persistent symptoms

Finding the Best Doctors

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I have been trying to help a new friend who suspects that the symptoms she has struggled with for years, since age 16, are possibly the result of cumulative brain injuries during falls.

She found the article in the Washingtonian Magazine about my recovery and much of it seemed so familiar to her that she reached out to me. www.washingtonian.com/articles/health/i-wanted-my-brain-back/

Because of my own struggle finding appropriate rehabilitation, and my own health and functionality improvements when I did get to rehabilitation, her story touched me.

You see, many years ago, I remember reading Dr Claudia Osborn’s book  “Over my Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out”.

Reading her book helped let me know I was not alone.  And I had felt very alone on the day I found the book at the Barnes and Noble on 18th and L  Streets in Washington, DC.

I was roughly two years out after my injury, and I had just gone to see my neurologist and was feeling depressed as I sorted through the appointment in my mind.   I don’t even remember what I felt depressed about but my guess was that I felt no one seemed to have the urgency that I felt was needed when it came to fixing my brain so that I could get back to work and get on with my life.  I was desperate for answers and hoped that there would be something on the bookshelf that could help me.

When I say that I remember “reading” Dr Osborne’s book that is not quite correct.  I remember the book, that part is correct.   I just wasn’t able to do what I would call “reading” at the time. So looking in a bookstore for a book about brain injury wasn’t something I thought to do — I avoided books.

I couldn’t really read, and whatever you’d call what I was doing–looking, skimming, taking in what I could–I could not do more than 2 pages at most at a time.

While I cannot say that I was aware of what was wrong with me after my injury, I was aware that I couldn’t absorb what I was reading.  I noticed that while trying to read Time Magazine in the waiting room for one of my doctors.

So looking at and taking in just a little of the text that Claudia Osborn had written made me sob.  Not just cry but sob.

I felt that Claudia Osborn was able to articulate all the things that I would say if I could tell my story.  I felt that she was telling my story even though her injury was different.  And she found access to doctors and resources after her injury.

From reading her book, I knew that Claudia “got” what the injury was like and that she could describe it.

That meant there was at least one other person in the world other than me, who got it.   And she could articulate in print what her experience was like.  Which I couldn’t at the time.

So when my new friend reached out after reading my story in The Washingtonian Magazine, I wanted to help her get to good medical care. I wanted to help her so that her journey would be a little shorter and perhaps a little more efficient and a little less of a struggle than mine.

And, if her problems weren’t from brain injury, I wanted her to get to doctors who were knowledgeable enough to know that persistent symptoms following brain injury was not her problem, and not a doctor who wasn’t knowledgeable enough to clear her appropriately.

You see, in my journey,  I have learned that some doctors really understand brain injury and patients are lucky to get to them.   However, many doctors were not sufficiently trained and hence are not sufficiently knowledgeable about concussion or about persistent effects following concussion.  Doctors who are not sufficiently knowledgeable cannot help a person who actually needs further medical care for their symptoms to get to the right place. Another frequent error that I have learned that some doctors can make is to tell the patient that their symptoms are definitely not a brain injury when they are not knowledgeable enough to make that determination.

How have I learned this?   I have learned this through my experience first and foremost. Although I desperately needed rehabilitation, I had quite a struggle getting to it and there were many barriers and pitfalls along the way.

Getting to appropriate specialists and getting to rehabilitation turned my life around.   So I am going to be brazen here and say that if I had gotten to that same rehabilitation earlier and in a more consistent and less piecemeal fashion, it would have been beneficial to me both in terms of my health, my productivity, my well being and my finances and my livelihood.    (It would also have been beneficial to my  health insurance company’s finances!).

I also know this from hearing countless stories from others who cannot find the health care they need, or worse, who are being told they are malingering, even as they seek care.

I also know this by talking to health professionals and from volunteering at the Brain Injury Association of America and talking with staff members at WETA/Brainline in Washington DC.  I know it from my work with the American College of Rehabilitation Medicine and from my work with the Ontario Neurotrauma Foundation.

The researcher in me also knows that there are several academic studies that provide more objective evidence about the pitfalls of getting to care. However, citing those studies right now on this blog is a little of a leap of faith for me because I don’t have the memory skills to find the studies and I am still struggling with learning what research I feel comfortable talking about and what I do not yet feel comfortable with talking about.  I am still not very organized, and even 2 1/2 years after my move finding and citing the research is still a task that I have not had the time to master. However, I am hoping that providing research citations is something that someone will help me learn soon.

What I will say from my experience is that many survivors, just like me, do not know that they are not getting to appropriate care after mild traumatic brain injury.   And it may well be the case that most survivors of mTBI do not get appropriate help.  As I said in my speech at the Congressional Briefing in 2011, the estimates of the annual number of people with brain injuries that are not identified in the US exceeds the number that are identified.   That is an astounding graphic!  (I just looked for the graphic on the Center for Disease Control and Prevention (CDC) website and cannot find it, else I would post it!)

Many, like me, are not even counted in the statistics on mTBI.   People with mTBI are not counted in the CDC statistics because we either were not treated in the emergency room or our injury was not identified in the emergency room.

Its impossible to study directly how well those who are not counted in the CDC statistics are treated, if at all, and how complete their recovery is or is not.   I think that is a fair statement.

 

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

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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.

 

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Vision therapy — Part 1

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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!

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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.

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March 12 is Brain Injury Awareness Day on Capitol Hill

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

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

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

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

There are four parts to the day:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is the agenda for the day:

Brain Injury Awareness Day 2014

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

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

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

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

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

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

 

 

 

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I did not know how damaging concussion/mild traumatic brain injury could be

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You would hardly think that I would be the person telling you that getting the best treatment for concussion is important and that not everyone gets appropriate treatment for concussion in the U.S. (or Canada and other countries for that matter).   When I had my concussion, I had the life that I loved to live.   I didn’t have time for a concussion and I really did not have time for persistent symptoms.

Frankly, I didn’t know how damaging a concussion/mild Traumatic Brain Injury could be when I first had my concussion, and neither did those around me.   I was in a car accident by the Lincoln Memorial in Washington D.C.   I was driving and trying to merge onto Rock Creek Parkway when I was hit from behind.

I was coming off a ramp from the Memorial Bridge across the Potomac River and the road I was merging into runs very close to the path of the ramp.    To merge, I had to move my head as far to the left as possible to look over my left shoulder at the light on the road I was merging into to see the cars.   When my car was hit by the jeep behind me, my head went from side-to-side and then back to forth (called a coup-contre-coup).

My brain was shaken inside my skull.  Neural pathways were either stretched or broken.    I may have  lost consciousness briefly.

I did NOT hit my head on the steering wheel or the windshield.  I did NOT have a coma.   There was NO blood.

I did have headaches when I went to work on Monday, so my colleagues suggested that I do to the doctor after I told them I had been in a car accident.   I was not making that connection myself.   When my symptoms worsened, my doctor sent me to a neurologist who diagnosed me with mild traumatic brain injury.   I did not understand what “traumatic brain injury” meant or could mean to me.   I felt comforted by the word “mild”.   At least I knew what mild meant–short lasting and not very bad.  Or so I thought.

When I first saw the primary care doctor and then later the neurologist, I was fully expecting to continue my life as I knew it.   I loved my work and had exciting research to do.   I had my sports that I loved (coaching kids soccer and playing volleyball) and I had an active social life.

I remember being bummed at the thought of waiting for a couple of weeks to return to sports.   When I first saw the primary care doctor, he said he wanted to keep me under observation.   He said not want me to play volleyball until he cleared me for it because he was concerned I might jostle my head further.  I was bummed because sand volleyball season had started on the Washington Mall and I had already been waiting until the kids soccer team’s season ended before I started it.   The previous year, our sand volleyball team won the trophy for the league and I was looking forward to playing again.

But my life did not continue as I expected.  In fact,  far from it.

And so here I am telling you, about 15 years later, about my experiences with trying to recover from concussion/mild traumatic brain injury.

My experiences have led me to know first-hand that:

–there can be persistent symptoms from concussion/mild traumatic brain injury,

–that it’s really important to get the best treatment possible to minimize the possibility of long term symptoms, and

–that it can be quite difficult to get appropriate treatment for concussion/mild traumatic brain injury around the world.

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Helping others has led to my participation in developing guidelines for symptoms from concussion/mTBI

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Starting last October,  I participated with other experts on concussion/mild traumatic brain injury on a consensus panel to update guidelines for Health Professionals about how to treat adult patients with short-term symptoms and persistent symptoms after concussion/mild traumatic brain injury.

It feels great to be contributing to guidelines that will improve care for patients with mTBI/concussion.   It gives me hope for the future.  And it makes my difficult experience with finding appropriate resources for recovery alittle easier knowing that I can use my knowledge and experince to help others.   I worked on the first edition of the guidelines, starting four years ago, and and now the update or second edition.

Ontario Neurotrauma Foundation (ONF) in Canada has sponsored this work.   As far as I know, these are the only systematically developed guidelines (in the world) for general Health Professionals on how to treat persistent symptoms for adult civilians.  It also contains information about how to treat symptoms right after they occur that have been developed in Australia, New Zealand, Canada and the U.S.

The second edition of the guidelines were published in September 2013 and can be found here:

http://onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

The guidelines are written for Health Professionals, but you can read them too.

As a PhD, I am trained to understand the importance of high quality research versus other evidence and thus I am able to use some of my pre-injury skills for this work.   As a patient I am able to contribute from my experience and from the many mistakes and pitfalls that I have either experienced myself or heard about from other survivors and their families that I have met in my journey.

Guidelines

Here are five reasons why these guidelines are important for patients (consumers) and their families and friends.

1) The guidelines take concussion/mild TBI seriously.

2) They are a compilation of current knowledge about what to do in the short term after a concussion for civilians.  In other words, they educate and provide guidance to Doctors about how to take symptoms seriously.

3) The existence of guidelines about persistent symptoms from concussion/mTBI is acknowledgement that some patients (consumers) have persistent symptoms and that appropriate treatment can be helpful to these patients.  Not everyone gets better from concussion immediately and those who don’t get better need treatment.

4) They are a compilation of current knowledge about what to do for patients with persistent symptoms.

5) The guidelines can be used in any country although they are written for the Canadian Health Care System.  They can also serve as a model for the development of guidelines in every country.

The guidelines were just presented last week at the American College of Rehabilitation Medicine annual conference in Orlando, Florida.   Hopefully we will be hearing more about them.    I have alot more to say about them in the next posts.

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