Diane Rehm

Validation, Recovery, and the Diane Rehm Show

I listened to the Diane Rehm Show on “New Treatments for Concussion” last month.  It inspired me and validated me and I cannot say enough good things about it.

Diane Rehm is a nationally syndicated talk show from WAMU in Washington DC.  Here’s the link to the show.

http://thedianerehmshow.org/shows/2015-06-04/new-treatments-for-concussions

I want to tell you why I thought the show was really helpful to me and other people with persistent symptoms following concussion that I have communicated with during my speaking engagements or whom I have met during my advocacy work or online.

I have so many good things to say about what I heard on the Diane Rehm Show.   I want to focus on several aspects of the validation and hence recovery that I received from listening to the show.

First though, I want to step back and talk about my perspective before I listened to the Show, in order to then tell you what the show meant to me.

The need for validation after brain injury

Dr Cheryle Sullivan, MD, a colleague and a friend who lives with persistent symptoms following concussion and who writes and speaks about managing them, said something to me earlier this year that has stuck with me.

She said “we (people with brain injury) need validation”.

I found her acknowledgement of this issue profound because of who she is.     As an MD and as someone with persistent sypmtoms, she recognizes that the lack of validation that many people with persistent symptoms after brain injury (both concussion and those who have had comas) has an impact on people with this injury and the impact is not a positive one.

From my perspective as a PhD and as an advocate for people with brain injury, I see that link and I think it has a negative effect on recovery.

Why do people with persistent symptoms following brain injury need validation?

Here are the first five reasons off the top of my head why the need for validation:

(There are so many reasons, I am sure there are more!)

1)  It is difficult to get support for recovery from friends, family, employers, co-workers, neighbors and others, when people who are in the position to support us with persistent symptoms do not understand how the injury can affect us and do not know what to look for or how to evaluate what they see.   I know after my accident, many expected to “see” my injury and many thought they knew what they should be looking for but did not.   Recently, Amy Zellmer has written about this eloquently in the Huffington Post.  Here’s the link:

http://www.huffingtonpost.com/amy-zellmer/5-things-every-tbi-survivor-wants-you-to-understand_b_6800984.html

2) It is often difficult to get appropriate medical care when we aren’t able to articulate what is wrong, and don’t have the support.

Right now, there is no biomarker for concussion.  A doctor must diagnose it.   Usually a neurologist or sports medicine doctor or physical Medecine and Rehabiliation doctor makes the call.

I have known many people who thought they were cleared and either didn’t have a concussion or who were “well’ following concussion.  I know many people cannot get a referral from their primary doctor to get to the medical professional who can make this call.

And I have known many people who were misdiagnosed as having a mental disorder (anxiety or depression).

I was an expert consensus panel member for work by the Ontario Neurotrauma Foundation (Canada) to develop guidelines to teach primary doctors how to recognize concussions and refer appropriately because doctors there recognized that Primary Care Doctors needed better information.

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

I am fortunate that my neurologist in DC recognized that I had a mTBI, within a month after my car accident and that the primary care doctor I saw did keep me under observation and referred me to a top neurologist in DC where I lived at the time.  I thought the fireworks I went to watch on 4th of July were going to fall out of the sky and on to my head, and I couldn’t recognize a co-worker I worked closely with at that event.  We had gone to watch fireworks on a hill, overlooking DC, in a more quiet environment, and had run into my co-worker and his family there.

I am also fortunate that my neurologist taught me that “anxiety and depression” go with an injured brain.  They are secondary effects for many.   The injured brain “knows” that it is injured and responds to keep us safe as best it can.   Of course its anxious as it cannot protect itself as it could before.  Of course its depressed because life is harder and it cannot do what it used to do.  And I would add that it was depressing hearing what I heard at the time of my injury which was no treatment, and there is a limited period of time for recovery (I was told 2 years).

Dr Sandra Chapman, a neuroscientist, recently wrote about the issue of how long one can recover after brain injury.

Dr Chapman’s work shows that one can can recover with appropriate rehabilitation years later.

http://www.huffingtonpost.com/sandra-bond-chapman/changing-a-common-belief-_b_7588400.html

We need more studies tracking recovery for longer periods of time to know more.  But I am pleased to see this work trying to change a common belief that often limit’s people’s ability to recovery.

If you don’t think you will get better, or if your doctor tells you that you cannot, you are likely not to try.  It can be a self-fulfilling prophecy.

Dr Allen Brown, at Mayo Clinic told me that one factor that limits recovery that is true for many injuries (not just brain injuries) is information from a doctor telling a patient that its not possible to recover or that there are specific time limits.

3) I had undiagnosed aphasia (difficulty with speech–word-finding and concept finding and I couldn’t figure out what was the topic sentence anymore in a paragraph).  So I needed to advocate for myself to get treatment beyond just the diagnosis but the very injury itself stands in the way.

Dr Elliott spoke briefly about the difficulty of having to find treatment for concussion oneself (while injured) on the Diane Rehm Show program.   He says (and I am paraphrasing) just trying to live, raise his kids, keep money coming in the door and develop strategies for continuing his work as a professor, meant that he had limited time to find his rehabilitation and he didn’t know where to turn when his doctors told him he couldn’t get better.   Like me, he is a PhD.  I remember thinking 6 months in to my injury, if this is how hard it is for someone like me, who started with many advantages in life, to get the help I need to get better and to be able to return to work, what’s it like for someone who didn’t have these advantages?

4) After I wasn’t “well” after not getting treatment for my concussion, I began to hear “suspicion” from some medical professionals that I that I sought out to help me.

Fortunately, I had gone to see Dr Thomas Kaye at Rusk Institute in New York, about help with my recovery.  He was recommended by Dr Morton Percoff my friend’s Dad who knew brain injury after his son’s tragic TBI.  In talking with Dr Kaye, it was clear that he could see that I needed more help.   Working with him, it was clear to both of us that I needed to find the right doctors in DC because NYC was too busy, I had no money.  I couldn’t imagine moving to NYC, even temporarily, no matter how desperately I needed care.

I didn’t realize how hard it would be to find people in DC to help me.  Dr Kaye knew I needed help and he had contacts in DC.   I was already getting better from my vision therapy, but I needed more.   I needed more help from other professionals.

But finding the right people in DC was hard for me because the injury stood in my way and I did not know best strategies yet as to how to navigate.

When I met what I considered resistance to helping me with brain injury recovery, I wondered how did people expect me to get better without treatment?   From inside my brain injury, I still had some logic going.  If I am coming to you for treatment because I want to get better, why aren’t you sympathetic to that fact?   Why aren’t you looking at my case and saying she needs more treatment to get better?  And if you don’t believe me, why not consider that my doctors already thought I did which is why I was coming to you and that their opinions ought to count for something?

Despite setbacks with doctors and with my recovery, I was persistent and I got better.   I know in retrospect that brain injury rehabilitation has worked!   If I weren’t getting the right treatment, one would not expect it to work.

It’s hard to need treatment, seek it out, and then be told “maybe you don’t want to get better?’

This is what I heard from a doctor who was recommended to me.

I also heard “you can walk and talk, what more do you want?” an offhand comment from a medical professional.

I didn’t feel seen by medical professionals as to who I was when I heard these comments.

And seeing professionals who said things like this didn’t make me want to seek more medical care.  I felt I had to really work hard to get my courage up to see a new medical professional during years 2  through 5 because I knew the appointment could go completely wrong.  Later, I both had more skills to advocate for myself and I found more and more doctors who were sufficiently impressed by my recovery so far to know how hard I was working at it, or who understod brain injury recovery and the faults of our current medical system following concussion that they knew that I wasn’t getting better faster because I wasn’t getting treatment.

5) I heard from many people that concussion symptoms only lasted for 6 months at most.   And therefore if I had symptoms longer than 6 months, I must not have a concussion.   While I couldn’t access alot of my economics skills, I had enough logic and enough training to learn that sometimes the lack of research is misinterpreted as proof of something that cannot be proven until it is better researched.    As I investigated it, I found that not many quality studies had been done following concussion as to how long symptoms lasted.    Years later, after I got better, I heard Dr Barth from the University of Virginia at Charlottesville talk about the seminal work they had done in the early 1980s on people who had persistent symptoms after concussion in the UVA teaching hospital.   He found that there were a group of people that did not get well (after hospitialization) and he began studying them.  They had brain injuries.   Later, he began studying athletes on this issue.  Everyone knew that athletes wanted to get back in the game after injury.  Its fascinating to me to know that they are finding that about the same percentage of athletes have persistent symptoms even after they have close supervision for recovery (i.e. support for recovery and medical attention to help recovery).   Please see the citations to Dr Barth’s early work regarding my summary of his research (at bottom of page).

And I haven’t even mentioned that Dr Hudson and Dr O’Shanick spoke to the difficulty that people with persistent symptoms have getting help after concussion and the acknowledgement that many are mistakenly seen as malingers when they try to find the help they need in the medical system.

I have so much more to say about this show!  Another blog.

Thank you so much to Dr Clark Elliott (Computer Science), Dr Korin Hudson (Sports Medecine, Georgetown) and Dr Greg O’Shanick (Emeritus Medical Director of the Brain Injury Association of America and Director of a Concussion Clinic in Virginia) and the Diane Rehm show.

http://thedianerehmshow.org/shows/2015-06-04/new-treatments-for-concussions

 

Citations from Dr Barth regarding his work:

Rimel, R.W., Giordani, B., Barth, J.T., Boll, T.J., and Jane, J.A., (1981). Disability caused by minor head injury. Neurosurgery, 9, 221-228.

Barth, J.T., Macciocchi, S.N., Giordani, B., Rimel, R., Jane, J.A., and Boll, T.J. (1983). Neuropsychological sequelae of minor head injury. Neurosurgery, 13, (5), 529-533.

Barth, J.T., Alves, W., Ryan, T.V., Macciocchi, S.N., Rimel, R., Jane, J.A. and Nelson (1989). Mild head trauma in sports: Neuropsychological sequelae and recovery of function. In H.S. Levin, H.M. Eisenberg and A.L. Benton Mild Head Injury, New York: Oxford Press, 257-275.

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Daniel Church Drawing

Practicing Medical Resiliency

Oh my gosh!

Its been a while since I have posted.

I have been practicing my medical resiliency skills after my talk at SXSW.

Let me start by explaining what resiliency skills are and why I needed them after my brain injury.

Medical resiliency skills

The picture for this post is one that my son drew while we were listening to a talk about dealing with life’s ups and downs.

If you look at the picture for the post, you will see that my son’s drawing has a stick figure moving up the ups and downs (in the middle of the picture).

I chose to use this picture for my SXSW talk and for this blog post because it looked remarkably similar to a picture my speech and language therapist, Liz Joiner, at St Davids Hospital here in Austin drew for me on a white board when I started rehabilitation with her.

At that time, she explained that life has its ups and downs.

She told me she would teach me strategies to help me:

1)  manage life’s ups and downs better with my brain injury

2) manage them in such a way that my life got better (which is upward in the picture).

From my perspective, my son’s picture represents the path that every person hopes so that the stick figure applies to everyone trying to manage their lives.

The picture Liz drew was one for me in particular.

The difference between me and every person is that learning and practicing these medical resiliency skills are critical to my life.

They may be optional for those who don’t have the medical and functional issues I have after my brain injury.

Before I got to inpatient rehab with Liz over 3 and 1/2 years after my injury,  I couldn’t manage my life despite all my best efforts and hard work to do so..

What my life was like post-injury before I was taught medical resiliency skills:

Usually, I wouldn’t notice I was in one of life’s downs, until afterwards, because I lacked the ability to anticipate what would happen next.

Life is ups and downs.

However, once I hit one of life’s downs, it would often turn in to a downcycle where things kept getting worse.

And, that cycle would often lead to a tailspin downwards.

My life would begin circling downwards at a faster and faster rate. like a plane shot down and circling downwards before crashed to the ground.

As I say in my speeches,  I was working really hard to manage my life to keep my life from going from bad to worse.

I was working much harder than I had ever had before in my life.

It took more energy to do basic things because my brain was damaged.

So I was often too tired to function.

And my cognition was impaired.

Although I did not understand it at the time, my fatigue made my cognition worse.

Being in a tailspin required added urgency to level out the plane (and my life) so that I could function.

I couldn’t manage the downs.

Once I started in to a tailspin, I would have difficulty sleeping (too tired to sleep!) and so my cognitive symptoms would get worse because I was not getting sleep.

I would often get depressed that I couldn’t manage my life (no surprise there, who wouldn’t!)

Eventually, my immune system would get depressed.

With a depressed immune system, I was more susceptible to colds or flu, especially in the winter in Washington DC.

Once I got better, I had less energy and enthusiasm for starting over and trying again to get my life going, knowing the tailspin I just had.

Now I can see that it’s harder to get out of a tailspin once it starts.  It takes energy and brainpower and good doctors.

So, I am very grateful that I was able to get out of tailspins eventually with the help of my medical doctors and complimentary care doctors.

However, it was no life at all, living from one tailspin to another.

How would a tailspin get started?

Usually through unintentionally overdoing it.

I did not yet have awareness as to what was overdoing it, although I was learning some awareness through my vision therapy exercises and my work with Dr Franke, my vision therapy doctor who would review with me my activities at class.

Sometimes, events outside my control would through me into a tailspin.

For example, I had to get Independent Medical Exams with doctors assigned to me by insurance carriers during the first few years of my injury.

Often those exams were so taxing on me that I they would throw me into a tailspin.  (More on that later!)

And often I found that they were simply a distraction to my recovery as well as time and energy away from my recovery rather than helpful to my recovery.

But that’s another blog post.

Back to medical resiliency skills.

Medical Resiliency Skills: 

1) Be aware of life’s ups and downs and how they can worsen with injury or illness.

2) Learn to plan for life’s ups and downs.

3) Develop “go to” strategies to employ to prevent things from getting worse in a downturn.

(Some of these “go to” strategies are general, some may be unique to you)

4) Develop strategies to even out the ups and downs and to keep on going when times are bad.

5) Learn from the last downturn to develop awareness that may be needed to develop better strategies to minimize the next downturn.

6) Learn from the upturns that there will be a downturn, and that is okay.

7) Learn that healing is not linear.  In other words, healing is not a straight shot upwards, its an up and down and the goal is for the ups and downs to go in an upward direction overall.

So that if you drew a straight line through the average mid point, you would find that it moves upwards (representing life is better or easier or more functional)

8) Learning to reflect back at the trend and recognizing how one’s life is getting better or easier or more functional.

9) Celebrating progress, if there is progress.

10) Getting help (either medical or help with lifestyle changes) if there’s not progress overall.

11) Learning that there may be big setbacks.   Last summer was an example for me of a major medical setback.

 

Suffice it to say that after all the hard work I did leading up to the SXSW talk, I knew that I would be tired, that I would need to rest.  And that I would need to relax and listen to my body.

I pushed hard to do the speech and I knew that “the piper would need to be paid”.   In other words, that I could ask my brain to push a little harder than I normally do (but not too much), and I would need to compensate for that extra pushing in the short term by resting and relaxing until I replenished myself and my brain afterwards.

Let me explain that further.

Since I was preparing a new speech for a new audience (a smart and tech-savvy audience), I knew I needed lots of support and lots of help from my village as well as support with developing the speech.

I had great help from two writers in particular, Thatcher Freund and Katie Matlock (more on this later).

But because I was doing something new, I couldn’t anticipate ahead of time all issues that would arise in preparing a new speech (more on this later).

Looking backwards, I was not able to anticipate how much bandwidth (energy and brainpower) it would take for me to do my part in preparing the speech and giving it.

After the speech, I have needed to rest and practice my medical resiliency skills.

Do you know about medical resiliency skills?

Do you use some of these skills but do not call them resiliency skills?

Which ones do you use?

How did you learn these skills?

 

 

 

 

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Seagull

SXSW & Brain Injury Awareness Day Technology

I gave my speech at SXSW yesterday.

I am soaring.

People really liked it.

I am also exhausted.

Here’s the info about the speech, if you haven’t already seen it.

http://schedule.sxsw.com/2015/events/event_IAP41233

I will get the content of my speech on the my blog as soon as I give my brain appropriate rest!

Its Brain Injury Awareness Day on Capitol Hill.

POPVOX, a technology to communicate with your lawmakers in Washington, has created an issue spotlight for Brain Injury Awareness Day:

https://www.popvox.com/blog/brain-injury   

You can use this technology to tell your story briefly to your Representatives and Senators!!!!

Please use it to communicate with them today or this month for Brain Injury Awareness Month!

Brain Injury Association of America Briefing Papers here:

https://www.popvox.com/stakeholders/biausa

Please tell your lawmakers why devoting resources to brain injury research and recovery is important to you.

And ask them to join the Congressional Brain Injury Task Force, if they are not on it already.

 

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SXSW 2015

I am speaking at SXSW

I am excited to be at SXSW – Interactive Festival here in Austin tomorrow.

For those of you that don’t know what SXSW – Interactive is its a large festival of smart and savvy people interested in technology and creativity.   I have noticed that over the last couple of years, more and more people have been talking about the brain and last year there was a panel on sports and the brain with Chris Nowinski and others.    Chris is a person with a brain injury who is also a leading advocate for sports concussion and a role model for me.

I proposed a session called “Welcome to Your New Brain: Lessons from Concussion”, and I was accepted!

Its the first time that I will speak to this type of audience and I am excited about that.

The talk is tomorrow.

Here’s the link for more information about my session (Tuesday March 17 at 11:45 at Austin Convention Center):

http://schedule.sxsw.com/2015/events/event_IAP41233

I plan to put information about it on my website and on this blog after the speech and on this blog, so stay tuned

Here’s  information about all Health and MedTech talks that are being held this year.    If you are interested, you can look up the other brain-related and brain-injury talks that are here this year.   Very impressive.

http://schedule.sxsw.com/events?all_theme=Health+and+Medtech

 

 

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Bruce Alterman Memorial Webinar Series

New Webinar series at BIAA by people with brain injury for their peers

One of the many highlights of this week, was getting to listen to Maria Romanas, MD PhD talk during a Butch Alterman Webinar through the Brain Injury Association of America (BIAA).

The webinars are FREE.   You must register for them.    You can download handouts even if you did not watch or register to watch.

I will provide the links at the end of this post so that you can learn about future webinars, and download handouts from past ones.

Before I write down what I learned from the webinar last week, I want to step back and explain about this new webinar Series through BIAA.

The Butch Alterman Webinar Series:

The Butch Alterman Webinar series is a relatively new series.   It was started in 2014 and there have already been 4 webinars (including Maria Romanas’s)

It is a webinar series for people with brain injury by people who have gotten better after brain injury and who have been selected to share their understanding, strategies or knowledge from their journey and from their hard-fought experience and learning about what helped them.

The series was created by Mo Alterman, in memory of her husband, Butch who had had a brain injury.   Butch Alterman was a teacher by profession.

After he died, the series was created by his wife to honor her husband’s belief in the importance of teaching.

I am fortunate that I got to meet Mo Alterman years ago.   Mo was the President of the Board at BIAA in the early 2000’s.   I started volunteering at BIAA in about 2003, after  we returned to Washington DC.   At the time, I could not get help matching the skills I had post-injury with a job opportunity.   After I met Robert Demichalis, a volunteer at BIAA, he invited me to share his office and use a second desk in his office.   I thought it would be a great opportunity to learn what job skills I actually had and learn about the Brain Injury Association of America.

Back to Mo.   I was impressed by her because she was tough and outspoken and a tireless advocate for people with brain injury.  She believed in the importance of improving the lives of people with brain injury.   Of course, she was not alone in that belief at BIAA, it was just that she was passionate and I “got her” immediately.   My experience working with the staff and people who volunteer their time and energy to BIAA is that they all want to improve the lives of people with brain injury.   I have over 10 years of experience volunteering at BIAA and I have both received tremendous support in my journey to recovery and I have learned an incredible amount of helpful information from them.   I have also contributed from my perspective as a person with brain injury  in many ways.   (My volunteer work is another blog post which still needs to be written!)

One last thing about Mo.   I felt very drawn to Mo as a leader, just like many others did.   Her dedication and passion were inspiring.   And her knowledge about brain injury and her own personal journey to help her husband get the resources he needed were obvious in her command of  the issues.

Here are the links to get information and register for the Butch Alterman Webinars:

Some tips about the links and technology:

With my cognitive and visual issues from my brain injury, I often have a difficult time finding information on many websites.   To summarize, I often cannot even find where on the website the information I need lives, trying to find it may increase my frustration to intolerable levels, and I leave the website empty handed, frustrated, and angry.   Worse, being on a really busy website may set off headaches or other symptoms and depending on the stage of recovery I am in, and thus I may have to get emergency cognitive rest, or change my day in order to get over the damage that the busy website has done to my wellness.

On any given day, I can have problems with the Brain Injury Association of America’s website because it is very busy.

So I want to help others who may have some of the same issues with finding and using what they need on websites the information that may help them.

Having been empowered by my accessible technology team at Cognizant and my advisor, Joseph Karr O’Connor, I want to pass on what I have learned so that you may be able to take advantage of this excellent Webinar series at BIAA and the resources that it makes available to you.

Before you click on any of the links below, please read through to the bottom so you will know what to expect.

Writing down the steps before you press a link may be helpful.

Writing things the steps for yourself on a blank piece of paper will help imprint the steps in your brain.

You may want to rearrange the steps once you have written them down,  depending on what makes sense for your deficits and the way your brain works.

And remember, in trying to sign up for a webinar, you are both doing something new and trying to follow many steps.

Give yourself plenty of time and space to do this, and recognize that you may not get it right the first time, and that is okay.

As Dr Maria Romanas will tell you in her talk, doing anything that is new, is harder.

As Dr Maria Romanas recommends for starting any new task,  take two deep breaths before you try to execute these steps.

And remember, that people with out brain injuries, may have a difficult time following these steps as they may not have been optimized as well as possible for someone learning for the first time and finding the right buttons.   I know that my husband, someone who works in on-line technology has told me that often websites will say press here, and they have not put a button on that page to press.   Frustrating for anyone even if your brain works fine.

Below is the link that tells you about the Webinars series:

Click on it.

http://www.biausa.org/education/altermanwebinars

If you want to register for the Webinar:

Click the link below.

http://www.biausa.org/biaa-events.htm

Once you have clicked on it, scroll down to the midway down the page until you find the upcoming Alterman Webinair.

If you want to download handouts for the a Webinar, or a past one:

Click on the link below;

http://www.biausa.org/education/altermanwebinars

Scroll down to the heading that says Recording and Handouts of Previous Alterman Webinars.

Click on first link after the webinar handouts that you want.

Lastly, I have learned the trick of using Google to search the BIAA website.   I put “Butch Alterman Webinars at Brain injury Association of America” in the search bar and that worked.

I need your feedback!

Do you have problems with searching and finding information on websites?   Please leave me a comment and describe tips that help you.

Also, I will have to think about what the best way to give these links and improve them.  Please give me feedback if you were able to use them or better ways to write them so that they are easy to go to.

Having tried to make my website more accessible, I know that sometimes finding what works best is trial and error and I would like to learn more about what works best.

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2015 New Year

2015

Happy New Year!

I am learning how to use my new, more accessible, website.

I asked my husband to teach me how to post pictures.  I needed reminding about where to find pictures, and he looked and found 3 pictures about the new year.

Eventually, I choose this picture.

I liked the the technological aspect of the New Year.   Based on the end of last year, I think I will be learning about how to increase my use of technology this year.   Working with my very knowledgeable team during the Knowbility Open Air Contest taught me many new things about accessibility and about my website.   It will take me practice to learn some of the new skills such as writing more accessible posts, even now that I have more of an idea of the resources that can help me with that.

The other reason I choose it was that the New Year has started in a rather blurry fashion for me, once I thought about it.   I liked that the 2015 in this picture is not sharp and distinct but blurry and less distinct.

You see, I ended 2014 feeling very empowered by the work on my website that my team and adviser and my husband and I did.   My entire team moved my website forward and helped me in ways that I did not even imagine they could, prior to the contest.

Perhaps anyone working on a website would benefit from others teaching them better ways to express themselves on their website and reflecting back to them suggestions for improvement.

For me with a brain injury, learning to pay attention to others feedback and incorporate it into my world view has been an essential part of the skills I have learned in rehabilitation and outside rehabilitation that have helped me recover as far as I have.

So having my entire team reflect back how they saw my mission and my logo and my site was very powerful for me.  The most meaningful thing that I can say is that I started the contest with a logo of a brain with a band aid on it and ended the contest with a logo of a healthy, growing brain.   I felt empowered in many ways, but most importantly I no longer identified with a brain with a band aid on it and instead I realized that I felt a sense of integration and wholeness, such that I could identify with a healthy brain.   That is what my journey has been.  And once a integrated and whole brain was reflected back to me, it was obvious to me that that was the way I felt about my journey and my brain, now.

Wow!

I felt incredibly empowered!

And then, the blurry part of 2015 that is in the picture came next.

Right at the end of December, my husband got the flu.  We had a nice New Years Day with friends and family, and then sickness and flu tore through our family–low energy, congestion, fevers, and a lot of work compensating and getting each other well.

The lightest way I can it is that we have been practicing another set of skills this New Year.   We have been practicing resilience skills.

Some of my medical resilience skills are:

–focusing on trying to get well as quickly as possible,

–focusing on keeping things from getting worse once you are sick,

–recognizing that “this to shall pass” and getting as much rest as one needs,

–being easy on oneself while one is sick;

–in other words, not try to push oneself;

–re-arranging any activities and plans that are not critical (bill-paying is critical);

–my cognition was much lower with my congestion so re-arranging activities was critical for me.

I wrote a draft blog the second week of January, and realized I should postpone working on my blog until I had more cognition and more perspective.

So I am inching my way into starting 2015.

But my sense of empowerment from participating in the Knowbility contest has kept my mood high despite not feeling well and the many tasks helping my family while they weren’t feeling well.  And helped me cope with the many rainy and cold days that Winter has brought (unusually many for Central Texas).

And when my son came down with strep throat on Friday, I realized that January may be a much tougher month than I thought.

But I still think 2015 will be a good year!   And a year of increased new learning of technology.

And now I will go learn more about how to write text that is more accessible with subheads and how to edit the alt text for the picture now that I have written my blog.   One step at a time.

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

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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March 12 is Brain Injury Awareness Day on Capitol Hill

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

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

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

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

There are four parts to the day:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is the agenda for the day:

Brain Injury Awareness Day 2014

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

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

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

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

Here’s the link to the advocacy section  of the Brain Injury Association of America website   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

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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Awareness and mild traumatic brain injury/concussion

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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