to be flexible when I feel that I can take on more.    At the same time, I have to feel my way into how much my restrictions/limitations are changing  or how restrictive my new limitations are.   This is a trial and error process.

Earlier in my recovery, I call the trial by error process “error by trial”.    With a brain injury–with parts of ones brain not working well–its hard to learn to stop doing things that are making you feel worse, especially when I could do so much more before my injury that I had no sense for–and no experience about– the limitations that my brain injury imposed on me.

Earlier in my recovery, I needed a doctor or health professional who was knowledgeable about brain injury to help me with the trial and error process and to teach me awareness.    Because I did not get to appropriate health care early on in my injury, this meant I had to learn alot about my limitations on my own (which was very frustrating and marginally successful to say the least!).    I am especially grateful that my eye doctor, Dr Francke, helped me learn some of the basics on this by observing me twice a week at my eye class and by reviewing my activities with me on a weekly basis.

And the devil is in the details!   Figuring out the balance of how much rest and how much exercise for optimal recovery and when to increase rest and when to increase exercise is not easy.   For me, the help of a health professional was tremendous.   While my eye doctors have been very helpful for me with this, so too have been the speech and language therapists, occupational therapists and physical therapists who eventually helped me with this as I was successful in getting more and more treatment.  Because they were observing me with regularity they could make seemingly suggestions or tweaks.  What I experienced  was that often small suggestions had large consequences towards improving my functioning.

As for this week, I had to stop everything that absolutely did not have to be done this week, until I felt better.   That meant resting horizontally as much as I could while my son was at school and getting increased sitters for the week.

It meant using all my compensatory strategies like:

–putting things that didn’t have to be done off,

–getting take out,

–limiting my driving,

–eating as healthy as I can;

–sitting down everywhere I went;

–getting a little exercise but not as much as I normally do;

–doing things that were inspiring or fun — like noticing the beauty of spring — that gave me some energy;

–and generally conserving my energy as much as possible.

I feel much better, but am still taking it easy to try to get back to my “normal”.

I didn’t think I was going to be able to write the blog this week.    I feel well enough to spend a little time on it but will spend less on it and come back to it if I need to next week when I hope to have more energy.





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Vision therapy — Part 1

Of all the therapies that I have had, I believe that vision therapy has helped me the most.

I wanted to write about vision therapy today because the NeurOptometric Research Association (NORA) is holding their annual meeting this week in Cary, North Carolina.

I wish I could be there.

Many of the speakers at the meeting will be discussing how vision therapy can help with recovery from persistent symptoms following mild traumatic brain injury/concussion.

Here’s the program:

A friend of mine, Cavin Balaster, is keynoting at the conference.  I am so excited for him.    He will be talking about how vision therapy has helped him with his recovery from a severe brain injury.

I first met Cavin about two years ago at a Brain Injury Association of Texas conference where I was speaking.   Like I said, Cavin had a severe injury after falling from a tower in Brooklyn, New York.  His recovery started with coming out of a coma.  His early recovery was at Mt Sinai Hospital in New York City.

I met Cavin after he was released from the hospital and inpatient rehabilitation.   He and his mom had returned to Austin to begin the next phase of recovery.

Like me, Cavin was doing vision therapy which he started in NYC.   By the time I met him, he was working  with Dr Denise Smith OD here in Austin who I had begun working with also.   Cavin and I bonded quickly as there are not many people who have been fortunate enough to know about vision therapy and who have experienced the improvements that come from it.

We also noticed, while eating lunch together with his mom, Kim, that we both were choosing what we ate quite carefully.  We both wanted to eat to support our brain injury recovery as best we could.

A month ago, I invited Cavin to join me to watch the Dewey Winburne awards at SXSW-Interactive.   The Dewey Winburne awards are awarded to entrepreneurs and technologist who increase accessibility worldwide.  The Dewey Winburne awards are very special part of SXSW for me.   My former mentor, Dr John Slatin, at the then-Institute of Technology and Learning at the University of Texas (now the Accessibility Institute) was very involved in the accessibility community here in Austin.  Dr Slatin had learned to overcome loosing his eyesight later in life, and he taught me a lot about compensation strategies in his life.  He also helped me launch my speaking career.  He motivated me to write about how I was improving after brain injury and my efforts to find rehabilitation and get back to work.   He told me that there was little information about how to return to work in the blind community and that he imagined there was even less literature about doing it in the brain injury community.    John also got me involved in contributing to making website accessibile for people with cognitive disabilities.

Here is info about the 2014 Dewey Winburne awards:

I invited Cavin to watch the awards as he is the first person that I know who has done a successful Kickstarter campaign to support his book about his recovery.   Many in the vision therapy community reached out to support his endeavor because of his enthusiasm and improvement and his passionate desire to help others.

I will talk about teh benefits of my vision therapy in a later post!

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My Return to Work after concussion/mTBI story

The topic for the Congressional Briefing for Brain Injury Awareness Day on Capitol Hill on March 12, 2014 was Return to Work.

I cannot wait to hear what the Briefing Panel Members had to say.   Of the panelists, Jim Kelly, from the National Intrepid Center of Excellence at the United States Department of Defense, is one of my all time favorite researchers/clinicians, and I find his research and insights so helpful in general, but it has helped me to understand my experiences after my concussion.    I volunteered at the International Brain Injury Assocation’s meeting in the Washington DC area several years ago just so that I could hear Dr Kelly speak.  It was well worth it.

Since “Back to Work” was the topic at the Congressional Briefing this year,  I thought I would write down my (ongoing) return to work story after my mild traumatic brain injury/concussion.

First, I want to mention a little history about speaking and and writing and the Congressional Briefing.    I was the first individual with a brain injury to speak at Brain Injury Awareness Day in 2011 and I spoke about the Value of Rehabilitation.   (Survivors from the military and a former pro-athlete and survivor, Chris Nowinski, had spoken in previous years.)

Preparing that speech with the capable help of Leila Afshar who worked patiently and tirelessly to help me figure out how to tell my story about my journey to rehabilitation.   She modeled for me (through alot of trial and error) how to distill my story.    We had 4 minutes to tell the story of The Value of Rehabilitation in my life.   My speech, and the standing ovation that I got from it, moved my advocacy forward tremendously.

Since then, I have had more practice on trying to emulate what Leila helped me learn how to do — distilling the important parts of the my story.   Working on the blog has helped me write shorter pieces.  It has helped me learn that I often think I have one thing to say and its really about 5 topics.   And that I need to unpack what I think is one post into the different parts.

My return to work story:

I did not expect my injury in a car accident to lead to any work loss.  I had my life to lead and my research to do.

When I was diagnosed with a mild TBI by my neurologist 3 weeks after the accident because I was having symptoms, I still thought I could rest and return to work.

I got to two helpful therapies early on my own — chiropractor help and work with an optometrist who did vision therapy.   I could not absorb what I was reading and knew I could not work if I couldn’t read.

It took me three and 1/2 years to get to the brain injury rehabilitation in an outpatient setting.    I still cannot explain all the reasons why it took so long.   I know it still happens today.

Brain injury rehabilitation turned my life around.   It was complimented by the chiropractic work and the vision therapy I was already doing.   Outpatient rehabilitation gave me more hope that I could return to some kind of paid employment.

During outpatient rehabilitation, my speech therapist, Liz Joiner identified giving speeches as my one “transferable” skill from my old job.

She also helped me start an unpaid internship in Dr. John Slatin’s office at the Center for Technology and Learning at the University of Texas (now the Accessibility Office at UT).

I got married and my husband and I moved back to DC for Michael’s job.

I met Carol Bray at Trisha Meilli’s book-signing for her book “I am the Central Park Jogger: A Story of Hope and Recovery.”

Carol Bray helped me meet Susan Connors (now President and CEO at the Brain Injury Association of America, then at an organization called NASHIA).

Susan introduced me to Robert Demichaelis, a survivor and volunteer at the BIAA office.

I went to visit Robert at BIAA.   He told me there was an extra desk in his office.   He told me I could use that extra desk.

I was so excited, I did not know what skills I had for return to work yet, but I had a desk to go to!!!   That was a start.

I started volunteering at BIAA.   Just getting to Tyson’s Corner, Virginia which was about 40 minutes from my house in Arlington Virginia was about all I could do for a long time.

Learning what to say in the office for small talk was another still I had to learn.  When someone asked me how my weekend was, I needed to learn what to say.

When BIAA help a State of the Art conference on TBI, I asked Dr Allen Bergman, then-president of the Brain Injury Association of America (BIAA)  if I could speak at the conference.   He was looking for someone who hadn’t had treatment in first two years and then got better after treatment.   That was me!!!!

At the conference I learned about how difficult it could be to return to work after even a mild brain injury.   I cried when a researcher talked about the data on the return to work success rate for people with coma versus concussion/mild TBI.    I cried because I thought it was just me struggling against all odds to get appropriate treatment to to go back to work.  If you believe the data, it was not just me.   People with concussion/mild TBI had lower return to work rates than those who had overcome coma.

Later when I was successful getting off the waiting list for Brain Injury Services of Northern VIrginia, a case mamnagement group, they helped me with basics that I still needed help with .   I was roughly ten years out after my injury.   They helped with getting transportation services (I had been trying to take the bus and often got lost or got off bus in wrong or dangerous places).

They also helped me with other services that I needed including support services for me and my family.

Long story short,  I learned that I could do meaningful volunteer work and continue my public speaking to help others with brain injury.

I realized that although my goal was to return to work, I needed to get appropriate health care and support services before that could happen.

It wasn’t that I thought I could skip the necessary steps to support my work activities, it was that I didn’t know any better about the steps that had to happen.









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I Want my Brain Back Forward!

I am feeling really inspired after attending some sessions at SXSW Interactive Festival here in Austin this week.

I did a mentor session with Nancy Currie, a life coach, from Toronto.   My intuition told me to pick a session with her.

I told her that the title and magazine article from The Washingtonian is still really meaningful to so many people.

It has helped them validate their experiences and know that they are not alone.

It was published in 2007 and still helps people 7 years later.

I am so appreciative to Sherri Dalphonse, the editor who did a superb job framing the title and writing the article.

As my own recovery has moved forward, so has my advocacy.

And as my advocacy for people with brain injury has moved forward,  I have realized that I don’t really want my brain back.

Yes, you read that right.

Like everyone else, I want my brain to be moving forward.

That is to say, when I lost my brain (as I knew it) after the concussion during my car accident in 1997, I began to think I would never have my brain again.

Especially because I did NOT get to appropriate rehabilitation treatments for many years.

What I have come to realize is that my brain couldn’t move forward from that trauma without all the appropriate rehabilitation that professionals at the top of the brain injury field already knew about, but that I did not get to in Washington DC for reasons I still do not completely understand.

Eventually, over many many years, I found the appropriate treatments in a very piecemeal fashion.  I also had to discover a lot about recovery on my own.

Slowly I learned to describe what was wrong with me better and eventually how to advocate better for the treatments I needed.

My early treatments of vision therapy may have been some part of the reason why I could begin to describe what was wrong better.   None of the doctors I went to at the time understood or appreciated the value of the vision therapy.

Through a lot of struggle and hard work I eventually found health professionals who understood what was wrong including some of the doctors I was already seeing.

I thought it was me who had such a hard time finding the right professionals who could help me.

What I have learned in my advocacy is that it happens all over the U.S. (and most other countries).

It happens all the time, in 2014, that people with concussions who need help are not getting the treatment they need to get better.

If people with concussion/mild traumatic brain injury cannot get to the right treatments, they cannot get back to work!

Years and years after my injury, I understand that just like anyone else, we with brain injuries want our brains to move FORWARD.

And we need help getting our brains and ourselves past the medical trauma to the place our brain’s can cognitively move forward just like every one else’s.

Natalie Currie suggested my motto ought to be “I Want my Brain Back Forward!”     

And that is why I named my blog A Plastic Brain.   Because I wanted to talk about neuroplasticity–the brain’s ability to change and get better.    It was the possibility that my brain could change that gave me HOPE.

And with HOPE, I found my brain could change.

And know I recognize that what those of us with persistent symptoms after concussion really want to know about and experience again is neuroplasticity.   Our brain’s ability to change and learn again.   Many of us can get there if we can just get the appropriate treatments.

I am still learning how to post, so I cannot figure out how to cross out the “Back” in the title that way right now.    I will ask someone about how to do it and update my post when I can.

Have you experienced neuroplasticity in your own life?   Please share your experiences with neuroplasticity after brain injury so that we can get the word out and give hope to others.

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March 12 is Brain Injury Awareness Day on Capitol Hill

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

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




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The Value of Rehabilitation

I spoke at Brain Injury Awareness Day 2011 in Washington DC.    I was the first civilian (non-pro athlete)  survivor to speak at the Congressional Briefing.  I received a standing ovation.

Other briefing panel members included: Brigadier Richard W. Thomas, Army Surgeon General; Colonel Jamie B. Grimes, Director Defense and Veterans Brain injury Center; Kathy Helmick, Deputy Defense Centers Excellence for Psychological Health and Traumatic Brain Injury; Patty Horan, Wife Of Wounded Warrior Captain Patrick Horan; Dr Lisa McGuire, Research Team Leader, Division of Injury Response, Centers for Disease Control and Prevention;  and Dr Allen W. Brown, Mayo Clinic.

Here is my Statement.

I was introduced as Dr. Anne Forrest, TBI Survivor and Advocate, formerly Senior Economist at the Environmental Law Institute.

The Topic for the Briefing was The Value of Rehabilitation and the Road Ahead


I’m a survivor of traumatic brain injury. I’m honored to be here. I’m up here representing 1.7 million people who get TBI each year and are correctly diagnosed in the emergency room with TBI. And I’m  also representing more than 1.7 million more people who are either NOT correctly diagnosed in the ER or who never make it to the ER. I’m in the latter category. Combined, that’s more than 3 million, or one out of every hundred, Americans who get TBI each year. Some get rehab, some don’t. Some get better, some don’t.


In representing this population, I know that I have big shoes to fill, but I have worked hard to have the skills to fill them.


I’m going to tell you about my accident and recovery. If there’s anything I want you to know, it’s how much I needed rehab, how astoundingly difficult it was to get it, and how dramatically it changed my life for the better once I got it.


Prior to my injury, I got my B.A. at Yale and my Ph.D. from Duke, and I came to Washington to work as Senior Economist at the Environmental Law Institute. I was a varsity athlete and an Ivy-League champion, still played competitive sports, and had an active social life.


I was rear-ended in a car accident in 1997 by the Lincoln Memorial. I was coming across Memorial Bridge from Virginia and merging into Rock Creek Park. My head swung from side to side and back to forth. Neurons in all areas of my brain were either stretched or broken. I drove away from my accident.


After my accident, unbeknownst to me, I had a second grade math level, third grade language skills, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability. I couldn’t absorb what I was reading, and I had difficulty with social cues.


What troubled me most about my symptoms was that I would get over-stimulated in normal environments. The over-stimulation would lead to sleep problems, and I’d find myself in a downward cycle with worse cognition and a depressed immune system. I was working really hard to keep my life from going from terrible to worse.


My journey to rehabilitation was long, exhausting, and often quite depressing. I was diagnosed within six weeks, which was very lucky, but I had tremendous difficulty getting to rehabilitation. My first rehabilitation was actually with an optometrist who helped me with vision therapy because I couldn’t read. That was tremendous but not enough. It took me three-and-a-half years to get to appropriate rehabilitation. That’s almost the time it took me to get through college. I got attention, memory, speech training, and executive function training. Known as cognitive rehabilitation, these are the building blocks of thinking. Rehab began a slow and steady path to recovery that eventually turned my life around.


Because of rehab, I can read, I can watch fireworks, I can follow the plot of a movie. But most importantly, rehab gave me five gifts for which I’m most grateful.


Because of rehab, I have more independence and am in charge of my own life. I use my cognitive strategies daily. I must use them or else I cannot function, and I function with lots of support from my husband, friends, and community.


Because of rehab, I have my smarts back. Vision and cognitive therapy allowed me to manage my cognitive issues so I could think again, and my economics training came back. I had worked so hard to get my training.


Because of rehab, I learned to take care of myself well enough to be able to take care of someone else. I’m a mom of a two-year-old now, who’s truly the joy of life for my husband and me.


Because of rehab, I have something you are watching right now. Rehabilitation gave me the groundwork for rebuilding my ability to speak publicly. It was in rehab that I learned that public speaking was the only job skill I still had.


When I first spoke, I didn’t know what I was saying unless I was reading it. Now, I can look at my audience.


I was told repeatedly that I would never get better after two years. And yet, except for the vision training, all of my other rehab and all the gifts that came from rehabilitation came after two years. Because of rehab, I’ve witnessed my brain’s ability to change, restructure, and re-wire. This is called neuroplasticity. Neuroplasticity is incredibly powerful.


Without rehabilitation, I don’t know where you’d find me, but possibly I would be in some gutter. The phrase “There by the grace of God go I” means a lot to me.


As a result of rehab, I’m a wife, I’m a mom, my life is meaningful and productive, I’m giving this speech, and I know all about neuroplasticity.


I have a PhD but I’m not a researcher now. Honestly, that’s a little hard for me as I sit here on this panel today with other PhDs and MDs. I will always wonder where I’d be if I had gotten to rehab earlier.


But I can tell you that rehab dramatically improved my life. It changed my life for the better, unequivocally and uncategorically. Notice that I’m able to use the big words now. Rehab has given me a meaningful and productive life back.

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Optimizing my brain functioning — my new monitor!

Because of my training and work as a PhD economist prior to my injury, I think about things like how to optimize my brain as best I can.    Prior to my injury, I worked on issues that are now called “sustainability”  or “sustainable development”.  I did research on U.S. development and made suggestions for improvements for other countries hoping to leap frog past the mistakes made in the U.S.

After my injury, I have learned abit about how to harness this prior training and research to help me get better (in other words, develop and improve) after my injury .

When I can, I try to think (and I seek help to think about) better ways to optimize my brain functioning.

And, I also think (and seek help to think about) next steps to re-optimize my brain functioning each time my slow but steady improvements in my abilities take me to a higher level.

My new, bigger, monitor that we bought this week has helped me tremendously.   I cannot believe what a difference it is making!  It is opening up space for me to think better.

And in being able to think better, it is opening up new horizons for my recovery.

Let me take a step back.   When my head swung from side to side and front to back during my accident, connections in my brain were either stretched or broken.   It’s like the telephone wires could no longer pass signals across them.  I never knew how many telephone lines there were connecting parts of my brain, until they no longer were passing signals to keep parts of my brain connected!

I did not have damage to my eyes.  My eyes are fine.   However, connections between my eyes and brain were disrupted.   And I have learned first-hand that those disruptions affect my vision.

To improve my vision and thinking,   I have worked with optometrists who understand how to help me recover these connections (often called development optometrists or visual therapy doctors).  The hard work I have done has helped me tremendously.   I believe this work has been instrumental to fostering neuroplasticity and I believe its why I do not experience the type of lengthy plateaus that many people talk about with persistent symptoms.   More on that later.

Dr Franke, OD in Washington DC (now retired), Dr Judy Hughes OD in Austin, Dr Denise Paquin OD in Northern Virginia, and Dr Denise Smith OD in Austin have helped me alot with exercises, daily living suggestions and recommendations about optimizing my functioning on the computer (versus my increased cognitive fatigue from working on the computer) that have helped me tremendously with my recovery.  I have made alot of progress.

Buying a bigger monitor is following through on a recommendation made years ago by Dr Franke.   At the time, I wasn’t in a position to make the change, but I kept it on my list of things to do in future.

With our move to Austin, I have been using my laptop monitor on my computer.   (So, I have used a smaller screen than my previous home computer).   I have had lots of improvements with my eye-brain connection in past two years through my vision therapy exercises, my physical exercise and some chiropractic therapy.    With the new purchase,  I have gone to a monitor that is 24 inches wide by 15 inches — so a big change compared to the laptop.

What I am still surprised to experience each time I use my computer is how much clearer I can think with the big screen!

My non-technical explanation of my experience is that my brain can better organize what I am taking in visually.   And once I have written that description, I realize that that is a good description of what my visual therapy exercises do for my brain, in general.   It seems like the monitor is enhancing my brain’s organization abilities when I use the computer, rather than un-enhancing or not enhancing them at all.  This means that I am giving my brain practice at better organization when I use the monitor or at least not making my brains organization worse each time.

Amazing!  Just thinking about the improvements from the new monitor gives me new energy and hopes for more continued improvement for my brain.

Is it possible that the monitor will help me improve brain-functioning at a faster rate?




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