vision

New and Better Website Coming!

aforrest Leave a comment

Friday I got signed up for the Open Air Rally at Knowbility an organization here in Austin that promotes accessible design.

In the next couple of months, I will work with a group of experts on accessibility issues including web designers, programmers and marketers to improve my website.   I will be matched with a team of experts who will volunteer their time to help me develop my message and improve the accessibility of my website so that people with all kinds of disabilities as well as people with out disabilities can read it better.

At the end of the process, there will be a competition to see who’s website is the best with respect to a set list of accessibility criteria.

I am really excited for 3 reasons:

1) I know that I wouldn’t have been able to read my current website until years after my injury.  I have visual and cognitive and processing deficits.   I want others with my issues, and with other issues, to be able to read my website, if they want to.

2) One of the people who founded the Open Air Rally with Sharron Rush at Knowbility was Dr John Slatin.  Dr Slatin led what was then-called The Office of Technology and Learning at the University of Texas.   Dr Slatin found a place in his office for me after I finished speech and language therapy rehabilitation at St David’s Hospital.   He was a tremendous mentor of mine.  He provided the vision and direction for my post-injury speaking engagements.  He helped me understand the need for more and better information on cognitive deficits from his point of view as someone interested in accessibility, learning and technology.

My first post-injury speech was to John’s undergraduate class on improving the accessibility of the web.    I spoke about my cognitive deficits at that time, and the difficulties I had with using the computer and what had helped.  That speech was the first of many on what my cognitive issues were, how they were changing and how the computer could help me.   After the speech, John told me that he could see my economics training in my descriptions of my brain.   It made me so happy to know that my economics was still in my brain somewhere and that I could continue to develop that skill now that I knew it was there!  I wanted so desperately to be reconnected with my training in economics which I loved.

When I knew John, he had had to learn to compensate for adult-onset blindness and he worked hard to increase accessibility for UT students.   Sadly John passed away from Leukemia after we left Austin for Washington, DC.

For me, connecting with Knowbility and entering the Open Air Rally are steps in honoring how important John’s mentoring has been in my life.   I know it would mean alot to John, if he were still alive and could see how things he began years ago are helping me now, and how the work will help others with cognitive and visual disabilities.

3) The mission for my blog has evolved and changed since I started writing it over a year ago.    My original idea was to develop a community, but its primary focus has evolved to be mostly the blog.   Because the mission has changed, the current website is not the best for my mission.  In technical terms, the User Experience (UX) design is bad for everyone. Bad UX design is frustrating and bad for people without disabilities, and can be exponentially more frustrating for people with disabilities.   I am glad we can finally take steps to ameliorate the frustration that my current website currently creates.   We had to start somewhere, and I am ready to take the next step, with such dedicated help.

And lastly, I am hoping I will learn a lot compensatory strategies for my computer use in the process of working on improving my website with people who are knowledgeable about accessibility issues.

Here’s the link about the Open Air Competition through Knowbility:

http://www.knowbility.org/v/open-air/

 

 

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More on Neuroplasticity

aforrest Leave a comment

In last week’s post, I talked about how experiencing and believing in neuroplasticity gives me hope and helps me be optimistic about my continued recovery.

But neuroplasticity gives me so much more than that.

So I want to say more about what the changes that I am still experiencing are like.

I have had several exciting conversations about the neuroplasticity that I am experiencing this week.

One with Maria Romanas, an MD, who was interested in the neuroplasticity I am experiencing and how my vision therapy promotes that.

And another conversation that I had was with a friend from Thatcher Freund, a memoir writer.  I have known Thatcher from Junior High on as he is the brother of one of my best friend’s and the three of us did a lot together–in fact people used to ask if we were triplets.  Thatcher has been researching vision and neuroplasticity and what is known and utilized  in the dyslexia community.

I have been telling people that ask me how I am doing after my setback that I am in the midst of experiencing intense neuroplasticity and this week I feel full of energy and “clear as a bell”.

When I told Thatcher that I was experiencing neuroplasticity and felt clear as a bell, he almost jumped out of his chair and said “I am so excited you said that.”   He said, he could “see” how much clearer and more articulate that you are compared to the last time we had lunch (in December).

So we had a very animated conversation about what was going on for me.  Because of his research and interests and background as a memoir writer, he asked very probing good questions that I had a difficult time answering.   Its hard for me to get to concreteness on describing how my brain is changing sometimes and what I am feeling and how the neuroplasticity is changing my thinking right now.

But one thing I have learned in my journey to recovery is that if you give my brain good questions, it will eventually come up with answers.

My brain cannot come up with answers, quickly, so I don’t expect it to.

But I know that my brain will come up with them if I am patient and let it come up with them on it’s own time.

So my brain will give me the answers later.

Answers may come up when someone says something to me that “cues” me.  (And with a brain injury I have certainly learned how to look to others for “cues” to help me think or to help me stay on task.  So I know how to cultivate stimuli received from others to help me think.  I have been practicing doing this for a long time.  More on this later.)

And I know that answers may come when I meditate, so I cultivate a meditation practice.  And I know that answers may come up randomly during my day.   So I know to look for them to cultivate and harvest.  And I know to just let one of these processes happen and to be patient with my brain.   And they may come up as I write my blog.

A couple of things to say that I have harvested since these conversations about the neuroplasticity that I am experiencing:

1) The gains that I am having right now are specific to the deficits that my brain has been having.

I realized that its probably that since ” if you have seen one brain injury, you have seen one brain injury”, my gains are about me and are not necessarily true for others.  In other words, every brain injury is different.  In my mind, it follows that the experience of neuroplasticity will be different for everyone, which is why its important to hear how others experience neuroplasticity also.

2) That my gains from neuroplasticity are specific to the deficits I am experiencing right now.

Earlier, when I was getting treatment for attention and concentration issues, I was experiencing neuroplasticity around attention and concentration and by conquering those problems, I was able eventually to have more abstract thinking because my brain had changed to support more abstract thinking.

When I realized that my current neuroplasticity is specific to my current deficits, I figured out more about how to describe it more concretely.

This summer, I was sleep deprived and was getting head aches from muscle tension and thus I was at a lower level of functioning.

Now that I have resolved those issues from my setback, I am experiencing repair (neuroplasticity) around my “executive functioning” (which I was having before the setback).   Or at least I think its my executive functioning.   Someone described executive functioning as the “executive” in ones brain making decisions about priorities and what to filter out and what to filter in and how to do decide to do things in order and figuring out the steps to line things up.  A researcher at the Smithsonian in DC called it the ability to “get the trains to the right stations on time”.

So one way I am experiencing neuroplasticity right now is about categories and my ability to categorize.

Over the course of my brain injury, I have had a difficult time sorting things into categories.    An overly exaggerated example might be, if I were to sort out red and blue sock, post-injury I would inevitably sort some red socks into the blue and some blue in the red.  This happens because I wouldn’t notice that some red are in the blue and vice versa.  I just couldn’t see what keeps the category pure or in tact.  And it also happens because I may forget my sorting rule in the midst of the task (and not be aware that I have forgotten it).

I would compensate for this issue, by taking a second pass at sorting the red and blue socks, and I would notice some of the red in the blue and the blue in the red.  But I would not notice all of them, because of the same problems above.

So suddenly, I experience neuroplasticity around my sorting, and I can look at the red and blue sock piles, and suddenly see that oh!  there are still more blue socks in the red sock pile and still more red socks in the blue sock pile and I can “see” the things I couldn’t sort before and consequently make the piles more pure.  So suddenly I want to reorganize so that all the reds are together and all the blues are together.

The reason I used the example of red and blue socks is because its exaggerated.  You can imagine how unorganized my house looks after moving, if I cannot organize something like blue versus red.  In reality, its a little more subtle than that– its beige versus white or kids bowls mixed in with kids plates or its papers that belong in one category versus another.  So its not just my house, its my writing and its my organization of my day and its organization of my projects and on and on.

And the irony of it is, is the less distraction I have, the more I can focus and be efficient and think better and more efficiently. But my injury means that I have a lot of distraction going on in my brain that I don’t yet have the skills to filter or the procedures to filter out.

And when I experience neuroplasticity, I suddenly can see how to filter things into better categories.  Since I have better categories, I can do things more efficiently and because my brain can do things more efficiently I both have more energy to use toward problem solving and I can solve more problems (because my brain has more energy to solve problems.)   Both the energy and the increased abilities bring a sense of accomplishment and a kind euphoria.

(And, not to mention, I don’t have to spend time employing the compensation strategy of going back and doing the work again,  I am more likely to get the categories right the first time, and thus save time doing the task.  That is if I am aware enough that I can drop the compensatory strategy. More on this later too.)

And another more on this, later catagory too.   I need to add briefly that the neuroplasticity isn’t all good.  It comes with “costs” that I have to be willing to tolerate in order to embrace my brain’s ability to change  and get the benefits of the neuroplasticity .

There is a down side of the sense of accomplishment and euphoria of the neuroplasticity.   It can be depressing to grasp just how poorly my brain was functioning before.  So I have to be able to take that in without judgement.  And I have to be able to let myself cry and grieve and feel the losses that I now suddenly am aware of that I wasn’t aware of before the neuroplasticity stage kicked in.   Sometimes its too much to take in, so I have to take it in slowly.  Sometimes when I experience the neuroplasticity and the new “seeing” it makes me feel vulnerable and unsafe because I am suddenly aware of how others could take advantage of my deficits or in some cases, how I actually was taken advantage of with my deficits.   Or it makes me realize places where I couldn’t stand up for myself as a result of the fact that I didn’t have the brain skills to do it, and I have to be easy on myself, and know that I did the best I could then, and that in the future, with increased skills I can do it better now.

Do you know when you are experiencing neuroplasticity?

Can you describe it?  Or begin to describe it?

Does it make you feel euphoric and optimistic?

Or do you feel scared or frustrated?

Do you feel losses with it?

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Cultivating Neuroplasticity

aforrest Leave a comment

I having been writing about the big setback that I have had following a dentist appointment to fit a new mouthguard and what its been like to go through this setback with the increased awareness and insights that I have developed from my previous recovery journey.

I am clearly in the final stage and I am experiencing the neuroplasticity that I hoped I would get coming out of this.  Goind through what I am going through is “not pretty”– in that my brain is making mistakes and going through some growth pains right now.   But its exciting.   I know beyond a doubt (from my previous experiences with neuroplasticity) that I am going to come out of this better than I was before June 2 when this setback started.

My uncertainty about the outcome of all this is gone!  Yahoo.   I still don’t know when this final stage will be done, but my job right now is to cultivate, entice, do everything I can to allow my brain to change in the ways that it wants to.  I want to get the most benefit I can from this neuroplasticity phase that is finally happening for me.

In other words I need to get out of the way of my brain’s ability to change for the better!

That may sound a little dispassionate.  Who ever heard of getting out of one’s brain’s way before (!)

I have learned from my years of recovery to separate myself from my brain and what my brain is doing.

Before my injury, my brain was who I was.  My brain could support me being a Phd Economist and that was my identity.  I was what I did.

After my injury, I did not have the skills to do my job anymore.  I didn’t know who I was because it felt like I was no longer me.

Having learned a lot of the tough lessons of recovery, I know that the more I see my brain as separate from me, the better I can be dispassionate about what my brain is doing, and the better I can not take what my brain is doing personally!

And not taking my brain personally, means that  in this case that I can step out of the way and let things happen for my brain, so that I will continue to experience long term recovery.

Here are three ways that I know that I am in a period of neuroplasticity, right now:

1) I can feel my brain reorganizing.  What that means is that I suddenly start seeing all of the disorganization that I could not see around me before.  For example, I will look at my clothes drawer, or any drawer, which has previously been as well organized as I could get it.  Suddenly, looking at the drawer I can see a better organization.  I can also see that my shirt drawer shouldn’t have pants in it, for example, or that like shirts can go together, so that I can find them easier.   Since this is happening all over my house, it feels good to start taking advantage of the better organization that my brain will allow.

2) I get a burst of energy.  I assume that this comes from the fact that I can see how to reorganize things that were previously poorly organized despite my best efforts.   It suddenly takes less energy to do a task because all the steps to do it are now obvious to me, suddenly.  Because I can do things more efficiently, the energy I have can go farther in my day.   The increased energy makes me want to take on more things that I am noticing should be organized differently.  (In fact, I have to work hard not to overdo it and get too exhausted from this surge of energy that I get.)

3) My vision is inconsistent, along with reorganization and the energy burst.  I can see well far away with my current level of correction for my contact lenses.  But my near vision isn’t good and  my vision is not very stable. It is changing.  But, that is okay.  I am learning how to integrate more space, and it is what it is.  I want to use the brain injury strategy of “riding this out”.  This means, tolerate it until its over.  (And I am limiting my driving in order to keep everyone safe. I am only driving when I need to and at low speeds to familiar places nearby that I cannot walk to.)

Dr Franke, OD, my vision doctor extraordinaire told me what to expect with a transition and it is indeed happening.

Have you experienced neuroplasticity?

What do you experience when you are experiencing neuroplasticity?

How do you know when its happening?

 

 

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The Road Ahead for the Blog–Part 1

aforrest Leave a comment

I wanted to take a moment to look forward about where I would like to go with my Blog.

This assessment includes looking backward about how far I have come with my Blog.

Self-assessment is one of the gifts from my rehab.   After my accident and before I got to rehab, I had an immense difficulty learning from my mistakes.  When you cannot learn from your mistakes, you make the same ones over and over.   Making the same mistakes over and over again is very frustrating, to say the least.

I am grateful to rehab for giving me back the tool of self-assessment and new learning.  Having lost these abilities and having re-gained them, I am very aware of their value in my day-to-day life.

When I started my blog, my goal was to write a blog post once a week.   I have accomplished that.

Wow!

Since September, I have written a post each week.   So that is roughly 8 months of practice doing a post once a week.

I must admit that doing that writing hasn’t been easy to add to my schedule.  But it has gotten easier with time, overall. On the rough weeks, I get my a post out by Sunday. On good weeks, I get it done earlier in the week.  But whether my blog post gets published on Tuesday or Sunday, I have been successful in getting one out every week.

Working something new in my schedule is always tough for me.  Its a piece of executive functioning that my brain is still working on.   And I have other things in my schedule that I need to stay on top of, like moving forward my son and family’s life and a lot of doctors appointments.  (I am still working on re-establishing my team of doctors here in Austin).   So managing all that takes a lot of work and compensatory strategies.  So that has been a tremendous challenge.   But I am managing it and it has gotten easier.

My process is usually to write a draft early in the week, give it a day or two, and then go back and edit it and finalize it.   That has been really helpful to let it percolate and go back to it.

Sometimes I realize that the topic I first wrote about isn’t what is compelling to me to write that week, so I start anew.

I had tried to post a picture on my blog.   I seemed to have dropped the picture around the holidays.   It was fun to do them and to think of the theme visually.   However, I haven’t learned how to post a picture, so I was dependent on someone else doing that piece for me.   Since it was hard enough coordinating my own schedule, I found needing to wait for someone else to help me with that piece was something I did not want to work on just yet.  It added to my frustration too much and I find I do better when I don’t do things that add to my frustration level.   I have enough frustration to manage with out adding more.

One thing that I have noticed is that I am not good at writing headlines.   I chuckled with I realized this.   I chuckled because as I reflected on whether this was a brain injury thing or not, I realized it may not have been a strength before my injury.   I recall my dissertation adviser, Kip Viscusi, telling me that I needed to learn how to write snappy headings for my dissertation.   While I remember when he said that to me, I don’t recall if I learned to write better headings after he made that suggestion.

And, one of the reasons I have difficulty with the title is that I typically sit to write one thought, and as I write I realize that that one thought is usually five thoughts.  Or that articulating the thought is much more complicated than I realized before I started writing.    So as I try to articulate the thought in a simple way, I sometimes forget to look as to whether the title syncs up with the body of the text.

Another thing that I am cognizant of, but haven’t yet figured out how to do, is make my blog more accessible.    I couldn’t use the computer for three years after my injury and still have to use compensatory strategies to use the computer.    So I am very aware that I want to make my website and blog as accessible as I can so that someone who has visual issues like the ones I have recovered a lot from, but still have, would be able to read at least some of my blog and website.

I reconnected with the accessibility community at SXSW.   I hope to get more help on improving my computer skills and knowledge to make using the computer easier and more efficient for me.   And to improve the accessibility of my website and blog.

 

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Optimizing my brain functioning — my new monitor!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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