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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Inspiration and Accessibility U Schedule

Inspiration and Accessibility U Conference

Last month I wrote about learning to manage the ups and downs of life so that hopefully one moves in an upward fashion over time.

Everyone has ups and downs in life.  That’s normal.

What I have found is that after brain injury, the ups and downs often get exaggerated.   There are a lot more “downs” and its harder to get out of the downs because the cognitive and life skill tools that we have learned as adults are part of what got damaged.

What others have taught me in my recovery is that the quicker I can identify where I am in the ups and downs of life — in particular, whether things are getting worse of not , the better I can manage the ups and downs.

Managing ups and downs is a part of practicing medical resiliency.

I have been fortunate to have benefited from outpatient rehabilitation and visual training and some great doctors and therapists who have helped me recovery.  I know how tough my life was like after my injury and before I learned these resiliency skills, so I am very grateful for them.

Even with a “mild” traumatic brain injury I had problems with awareness after my injury.

I was aware of some of my post-injury deficits, but needed help developing awareness of others.

As I developed more awareness of my deficits, I was able to learn strategies to do to improve my situation.

As I got better, I was able to improve my problem-solving and new learning skills, which meant I might be able to adjust a strategy to the situation and generalize more about when to use a strategy.

So how does that apply to my life this month?

Well, when I wrote last month, I thought that I was getting my energy back after resting after my long preparation for my speech at SXSW.

What I learned after I wrote the blog was that I wasn’t doing as well as I thought I was.

Long story short, I realized that I needed more rest.

As you may know from reading my blog, I am prone to err on the side of thinking that I am ready to increase my load too quickly.

And I erred that way again.

Good to know that I am pretty consistent in erring on the side of taking on too much before I am cognitively rested as much as I need to be.

So I made use of my updated awareness and I made plans to rest more, do yoga, slow down.

May is a busy month for a mom, with end of school programs and preparation for summer camps and traveling to the beach.

So slowing down further is going the opposite direction than those around me.

That makes it even harder to do.   But necessary, nonetheless.

So I started to make a plan to take more time to do things I needed to do, get more downtime and more exercise and relax through doing yoga and stretching.

And then Sharron Rush, the Executive Director at Knowbility, a local nonprofit that does web accessibility emailed me.

She was putting together informal lunch time demonstrations so that conference goers could see how people with different disabilities used the computer at Knowbilitiy’s annual Accessibility U Conference.

She already had someone with blindness who uses screen-reader technology to read and tell her what was on her computer.

She wanted me to show and tell how I use the computer given my cognitive deficits.

This conference brings together experts from all over to teach different aspects of about how to make websites more accessible.   Seminars run the gamut from the nitty-gritty how to write code point of view to the big picture how to get one’s organization on board to how to all kinds of new learning about how different kinds of people interface with the screen.

I jumped at the chance to present for two reasons:

1) For me, I know that doing things that inspire me, whether I am in a down turn or on the tough part of the upturn of the ups and downs of life (or not) will help me persist on my path when its especially tough.   Its really hard to go through an extended downturn, and that is in fact when you need inspiration and support most of all, and that is often when its harder to get!

2) Secondly, Accessibility U has also been named John Slatin U, after my mentor John Slatin.   John launched me public speaking career about brain injury when he was the head of the Center for Technology and Learning there.   He encouraged me and spelled out the importance of it and healso through scheduling me to speak about cognitive disabilities to his class at UT in 2001.

So how did I honor my need to relax with the opportunity that I thought would help inspire me?

It required some thought and feeling my way into it and flexibility and problem solving with others.

But I did it!

I had to keep it in my mind that I was doing an informal lunch time demonstration.   Underline informal.

My first thought was to get someone else, maybe Glenda Sims, to interview me.

Glenda worked in accessibility at UT at the time I spoke to John’s class.

Unbeknownst to me at the time, she saw my first speech.

Glenda remembers sitting in John’s class thinking that although I was reading my speech, that there was no way to know that I had cognitive issues.

For me, I had never read a speech since possibly speech class in 9th grade.  Public speaking came easy to me before my injury!

And what was tough for me was that I didn’t actually know what I was saying in my speech, although I had written it with others and had practiced it at St Davids Rehab with a group of health professionals there organized by my speech therapist.

Glenda also remembers that when I finished my speech, I said I would take questions.  I said I would get back to people if I couldn’t answer the questions.

She recalls that I could not answer simple questions about my computer use that 19 year olds asked.   In other words I couldn’t apply knowledge at that point in my recovery.

Glenda said that the contrast between my speech and my question and answer was like night and day, and she could see my injury in the contrast.

I am pleased to say that my demo at John Slatin U went very well.

I shared Glenda’s story and what I learned with John then and what I know now.

I realized afterwards, that I also showed my recovery.

I was able to field questions from 20 to 25 professionals.

In contrast to 15 years ago, I could apply my knowledge and answer questions.

What a gift presenting was to me!

And I got lovely feedback from people who came.

And I got ideas for helping me with the computer.

It was very rewarding and informal and I was please to be able to share my knowledge to help others.

Public speaking gives me back as much as I give!

And because I could do a question and answer now, preparation took less out of me.   A win-win for all.

 

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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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Brain Injury Awareness Month

Brain Injury Awareness Day on Capitol Hill, March 18

One of the advocacy events that I loved being a part of when I lived in the Washington DC was Brain Awareness Day on Capitol Hill.    I have been working hard preparing for the event with a group called the Brain Injury Ambassadors Council.   We are a group of people with brain injury who are interested in raising awareness about brain injury and we have been working with the Brain Injury Association of America to this end.  Many of the members of our group will be present at the event, although I won’t be there this year.

Brain Injury Awareness Day is a tremendous opportunity to advocate to one’s Representative and/or Senators about the issues that are important to those of us who have experienced TBI.

Its also an opportunity to meet other people with traumatic brain injury and their families and to meet professionals people who are passionate about helping people with traumatic brain injury.    The first event of the day is an Brain Injury Awareness Fair where you can learn about what different organizations are doing to help people with brain injury including programs and treatments.     I will post a list of organizations that will be present at the Fair at the bottom of the blogpost

There is also a panel presentation every year to educate Members of Congress and their staffs about brain injury issues.

This year, Mac Fedge, and his mom and caregiver, Kathy Fedge, will be speaking on the topic of “Finding a New Normal”.

I have the pleasure of knowing Mac and Kathy and I know they will do a great job of telling it like it is.   I wish I could be there to see them speak!

Many years ago, Mac and I were both members of the Speakers Bureau at Brain Injury Services of Northern Virginia and I was always very impressed with how hard Mac worked at his recovery and I feel lucky to have gotten to watch and be part of supporting some of that progress.  Go Mac!

And the last event of the day is a Reception where there’s another opportunity to talk and get to know lawmakers, participants and the community around brain injury recovery.

Here’s the schedule for Brain Injury Awareness Day on Capitol Hill on Wednesday, March 18, 2015

Representative Bill Pascrell, Jr. (D-N.J.) and Representative Thomas J. Rooney (R-Fla.), Co-Chairs of the Congressional Brain Injury Task Force in association with the Brain Injury Association of America cordially invite you to participate in the 2015 Brain Injury Awareness Day on Capitol Hill.

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

2:30 PM – 4:00 PM
Briefing: Finding a “New Normal” – Post Injury
Supports and Services that Make a Difference
Cannon House Office Building, Room 121

Bobby Silverstein
Moderator
Principal, Powers, Pyles, Sutter, & Verville

Mac Fedge
TBI Survivor

Kathy Fedge
TBI Family Caregiver

William Ditto
Chair of the NASHIA Public Policy Committee

Matt Breiding, PhD
Commander, U.S. Public Health Service Commissioned Corps
Traumatic Brain Injury Team Lead

David Williamson, M.D.
Neuropsychiatrist & Medical Director, Inpatient Traumatic Brain Injury Program,
Walter Reed National Military Medical Center

5:00 PM – 7:00 PM
Reception Celebrating Brain Injury Awareness Month
Rayburn House Office Building, Room B-33

2015 Exhibitors

 

American Association for Hyperbaric Awareness

American College of Radiology Head Injury Institute

American Medical Rehabilitation Providers Association

American Music Therapy Association

American Occupational Therapy Association

American Physical Therapy Association

American Speech-Language-Hearing Association

American Therapeutic Recreation Association

Association of Rehabilitation Nurses

BAE Systems

Black Box Biometrics, Inc.

Bob Woodruff Foundation

Brain Injury Alliance of New Jersey

Brain Injury Association of America

Brain Injury Association of D.C.

BrainLine

BrainScope Company, Inc.

Brain Trauma Foundation

C3 Logix

Centers for Disease Control and Prevention (CDC), National Center for Injury and Prevention

Control

Children’s National Health System

Drexel University College of Medicine and Society for Neuroscience

DVBIC, DCoE

Federal Emergency Management Agency

Federal Interagency Traumatic Brain Injury Research (FITBIR)

Kessler Foundation

Kessler Institute for Rehabilitation

MedStar National Rehabilitation Hospital

Model Systems Knowledge Translation Center

National Association of State Head Injury Administrators

National Institutes of Health (NIH)/ National Institute for Neurological Disorders and Stroke

(NINDS)/ Eunice Kennedy Shriver National Institute of Child Health and Human Development

National Interscholastic Athletic Administrators Association

National Intrepid Center of Excellence

Neurovive Pharma

Positive Strides

Rehabilitation Specialists

Rusk Rehabilitation at NYU Langone Medical Center

Safe Kids Worldwide

Sport Safety International

Sukyo Mahikari

Triax Technologies, Inc.

U.S. Army Medical Research and Materiel Command, United States Army Medical Materiel

Development Activity 

U.S. Army of the Suregon

United States Brain Injury Alliance

Vista LifeSciences

Veterans Health Administration

Wounded Warrior Project

Read More - Brain Injury Awareness Day on Capitol Hill, March 18

People seldom improve when they have no other model but themselves to copy - Oliver Goldsmith

Empowerment from Role Models

One of the many things that I found empowering working with my Team AxIS and my advisor, Joseph O’Connor was that they used the computer so, well, easily.

I realize the descriptor easily may sound like a funny use of terms.  Of course designers, developers and usability experts would use the computer easily!

And, especially when compared to my computer use.

Because my team knew how to use the computer to create the website that we talked about, I could watch them do things in a short period of time.  What they were able to do was so far beyond my abilities.  I could literally see things that we talked about taking shape before my eyes.  Sometimes it wasn’t quite that fast.

However,  my team was in India, and their day was my night.

So sometimes they would work on the site while I was sleeping.

And so I would wake up and start my day and when I looked at the computer,  there would be an email to open.

And the email would show me suggestions that my team had for how to make the ideas we talked about the night before take shape.

Some days it seemed instantaneously.

Some days it might take longer.   Often I was just getting used to an idea when it was already mocked up.

Just to say something I have learned about myself and my decisions is that I definitely have delayed processing post-injury and so it often takes me awhile to get used to an idea.   I may have had slower decision-making prior to my injury, its hard to know.   What I do know is that my decision-making is slower post-injury and so getting used to that and working around that is part of my “new normal”.

Back to my website and my team.  From my point of view, my new website began to take shape very quickly.

To me part of the empowerment that I felt from participating in the Knowbility Open Air Contest, was that watching my team gave me hope that one day I will use the computer much more easily and much faster like I could see that they do!

I was an early adopter of computer technology before my injury and I know the benefits that the appropriate use of technology could give me to enhancing my productivity and quality of life.

However, with my slowed learning following my injury and the difficulties I have had with the distractions of the computer as well as the trade-off I face in terms of energy loss from concentrating in front of a screen, and countless other issues that I don’t have a grasp on yet,  I have had a difficult time with experiencing gains from the computer.

Watching what my team could do not only motivated me and gave me hope just by seeing what they could do.

They also broke down for me new learning.  I would get an email saying these are the steps you need to talk to do this.   In others words, they gave me procedural information that I could follow.

First you do this, then you do that.

And I can follow simple instructions that tell me what to do and when.

Often I cannot break things down for myself.

But if the instructions are good and precise (and do not skip any steps), then I can follow them.

And if I cannot follow them the first time, I can try again and again until I learn them.

And I feel so empowered when I am successful at doing step one and then step two and then step three.

When I have hope because I can see where others are able to do and when I have a complete step by step approach, I can use the computer (or mobile phone or ipad).  And I can experience benefits of technology.  And I feel empowered.

When technology disempowers me, it disempowers me much more than it disempowers someone without my cognitive issues.

When I cannot learn how to do something new on the computer, either because their are implied steps or there is an assumption of knowledge that I do not have, or because I am unable to break down the steps myself, I experience frustration, just like others.

What may not be like others however is that I am conscious that I am dealing with a lot of increased frustration in just going about the simple tasks of my day.   And in order to get through the day, I am already pursuing strategies to keep my daily frustrations from getting me down or getting me depressed.

So going on the computer to help me, and ending up with increased frustration, is often a risk that I cannot afford to take in my day, if I am already having a tougher time in my day than I am used to.

Or if my brain is not having a good day.   In other words, if my brain is having a harder time performing simple tasks that I normally can do.

What my team did for me was by help me by pass much of the increased frustration that working on the computer can do for me.

They were motivated to help me, and they wanted me to succeed.

They broke it down for me.

Step one is this.

Step two is that.

And they modeled for me where I want to be one day.

And when I couldn’t do a task they suggested, they broke it down differently for me.

Together we found a way for me to increase my appropriate usage of the computer.

Everyone needs models outside of themselves to inspire them and help them with the steps they need to go where they would like to go.

I needed them before my injury!

After my injury, I need them more.

Thank you Team Axis and Joseph O’Connor and to all those at Knowbility.

Thank  you, thank you!

 

Read More - Empowerment from Role Models

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.

Read More - 2015

Joyous man with arms raised sitting in wheelchair held aloft by people in very large concert audience

Accessibility is So Empowering

Last week, I attended a Skype meeting of my team for the Knowbility competition.   I spoke with members of my team (team Axis) and my adviser Joseph O’Connor about where we were in terms of development of my website, what had been done recently and did it work for me, and questions that I needed to bring up with the judges at the Pit Rally at Knowbility the next evening.

I found the meeting very empowering and supportive.   I learned from all of the members of my team about the kinds of things they were thinking as they were developing the website.  I learned about how a screen reader (accessibility tool for a person who is blind or cannot read the screen without assistance from a machine) would read the site and what coding needed to happen for a screen reader to read my request for left sided navigation.  I learned about font size and color contrast and the concerns that needed to be addressed there.  And I learned about how they saw my site which helped me understand more about my own thinking about my site and what’s not articulated in the text or architecture.  And I learned that I needed to know a lot more about what scientists knew about neuroplasticity before I could articulate it, and that even though I know what it is through my experience of it in my getting better since my injury that I don’t yet know how to talk about it very well, even though the increases in my neural pathways must underlie the increased functioning that allows me to be talking through skype with my team and addressing my teams questions and following my team and adviser to the extent that I am following them.   (And following them as much as I did made me appreciate how much I wasn’t understanding what they were talking about nearly as well in the last two calls!)

All kinds of information came together for me and I understood so much more about the concerns that they were already addressing to make my website more accessible.  I also had new learning about the state of the research (or lack of research) on design elements to address cognitive accessibility issues on websites.   And I began to understand just how much thought and effort my team and adviser had been doing already and were continuing to do to make my website as accessible as possible to people with cognitive disabilities.  I felt so supported and I felt so blown away by the work that had been done and I learned from everyone.  I felt like my head was about to explode (in a good way) with new ideas and connections.   I literally felt that I could feel my neural pathways strengthening and branching out and connecting and growing.   I do not know how correlated my experience of what my head felt like with what was actually happening to my neural pathways.  Hopefully someone more knowledgeable than I can tell me about that correlation that happens between brain change and learning and whether some aware people can indeed feel it or not.

Maybe I am just willing my brain to grow and the visualization that I am doing by willing and imagining it, promotes the growth.

Or perhaps since I know that my neural pathways have grown and developed in the past, I know to believe in brain growth.  Perhaps it will happen because it has happened before.  Perhaps, there is not a correlation to what I am feeling in my brain and my pathways growing.   This would be an interesting question to know the answer to!

I would like to say more about all the concrete reasons that I felt empowered, during that call.

But that will have to wait today because I need to limit my time on the computer and I have other things that have to get done today.

I do remember having an experience before my brain injury where I thought I could literally feel the pathways of my brain growing after new learning, when they finally started to develop (which seemed to take longer than I expected they should take).

So I will share my memory of that experience with you to see if you can recall a similar time when you knew you were learning something new in a way you hadn’t know it before.

I took calculus (or was it linear algebra?) in the summer time at the University of Texas to prepare for graduate school in economics.

Since it was summertime, the course moved quickly and we had three tests in a short period of time, maybe six weeks, maybe eight.

I found nothing intuitive about the math I was trying to learn.   In addition, the graduate student leading my section was very bright but his explanations of the work were not helpful to my own learning.  So I had to study really long hours and really intensively.

I remember feeling after the taking the second exam, that I finally was understanding the concepts that I had been tested on in the first exam.

And I felt that I could feel the pathways grow from the new learning (although I would have said it was just my brain growing at that time).   I could look back at the first test and understand all these problems that I had answered more by rote than anything else.   And now I could connect them and understand them!  Suddenly, I knew the material and could begin to apply it!

That is a description of what the experience felt like before my brain injury, and its how I felt after my meeting last week with my team and adviser.  Except last week the experience was even bigger.   During our call, I began to understand what my team was thinking about it a much more expanded way and how supportive it was of my own mission with my website.

How did I feel after our team meeting?

Here’s the visual that I want to leave you with.

When I watched the live streaming of the annual Accessibility, this Fall, I was impressed by a picture that one of the presenters showed about what accessibility is.

It was a picture of a woman in a chair (wheelchair) being held up off high off the ground and supported by a group of people (who did not need to use a chair to help them stand).   It was a very empowering photo of possibility when everyone works together to support someone who is differently abled.  (Please see bottom note now that picture has been added to this post.)

I looked at that picture and thought, I want to feel that kind of support around the computer and my cognitive deficits that limit my abilities.

After working with my team last Wednesday, I felt (and feel) what I imagine the woman in the chair felt.

During our team call, I felt lifted up.

During our team call, I felt supported (even more than I had already felt).

And honestly, I felt that together, the sky is the limit!

Accessibility is so, so, empowering.

—–

Bottom Note:

I came across my notes from the Accessibility Conference and found that Elle Waters had shown this picture and that it came from the Huffington Post originally.   Elle Waters sent it to me so that I could use it on my blog.

Two things I want to share that I realized when I re-read my notes and saw the picture.   I had remembered the person being lifted up as a woman, like me.   Looking at the picture, I believe he is a male.  I liked that in my memory, the person could be anyone or any gender.

And, I wrote down in my notes something important that Elle Waters had said when she showed the picture and is worth repeating.   I will paraphrase her from my notes here.   She said that true accessibility is about the crowd experience of lifting someone else up.   Its not about the isolation and frustration that the person without accessibility experiences–frustration or difficulty with new learning, or lack of access.   Its about everyone feeling lifted up by the access.

And that is what I feel and I believe that the rest of my team has felt as we have improved my website and learned and made the site more accessible.  We have all felt lifted up.

And we have all lifted each other up.

Read More - Accessibility is So Empowering

New Learning and Website Design

I have written about the contest (the Open Air Rally) that I am participating in through Knowbility to make my website accessible.

We are in the final two weeks of the competition.  Its very exciting.

I had a great meeting with my talented and knowledgeable development team Team AxIS from Cognitive Interactive with my team leader Antonia and the lead developer Krishna and with my esteemed team adviser Joseph O’Connor on Wednesday night last week.
(more…)

Read More - New Learning and Website Design