4th Federal Interagency Conference on #TBI #Concussion is next week!

 

Excitement is Growing about the Federal Interagency Conference next week in DC.  And its growing on Twitter!

I am going and presenting.  I am so looking forward to seeing other presentations and meeting old friends and colleagues (professionals and survivors and those who love them).

Its been my Twitter feed that has really engaged me about the conference these past couple of weeks.

Why Twitter helps me

From my Austin Tech Accessibility Community, I have learned to use Twitter to reach my audience.

My Twitter handle is @aplasticbrain.

I will be tweeting at the Conference as will many others.

Please connect with me!

I love Twitter because I can connect easily with others interested in recovery after concussion, traumatic brain injury, acquired brain injury, stroke, professionals, clinicians, state and national brain injury organizations and friends and families.   I get inspired by others tweets.   I can connect people easily through their handle.

Using Twitter also doesn’t fatigue me, overwhelm me or disorient me like some of the other social media.

According to one of my many tech mentors here in Austin, Sharron Rush, at @Knowbility, Twitter is accessible on the backend to people using screen readers and other assistive technology.  Using twitter is an opportunity for me to use most accessible social media to TRY to reach others like me who have difficulties using technology after the injury.

Sharron’s insight into what Social Media was best for me with a cognitive disability has literally changed my life.

It opened up a new world for me.

With my own cognitive disability, however, I have to admit I have learned I am a very slow learner on some accessible technology features of Twitter.  But that’s another whole blog post.

The other thing about Twitter that I like is that it forces me (in a good way) to learn how to say something quickly, focus on the topic sentence, think about what’s most important to my audience and overall learn more brevity every time I use it.

Since I originally lost the ability to find the topic sentence in a paragraph after my injury, and have regained that ability slowly but surely with both rehab and practice, practice and practice, using twitter has been a good way to continually practice skills I learned in rehabilitation when I eventually got it for my concussion.

 

A Brief Introduction to the Federal Interagency Conference

 

I know how much I have gotten out of my experiences at the last two Federal Interagency Conferences.   As Doug Katz, MD and Former President of the American Congress of Rehabilitation Medicine says, the Conference is one of the best Brain injury Conferences in the World.

 

That’s a lot coming from someone of his stature who attends the caliber of conferences he attends worldwide as well as his involvement in Rehabilitation Medicine research, publications, clinical practice and his support for people with brain injury.  Twitter : @dokatz

 

The Conference brings together professionals, clinicians, researchers, brain injury organizations like the Brain Injury Association of America (BIAA), the U.S. Brain Injury Alliance (USBIA), Brain Trauma Foundation, other Foundations like the Ontario Neurotrauma Foundation (Canada), and OneMind and, of course, researchers, policymakers, grant administrators and others from all of the Federal Agencies to showcase their work.     I could go on and on about others who attend, but want to just give a flavor.   (I had my wonderful person who’s been helping me with tech put the link in for me at the end of the blog, since I am still learning how to do links in WordPress.

 

 

The Conference happens every 5-6 years, so it brings together work that has been done or built on during that period.

 

I have been lucky enough to attend the 2nd and the 3rd.   By the time I attended the 2nd one, I knew many of the presenters because of my volunteer work at BIAA, attending Brain Injury Awareness Day on Capitol Hill (with BIAA), my own speaking, my work with WETA Brainline through another amazing advocate and mentor, Theresa Rankin (@ruralmilitary), and because I knew of the incredibly helpful work that members of the American Congress of Rehabilitation Medicine (ACRM) did (thanks to BIAA, WETA, Theresa (@ruralmilitary), Dr Bigler, Drs Robin Green (Toronto Rehab, Toronto, Canada) and Margaret Weiser (Parkwood Hospital, Ontario, Canada @DrMWeiser), the Ontario Neurotrauma Foundation and many, many others.

 

I have a lot more to say about what I got out of the previous Federal Interagency Conferences.

 

But for now, let’s just say that I got so much out of the 2nd one, that I made an effort to attend the 3rd one right before we moved from DC to come to Austin in 2011.

 

I literally stopped packing for 2-3 days because it was so important to me to attend the Conference before I left DC.

 

At the 3rd Interagency Conference, I still remember Patricia Dorn, PhD stopping me to tell me how important knowing my story was to help her in her research.   It meant so much.

I have tried to reconnect with Dr Dorn when I first found her card, after our move back to Austin turned my world upside down.

I was unsuccessful as her email bounced back.

I really appreciated her telling me the value of my lived experience and my advocacy to her research.  It’s always good to hear that my hard work and hard fought learned lessons makes a differences in other lives.  It was also such a meaningful comment since I did research pre-injury and now was anecdotal evidence to frame and inform research.  And its comments like these that keep me going when the going gets tough!

Come to find out in preparing for the upcoming Conference, that Dr Dorn is now in a more important role at the Veterans Administration.   In preparing for the Conference, I found her card and suddenly this memory of the 2nd Interagency Conference when she first pulled me aside appeared plain as day.

And then, once that memory was reconnected in my brain,  I was able to connect more dots to the present.   Yahoo!

She had been at my table at the ACRM Annual Conference in Atlanta and when we spoke she told me she knew who I was.

I am so glad to consolidate that memory now.  Once the right cue helps locate it, the wires connect and fond memories connect too of all those professionals and colleagues and friends and sometimes, family, who, like her, are supportive of the new learnings that come from lived experience    Yahoo!

Excitement is Growing

Last week, several people who attended Brain Injury Awareness Day were tweeting and retweeting about the Conference.   It got me really really excited about the my world opening up further at the Conference.

Others from BIAAs Advisory Council that I work on were tweeting:

@momof3missess (Kelly Lang), @amyzellmer (Amy Zellmer), @Cavinb and @pboswo1

 

And folks from awareness day who I met for the first time in person and who’s handle I think I have committed to memory or I can easily find:

@alcolvin (military) @pinkconcussions (Katherine Snedaker) and @seeclearlyLTSC

 

And I just found BIAAs Advisory Council Member, Catherine Brubaker’s handle @CLB1AZ and need to get her handle in to front of mind (a memory issue I am trying to overcome)

I am looking forward to meeting Catherine B. for first time!

 

Twitter for the Conference this week

 

Here are some other Twitter Handles of organizers, sponsors and attendees of the Conference that you might want to follow on Twitter about the Conference:

 

@TBIConferenceIA   (for the TBI Conference)

@ACRMretweets (for American Congress of Rehab Medicine)

@biaamerica (for Brain Injury Association of America)

@OntNeurotrauma (Ontario Neurotrauma Foundation, Onatario Canada)

 

Here are links to the Conference, links to Kelly Lang’s talk, Amy Zellmers talk and my talk on Behalf of our Advisory Council at BIAA.

Link to the conference page

Link to Kelly Lang’s talk

Link to Amy Zellmer’s talk

Link to Anne Forrest PhD Talk

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Virtual Panel How Persons with Brain Injuries Use the Web

On December 1st, 2017, I participated in a virtual panel on how people with brain injuries utilize the web.

I am honored to be part of a panel of world wide experts.

These are the three things I found most interesting about this experience.

  1.  David Fazio and I are both leaders who have had a traumatic brain injury (TBI). David is CEO of Helix Opportunity, Inc. and incredibly successful, even after having endured a TBI as a teen. He figured out how to work around his deficits. He’s got a lot to teach me!
  2. Neither David nor I identify as having a disability, even though we both are indeed disabled.
  3. Other experts on the panel, a person with autism, persons with blindness, and persons with other conditions, articulated many commonalities with David and me, even though we had very different disabilities.

Many thanks to Deque and particularly Laura Goslin who moderated the panel.

Here is Laura’s summary and a link to the virtual panel. Enjoy!

Virtual Panel How Persons with Brain Injury Use the Web

Virtual Panel: How Persons with Disabilities Use the Web

To commemorate International Persons with Disabilities Day, our panelists discussed how they use the web as a person with a disability.

Summary

This webinar was intended to create awareness around web accessibility, or how persons with disabilities use the web. This webinar is a great introduction for people who are new to accessibility but want to learn more. Our panelists went over the various scenarios they encounter while using the internet. Millions of people have disabilities that affect their use of the web. Currently, most websites and software have accessibility barriers that make it difficult or impossible for many people with disabilities to use the web.

The theme for this year’s International Persons With Disabilities Day (IDPD) was “Transformation towards sustainable and resilient society for all.” In the era of digitalization, technology provides a means to such innovation. It is essential that the Web be accessible in order to provide equal access and equal opportunity to people with disabilities. Too often, adaptation and dissemination to technological innovations widen the gap towards equal access for persons with disabilities.

Panelists:

  • Anne Forrest, Ph.D., has been recognized as one of the nation’s leading patient advocates for people with traumatic brain injury. She lives with persistent symptoms from a mild TBI that she received during a June 1997 car accident and continues to recover.
  • David Fazio is the founder and president of Helix Opportunity, a business and organizational development consulting firm that facilitates inclusion the $8 trillion consumers with disabilities demographic in commerce. David survived a softball sized hemorrhagic stroke, from a brain aneurysm on August 2, 1996. He has been active in many disability organizations and initiatives ever since.
  • Jamie Knight is a Senior Accessibility Specialist at BBC. Jamie enjoys mountain biking and is never seen far from his plush sidekick, Lion. Jamie’s areas of expertise include accessibility, JavaScript, HTML, CSS and Autism.
  • Tim Harshbarger is an Accessibility Consultant at State Farm Insurance Companies. Tim has been visually impaired since a young age, he is very passionate about accessibility and believes it should be a part of the web development process.
  • Jeanine Lineback is a Senior Accessibility Consultant at Deque. The crossroad between people and technology is Jeanine’s passion, she is highly involved in the community and is visually impaired.
  • Sandeep Tirumangalam is an Accessibility Consultant at Deque. Sandeep has been working in the field of accessibility since 2013 and is a person with low vision.
  • Birkir Gunnarsson is a senior UX and Digital Accessibility Expert at BB&T. Birkir was born and raised in Iceland, attended Yale University, and has been blind since the age of 5.

Virtual Panel How Persons with Brain Injury Use the Web

 

 

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Knowbility I Am Accessible

Being Part of the Solution with Technology and Knowbility

I first heard about the great work that Knowbility does through Dr. John Slatin, Sharron’s former co-author on a textbook on better cognitive design.    John was the Director of the University of Texas Institute of Technology of Learning.

I am a PhD economist and was working for a think tank in DC on economy/ environment issues.  In June 1997, I had a concussion/traumatic brain injury in a car accident. I sought medical care and as I tried to return to work, I wasn’t successful because I couldn’t read, the computer affected my sleep/wake issues, and I couldn’t manage my daily life. I was treated for headaches (but no cognitive therapy) and was told I had a limited window of recovery.

On the advice of a doctor, I turned off electronics and did my best to find my way to rehabilitation which was a slow process.  Most of my doctors were telling me I would have limited time for my brain to get better.

Fast forward 3 1/2 years, I was able to get cognitive rehabilitation at St. David’s Rehabilitation Hospital after I moved back to Austin.

St. David’s Cognitive therapist, Liz Joiner, turned my life around and gave me the building blocks to manage my life.  She got me back on the computer with compensatory strategies, and together we looked for a volunteer rehab job in technology, and for someone who could help me find solutions to the sleep/wake issues that I had after the concussion.

That’s where John Slatin came in.

John provided tech and design solutions such a:

-moving me to an LED screen from my CRT screen,

-trying to see if a screen designed to be accessible for people with low-vision would help me (I ran screaming from it!),

-trying to see if learning Jaws (technology designed to help people who are visually impaired) would help me, and

-getting me interested in helping finding a way to solve the cognitive frontier so that people like me could use the computer more readily and more easily.

John soon launched my public speaking career by giving me a spot to teach about cognitive disabilities in his class on Accessibility and the Internet.  When we moved back to the Washington DC area, he flew me back to teach to his class for several years.

After we returned to Austin from DC in 2011, I reached out to Sharron Rush and told her the progress I had made in my recovery.  By that time, I was the first non-military, non-pro-athlete person with a concussion to speak on the Congressional Briefing Panel for Brain Injury Awareness day and had spoken internationally about recovery from concussion.  While I had had a lot of functional recovery (I could be a mom and I could drive), I still had issues with how the computer screen affected my sleep/wake cycle and knew it was a barrier to my increased productivity at home and on the small consulting jobs I was now able to do.

I started looking for ways to volunteer for Knowbility given that my husband and I were the parents of a toddler.  I still had some fatigue and cognitive impairments which made my day challenging and I wanted to keep a positive attitude amidst the frustration.  I wanted technology to empower me rather than set me back, so it was a tough balance.  Sharron encouraged me to enter the OpenAir competition.

At that time, my husband had created a website for me, www.aplasticbrain.com.   Each week, I tried to write about my recovery to give hope and inspiration to those who were trying to recover from a concussion.  I wanted to make my website accessible for people who had eye-brain processing issues after concussion, and for other people with brain injury.  Most websites were inaccessible to me, including those imparting information about concussion, because they were too busy, formatted poorly, and I would get lost trying to navigate them.

I entered my website into OpenAIR in 2013 and worked with an amazing development team.  Joseph O’Connor was assigned as mentor and he was interested in cognitive disabilities.  Joseph and the design team who I worked with ( a team from Cognizant in India) would translate my ideas overnight since they worked while I slept.

I am so proud to tell others about the hard work we did to create a site that is easy to navigate, simple, and has a color scheme that is soothing.  Several years later, I’m still learning how to write more accessible paragraphs and post pictures and describe them for someone who isn’t sighted. But that’s one of the wonderful things about volunteering with Knowbility: I have learned so much in regards to how others with (and without) diagnosed disabilities experience the world.

Last season I volunteered to share lessons learned at OpenAir and to mentor another non-profit team. I always attend the kick-off ceremony and the finale when I can, because it’s so exciting to watch how each year the contest grows, becomes more international and inspires designers and non-profits alike.  Last year, the increased enthusiasm among participants at the kick-off was palpable.

Each year, I speak about my cognitive impairments and technology at John Slatin/AccessU.  It’s an opportunity to give back.  Since I don’t look like I have cognitive impairments, it’s been a blessing to learn increased awareness about myself and learn increased strategies to empower me further.  This year I want to teach about cognitive reserve and brain processing, so I’m already looking ahead to work with Knowbility on that for May 2017.

It feels good to be part of an organization that has solutions.  We now know that 90 % of people who don’t get better from concussion have neuro-optometric/vestibular issues like mine.   Solving the issues of cognitive design for people with concussion is paramount to helping them return to health and back to work.

Thanks to Knowbility, I’ve been part of the solution through modeling and teaching about what’s worked for me.  I can spread the word and I am able to help others get the help they need.

 

My thanks to Marine Menier and Jessica Looney for editing this blog post!

 

 

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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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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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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!

 

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