My proposal for a panel at SXSW Festival

While I have been trying to get cognitive rest and rest and trying to get better from my setback, my dear husband, Michael, has put together a proposal for a panel at SXSW festival.  (If you are not familiar with SXSW, its a local festival here in Austin and I have more info about it below.)

This week, I have been helping send that out to get votes for my submission.  Its been an interesting week of trying to minimize my computer use to help me get better and at the same time connect with others through my husband’s online mailings.  I have managed it pretty well by only being on the computer for 20 minutes at a time and then coming back to it again later after cognitive rest and doing that off and on during the day.

I have found that the small iphone screen is actually easier for me to get feedback than my wide screen monitor right now, so I have taken advantage of that learning too.

Here’s my request for help to be selected for SXSW Festival and info on my topic.

The voting stops on Sept 5, but anyone can access the first link to see what I am proposing and background info.  I think my husband did a great job with this!

Please vote (voting instructions detailed below)  if you like it by Sept 5.

Otherwise, check out the panel description (by clicking the link posted below) and give me feedback about my panel on my blog!

I will post it on the blog if I am selected to do the panel.

Help Me Get Selected For SXSW Festival!


I need your vote!

I have submitted a panel for SXSW Festival about concussion and the brain.

Your vote for my panel will help me get selected to present at the Festival.

It’s a very competitive process. There are 3000 panels submitted this year and only “a small percentage” are accepted.

Please take 5 minute to register and vote to help me.

Thank you!

Here are the details:
Some of you are familiar with the SXSW Interactive Festival already.

SXSW stands for South by SouthWest and the Interactive part is the fastest growing part of the festival. Interactive is the technology part (interactive=different kinds of media).

SXSW is an international festival and a global audience comes to Austin in March to hear speakers and see demonstrations.

Festival participants are interested in all kinds of subjects and how they can be improved through technological tools.

SXSW is a pretty amazing concept and the Interactive part has gotten a lot of media attention in the past years.

I have proposed a panel called:
Welcome to Your New Brain: Lessons from Concussion.

At this panel, I will talk about the learning I have had to understand how my brain functions, how my brain changes over time (neuroplasticity) and how to overcome cognitive deficits and diversity.

The lessons I learned and tools I use are useful even for those without an injury. In fact, I wish I had had them before my injury.

Here’s the link for the full text of my panel including supporting info like my cameo on NBC News and The Washingtonian article:

Voting Instructions
So here is how you vote for me:

1. You register to vote here:
Once you have done this first step, you have done the hardest part

2. Then you vote (vote = thumbs up)

Thank you for your help! I will let you know how this turns out for me.


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Better but not completely back and Happy 4th

I am 70% better, but not all the way back to my baseline.

I had good news from talking to my Doctors.

My Neurologist says that if I have gotten 70% back, then the 30% will come.

He told me I am doing all the right things–cognitive rest and physical rest.

He was pleased that I had reached out to my support team and that what I am doing it working.

He did objective test to show me that although I have increased memory and cognitive problems, I can pass his simple cognitive tests.   They are still there!   When he was asking me questions, I remembered all the hard work I had done in rehab to get these back.   And I was thrilled they were still there.

More later.

Happy 4th.

I will continue to rest and get cognitive rest until the other 30% gets back.


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Listening to my body

Perhaps one of the biggest gifts of recovery from brain injury is learning how to listen to the very subtle clues of my body and changing my actions in response to that information.

This week, the clues from my body were not subtle at all.    I have had a lot on my plate for awhile this spring.   At the same time, I have felt that I did not need to observe the same limitations that I have learned to observe in the past.

Its a tricky balance to figure out — how much to take on and how much to observe what I have already learned about my limitations.    Since I want to allow for improvements in my ability to function, I want to be flexible when I feel that I can take on more.    At the same time, I have to feel my way into how much my restrictions/limitations are changing  or how restrictive my new limitations are.   This is a trial and error process.

Earlier in my recovery, I call the trial by error process “error by trial”.    With a brain injury–with parts of ones brain not working well–its hard to learn to stop doing things that are making you feel worse, especially when I could do so much more before my injury that I had no sense for–and no experience about– the limitations that my brain injury imposed on me.

Earlier in my recovery, I needed a doctor or health professional who was knowledgeable about brain injury to help me with the trial and error process and to teach me awareness.    Because I did not get to appropriate health care early on in my injury, this meant I had to learn alot about my limitations on my own (which was very frustrating and marginally successful to say the least!).    I am especially grateful that my eye doctor, Dr Francke, helped me learn some of the basics on this by observing me twice a week at my eye class and by reviewing my activities with me on a weekly basis.

And the devil is in the details!   Figuring out the balance of how much rest and how much exercise for optimal recovery and when to increase rest and when to increase exercise is not easy.   For me, the help of a health professional was tremendous.   While my eye doctors have been very helpful for me with this, so too have been the speech and language therapists, occupational therapists and physical therapists who eventually helped me with this as I was successful in getting more and more treatment.  Because they were observing me with regularity they could make seemingly suggestions or tweaks.  What I experienced  was that often small suggestions had large consequences towards improving my functioning.

As for this week, I had to stop everything that absolutely did not have to be done this week, until I felt better.   That meant resting horizontally as much as I could while my son was at school and getting increased sitters for the week.

It meant using all my compensatory strategies like:

–putting things that didn’t have to be done off,

–getting take out,

–limiting my driving,

–eating as healthy as I can;

–sitting down everywhere I went;

–getting a little exercise but not as much as I normally do;

–doing things that were inspiring or fun — like noticing the beauty of spring — that gave me some energy;

–and generally conserving my energy as much as possible.

I feel much better, but am still taking it easy to try to get back to my “normal”.

I didn’t think I was going to be able to write the blog this week.    I feel well enough to spend a little time on it but will spend less on it and come back to it if I need to next week when I hope to have more energy.





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

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

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

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

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

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

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

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

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

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

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

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





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