“Striking a Nerve: TBI Up Close and Personal” from MedPage

aforrest Leave a comment

In January, I was very excited to see a link to an interesting article that was posted on the American College of Rehabilitation Medicine’s Brain Injury Interdisciplinary Special Interest Group Linked-In page.

The article was called, “Striking a Nerve: TBI Up Close and Personal” and it was from a web publication called MedPage.  I have been thinking about this article for months.

The article was a doctor’s answers to a Medpage series where they asked doctors for their views on the state of medicine.

One thing to tell you about me is that because I am still learning my way around the computer again and because I use the computer sparingly in order to minimize the energy drain that using the computer causes me,  I am not the person that clicks on links very often.

However, I felt drawn to open this link to the Medpage blog.   I was glad I opened it.   On reading the article, I was thrilled, awed, inspired by the story and inspired by the possibilities in the story.   Wow!

Just by way of alittle background, I had become a member of the American College of Rehabilitation Medicine (ACRM) about 9 years ago in order to learn about brain injury recovery and to get the the latest expert knowledge to help my recovery.   I also joined ACRM because I wanted to retrain my brain to think like a PhD again and the best way I knew to do that was to surround myself with other PhDs and learn from that exposure.

So finding the MedPage article was exactly the sort of thing I had joined ACRM to be informed about.

Dr Romanas, the author of the article, felt very strongly about the need to improve medical education for doctors to improve their abilities to diagnose and treat persistent symptoms after brain injury.

Not only was the writer of the article a practicing MD and a PhD, but she was also someone who had overcome persistent symptoms following a car accident when she was 16, to become that well educated, pursue her career as a pathologist and raise her family.

Her article was very well written, and so raw, that I found reading it very compelling.

In addition, although her injury happened at age 16, her recent improvements in brain functioning and her ability to function in her life and her work that resulted from the cognitive therapy program she did recently happened roughly 30 odd years after her injury.

Since I am about 16 years out from my accident, the article lets me know, through anecdotal evidence anyway, that there will continue to be possibilities ahead for my recovery also.   I presumed that I would continue to experience neuroplasticity, but its always good to have a model ahead of me and concrete information about how she did it!

I am inspired by what Dr Romanas was able to accomplish while overcoming siginificant symptoms.  Many of us could not accomplish what she has accomplished with our brain’s working just fine.

I am also always inspired to meet others (and now their names!) of others who have had functional recovery after 2 years post-injury like me.

Here’s the article:

http://www.medpagetoday.com/Neurology/HeadTrauma/44084

I have a lot more to say about this article, and my subsequent talk with Dr Romanas.  I will save it for another blog.

Have you had recovery after 2 years?   I would love to hear more stories of people’s recovery after 2 years post-injury.

Why two years?  Because I was told by my doctors that they will never get better or recover further after 2 years.   And I hear from many, any others that they are told either one or two years also.

In fact, I would love to hear thousands and thousands of  stories of people’s recoveries after the 2 year mark!

That would be music to my ears to counteract all the times I heard that I couldn’t get better after 2 years.

 

Read More - “Striking a Nerve: TBI Up Close and Personal” from MedPage

Vision therapy — Part 1

aforrest Leave a comment

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:

http://nora.cc/images/stories/nora-conference-brochure-2014.pdf

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:

http://sxsw.com/interactive/awards/dewey

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.

http://www.cavinbounce.com/

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

Read More - Vision therapy — Part 1

New Learning — Part 1

aforrest Leave a comment

Before my brain injury, I did not know that one of the consequences of untreated or inappropriately treated  from mild traumatic brain injury/concussion was that new learning processes of the brain can be compromised.

I know now that my ability to learn new things is quite different from what it used to be.

In fact, I will go one step further back  than that.    Before my injury, I did not even know anything about the process of new learning in my brain!   It just happened.

My brain just did what it did, and I had little insight into it.

I guess I had some insight into my moods–when I was depressed or down, for example, I would at some point recognize that I was down.

But I had little insight into the cognitive processes that allowed my brain to learn new information and function in my day-to-day life and work.

After my injury, I have had to learn to develop a lot of insight about my cognitive functioning in order to try to get as much out of my brain as I can and to improve my functioning.

After my injury, I began to develop some understanding of when my brain was doing different cognitive functions–like short term memory and trying to anticipate.   I began to develop understanding by experiencing that my brain no longer worked in ways that I had come to expect it to work.  (Since I was not getting to appropriate treatment, I learned this through painful trial and error in survival mode.)

My understanding of how my brain worked was moved forward with my vision therapy and other therapies as I received them, eventually.   For example, when I finally received speech and language therapy (over 3 and 1/2 years after my injury) and eventually occupational therapy the awareness of my cognitive functions helped alot.   Dance therapy helped much later also.

Since speech and language therapy and occupational therapy sometimes worked directly on attention and working memory or helped me learn compensatory strategies to augment attention and memory deficits, my insight into my brain’s cognition increased.    That is to say, helping me with the basics of getting better attention and memory and compensating around attention and memory, I began to understand more about more complicated cognitive functions that relied on attention and memory (or at least that is how I experienced it).

Cognitive functions are different from mood, however, they can be affected by mood, so it was also necessary for me to learn how my mood could make it more difficult for my brain to perform cognitive functions.    For example, its hard to pay attention and concentrate when I am anxious.  So I had to learn to calm my anxiety (often about my brain not working properly in that situation) so that I could think as best I could.

I have also learned something about the variability in my cognitive functioning around my emotions and why reducing stress and being optimistic is useful to keeping my cognitive functions performing as best it can.

I started this blog post with the idea I would talk about new learning and the difficulties around new learning that I experience with my brain injury this week.

I realized I needed to say something about cognitive processes and also emotional processes, so I have done that.

I want to end the blog to say that this week there have been so many things going on (learning about my son’s kindergarten next year, trying to figure out next steps for my blog, trying to organize my thoughts about next steps now that spring break is over, and new information about scheduling camps for my son this summer, to name several.)   All these things are in addition to my “normal” abnormal routine.

With so much new information for my brain to process, it just comes to this place where I cannot process any more information.   I cannot learn anything new.

I am reminded that my head used to physically hurt when I got to this place.   I would get headaches and I would get irritable.   I would also get frustrated.

I have learned the cognitive strategy called “ride that through”.   I have learned that its not that I won’t be able to learn in the future, at my new slower rate.   Its that I need to rest my brain until it all sorts out.   I know that rest and pulling back will help me right now.   I will ride the discomfort through.  And one day it will be comfortable again in my brain.

I am glad that I know this strategy now and that I know it will work.

Do you have issues with new learning when too much is going on?  How do you support your brain when this happens?   How do you deal with it?

 

 

 

 

 

 

Read More - New Learning — Part 1

My Return to Work after concussion/mTBI story

aforrest Leave a comment

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.

 

 

 

 

 

 

 

 

Read More - My Return to Work after concussion/mTBI story

I Want my Brain Back Forward!

aforrest 1 Comment

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.

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

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.

Read More - I Want my Brain Back Forward!

March 12 is Brain Injury Awareness Day on Capitol Hill

aforrest Leave a comment

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.

 

 

 

Read More - March 12 is Brain Injury Awareness Day on Capitol Hill

Finding good doctors after brain injury takes effort and time

aforrest Leave a comment

We moved to back to Austin 2 and 1/2 years ago.

After 2 1/2 years, I am still putting together my medical team after my persistent symptoms after mild traumatic brain injury/concussion.

The difficulties I have had has surprised me.

I have had to put a medical team together, and the deficits from the injury very much compromise my ability to put one together.

It took me over 10 years in Northern Virginia to put together my medical team.

From putting a medical team together and from my speaking and advocacy work, I know that many doctors are not aware that there can be persistent symptoms after brain injury.

I know alot of the pitfalls of seeking medical care after persistent symptoms.

I also know that my persistent symptoms may get in the way of carrying out the doctors recommendations, so I want to do what I can to make my doctors aware that my symptoms may affect my abilities to follow through on recommendations.   I want to minimize follow through after doctors visits from falling through the cracks due to my deficits.

I can understand that doctors who are not directly involved in the brain injury field may not be trained about persistent symptoms and/or how they may affect my health care.  I know that I may look fine to a new doctor and that may also create a problem to my receiving the health care I need.

I have had alot of media attention about my injury and recovery.   So I always take a nice copy of The Washingtonian Magazine article about my recovery “I Want my Brain Back:… ” as part of the materials I take on my first visit as well as a chronology of my diagnoses and treatment so that I can hand doctors or health professionals a short summary on that.

I also prepared a talk on seeing doctors after brain injury for an educational series.   Debi Gale, a speech and language therapist helped me develop the talk.   The talk was sponsored by Brain Injury Services (BIS) of Northern Virginia to help people understand mild traumatic brain injury issues.  I received case management services at BIS in the ninth year of my recovery from my injury.  (Case management helped me tremendously with obtaining services I needed that I could not have gotten on my own).

So I always take written materials to my medical appointments so that things are written down and I don’t have to remember to say them.

I also try to write down as many questions as I have (which means remembering to do so beforehand and remembering the issues I need to talk with my new doctor about).

I know that I will be distracted in the office and the more I can focus my information and write down my questions before my appointment, the more likely I will get across any issues I need addressed and get the help I need.

I know its very easy — too easy — for me to get out of the doctors office and remember major issues that I did not bring up.

After 2 and 1/2 years here in Austin, I am still putting together my team.

Again, it took over 10 years in Northern Virginia when I had less awareness about my issues.

So I realized this week, that I need to be okay with it taking as long as it needs to take.

Sometimes I find a new doctor that is completely on top of it and I definitely want them to be on my team.  These are often the specialists like the sleep doctor I saw last week.

Sometimes I find a new doctor who is good/great and who is open to either somewhat knowledgeable or open to my issues.   I may need to further educate that professional about how to work with me and my deficits and this can take a while for us to figure out how to work together.

Sometimes I find I cannot work with a doctor or medical professional and that I need to start over again and look for another person in the same discipline whom I think I can work with.

I realized just I don’t have control over how much time the right team will take.    It is what it is.

I have about 3/4s of my team so far and that is a good start.

 

 

 

 

Read More - Finding good doctors after brain injury takes effort and time

Inspiration from finding a new good sleep doctor

aforrest Leave a comment

I had a great visit with a new doctor this week.

We have been in Austin now for almost 2 and 1/2 years, and I am still working to put together the full medical team of people that can help me with my recovery after Mild TBI/concussion.

The new Doctor whom I saw this week is trained as a neurologist and specializes in promoting quality sleep.

Many people do not know that quality sleep is very important for brain injury recovery.

In fact, what I have learned is that many of the symptoms of poor sleep are similiar to those of brain injury.

I was first diagnosed with a sleep disorder about 5 years ago after I had experienced another concussion when I fell on my butt and hit my head.

From my advocacy work, I knew that sleep disorders are highly correlated with mild TBI so it made sense to me to do the tests to see if I had a sleep disorder.

Even though I thought it made sense to do the tests, I was pretty sure that the sleep tests would rule sleep issues out (as opposed to tell me that I had an issue).

So it was a big surprise to me to hear that the sleep tests revealed that I had sleep apnea.

I was glad to hear that I had sleep issues though when my neurologist framed it in the way that he did.   He said “we don’t know how much of your brain injury is the brain injury and how much is the result of chronic sleep issues”.     The good news here is that improving your sleep is something we can do something about easily and hopefully it will help you.

So I started paying attention to my sleep health.    Mind you, this all was happening at the time that my son was about 6 months old.    Most moms and dads get less sleep, and having a child meant we were not getting the same amount of sleep that we had gotten before our son was born.

And my sleep got better and my energy got better and it was a total upward spiral at a time that it was tremendously helpful to be getting a push upward from better sleep.

And the improved sleep led to this very exciting upward cycle.   I had more energy during the day, which meant I could take on more exercise and then, in turn, the increased exercise meant that I had more energy and  got more sleep because I was tired in the right kind of way.   Not to mention that exercise is good for brain functioning.

When we moved to Austin, I also began to loose weight and have maintained a 10 pound weight loss.  And while I wasn’t heavy before, the weight loss helped me feel better and helped me want to exercise more.

So this week, I was able to go in to see the new doctor to continue the care around sleep that I was getting in the DC area.

I felt inspired about the next steps in talking with the new doctor.

I heard him say that sleep issues after mild traumatic brain injury can be sleep apnea or they can be caused by the area inside the brain not working properly after the injury and thus not regulating sleep properly.   He said we would try to figure out which it was.

I have seen alot of doctors following my injury, and many of my experiences with new doctors haven’t been so inspiring, to say the least.    So I am happy to report how exciting finding a good new doctor is for me!

Read More - Inspiration from finding a new good sleep doctor

Awareness and mild traumatic brain injury/concussion

aforrest Leave a comment

After my mild traumatic brain injury, I was not aware of my injury.

That is an understatement.

When I look backwards, I can see that my lack of awareness about my injury made my interactions with primary care doctor more difficult.  In my speech at the Congressional Briefing in 2011, I used the phrase “unbeknownst to me“ to describe my lack of awareness about my symptoms.

In that speech for Brain Injury Awareness Day, I go on to describe that “unbeknownst to me, I had the following symptoms.  I had a second grade math level, a third grade language skills level, 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”.

Years later, its amazing to me that I functioned for years with those symptoms (and others).

But, I did.

Why did I have to?

That is a complex question that I still cannot completely answer.

But I want to take a stab at answering it now with years of recovery (and advocacy) under my belt.

In this post, I want to talk about my own lack of awareness of my injury as a factor.

How aware was I of my injury?

Well, I knew something was wrong.

But I thought of myself as an articulate person because I was an articulate person before my injury.

If I had any expectation at all in my mind, my expectation was that whatever was wrong with me was temporary and would go away.

Plus,  I loved my life as it was.

I expected it to continue, as it was.

That is,if I had given it any thought.

I did not give it any thought.

I went to the doctor because I had headaches.

Frankly, I don’t think I would have gone to the doctor on my own.

Luckily for me, my colleagues at work said, I should go to the doctor because I was in a car accident.

They said to me that I had never complained of headaches before and that my headaches could be related to the car accident.

That was logic I did not have on my own.

That might tell you something right there, but it did not register for me.

And I was not the type of person who was going to let a headache get in the way of me living my life!

Looking backwards, I did not have awareness of all that had befallen me.

And unfortunately, neither did those around me.

One of my colleagues recommended a doctor to go to.

My colleague had fractured his skull in a bike accident and his doctor had helped him with his concussion recovery.

I made an appointment to see his doctor.

I went to see the doctor because my colleagues were telling me I should.

I didn’t have a “go-to” primary care doctor who knew me.   I didn’t need to have one.

What that meant was that my new doctor did not know me pre-injury.

If I had been aware of my injury, the outcome of going to a primary care doctor might have been completely different.    We will never know.

But I wasn’t.

Other than the one symptom — the headaches — I am not sure that I had anything else to tell my new doctor about why I came to see him.

From his point of view, I am sure that I looked fine.

Let me repeat that.  

I looked fine.

Looking backward, I can see what a mismatch in terms of expectations and knowledge that my first encounter with my new primary care doctor was.

Looking backwards, I don’t know how aware my doctor was of possible other symptoms of mild traumatic brain injury/concussion at the time.

I was only presenting to him (telling him) that I had one symptom.

That one symptom was all I knew I had at the time.

It was also all I was telling my colleagues because it was all I knew.

The other part of the knowledge mismatch was that I thought my new doctor knew all about what to do for a concussion because he had helped my colleague.

I did not know what a concussion was.  I don’t think I even knew the word then.

But, the most important thing about that is that I thought he did.

My new primary care doctor appropriately told me to proceed with caution which I did.

That meant that I did not start playing volleyball on the sand courts by the Potomac river at the bottom of the Mall (the park where all the Monuments are) in Washington D.C. that week, even though I had been looking forward to the sand volleyball season to start for months.

I don’t remember what he told me about my headaches, but I think he told me to take aspirin, when needed.

I went back to work and I went back to my life.

I believed that I was taking appropriate precaution and that everything would be fine.

Boy, was I wrong.

Looking backwards, I can see that lack of awareness is often a part of the injury, in my case and for many of the people I meet with the injury.

From my vantage point, lack of awareness can stand squarely in the way of getting to appropriate care.

Read More - Awareness and mild traumatic brain injury/concussion

The Value of Rehabilitation

aforrest Leave a comment

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.

Read More - The Value of Rehabilitation