treatment

Optimizing my brain functioning — my new monitor!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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My “Ah Ha!” moment — What I wanted to know about how to recover and rewire after my injury

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I had an “Ah Ha!”  moment about my posts this past week.    With my brain the way it is now, I have to learn more by doing as opposed to thinking things out ahead of time.   Often,  I just have to get going on trying something new, like writing this blog.   Once I have have practiced at it abit, it comes to me where I am trying to go.

My “Ah Ha!” moment was that all my posts have been about trying to describe my “new normal” from the perspective of many years out after my injury.    You can go back and look at them.   Some are about some of the gains that I have made long after my injury–like driving and speaking to the media and how practice has helped me.

Others have been about some of the work I still have to do to stay on balance.

These have been descriptions of different aspects of my “new normal” !

So far, I have talked about how I have hope because I know how to rewire my brain and recover more functioning.  This is called neuroplasticity (and I will come back to it).    Overall, I know that neuroplasticity is working for me —  I am still getting better and the evidence that I am still getting better gives me hope that I will continue to do so.

I also know that I have persistent symptoms following concussion/mild TBI and that I am not “well” and that I need to work hard using my self-awareness, using the compensatory strategies I have learned from doctors and professionals  (in and out of outpatient rehabilitation (which it took years to get receive)).   I have also learned from self-care, from managing and respecting my limitations, and all my strategies to cope with my injury long after the initial “acute” injury–the actual swinging of my head from back to forward and from side to side (referred to as the coup-contre-coup).

And when I am on top of my game, I have to work at it very hard, but my life goes okay and is meaningful.  And my life is getting better at a slow, but overall, sure rate.  I have had long-term recovery and rewiring and it continues (although at a slower rate than I would like, but better than no rewiring at all)

And when external things come up (like they do in life) or I get sick  or I get out of balance for whatever reason, then I need to step up my work to get myself back in balance.    Sometimes I am unaware that there’s too much on my plate or I need “to be cued” to compensate for them and sometimes, it takes me awhile to recognize that I am off balance and I fall “off my game”.    This is part of life.

When I am off my game, my life can become intolerable and I am irritable and cranky and I can get down and depressed and at some times, when it gets really bad, I simply don’t want to go on.  So I know I want to do everything I can to avoid getting in to that “trough” or valley or even getting near it.    At this point in my recovery, I have learned alot about how to manage this downward cycle that I would describe like an airplane in a tailspin.   I know I need to use all my strategies to keep me from getting in a tailspin and if I am unable to avoid getting in a tailspin or do not recognize the tailspin until fairly late, then I must use them to get out of tail spin as soon as I can.    I have a list of things to do to pull me out of a tail spin and reminders to be patient because it takes time.

I think everyone’s life has its ups and downs that may need to be managed abit.   With persistent symptoms following my concussion/mTBI,  I have learned that my issues may just be more extreme.  Some of the strategies that I use might have been helpful for me prior to my injury.  Now they are critical.

And that is a rough description of some of the things that come to mind in describing what my “new normal” is like.

 

 

 

 

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