treatment

Comprehensive Management of mild TBI

aforrest Leave a comment

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

–EEG

–Imaging

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

–headaches

–visual disturbance

–mood alterations

–behavioral alterations

–vertigo

–imbalance

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.   www.onf.org.

 

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Finding the Best Doctors

aforrest Leave a comment

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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Listening to my body

aforrest Leave a comment

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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“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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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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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.

 

 

 

 

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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!

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Awareness and mild traumatic brain injury/concussion

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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.

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The Value of Rehabilitation

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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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