awareness

Neuroplasticity and Resilience

aforrest Leave a comment

In the last couple of posts, I have been writing about my experience of neuroplasticity.  I am going to emphasize that I am writing about it, at an experiential level.

In other words, I am aware that my experience is anecdotal evidence for scientists and social scientists because to my knowledge, neuroplasticity has not been studied in a systematic way for as long as I have been living post-injury.  (According to Dr Allen Brown at the Mayo Clinic.   He presented the evidence from studies that have been done at the Mayo Clinic on Neuroplasticity after brain injury at the Brain Injury Awareness Day 2011 panel that he and I participated on as well as many other government, military officials and the wife of a wounded warrior.)

I am particularly interested in how vision therapy increases neuroplasticity.  I got to vision therapy relatively quickly after my concussion/brain injury because I couldn’t process what I was reading and because I was not getting help for this issue from my primary care doctor or my neurologist.  I wanted to get back to work and, even with my injury (and little overall self-awareness about its consequences or sequalae), I knew I had to be able to read.

In response to my last two posts about neuroplasticity  I am feeling following my 3 1/2 month unexpected setback this summer, I reached out to Sue Barry, a neurobioologist at Mt Holyoke for information about what’s actually happening in my brain.  I wanted to understand what’s happening.

Now I realize that there is value to me (and others) in trying to map my experience with what some scientists understand is happening in my brain.

In response to my question to Sue Barry PhD about the role of vision therapy and neuroplasticity, she wrote:

“Vision therapy changes the way we process visual information, and this can have dramatic effects on how well we function as both Anne and I have discovered.  In chapter 6 of Fixing My Gaze, I describe some possible ways that vision therapy techniques alter synaptic connections in the visual cortex.  In addition, our mental outlook  and mood alters the release of neuromodulators onto cortical cells and synapses from certain regions of the brainstem and basal forebrain.  These neuromodulators then alter the strength of existing synapses.  I cover some of this in the last chapter of Fixing My Gaze.  Thus, mental outlook and mood have powerful effects of brain function and plasticity.”   (By email, October 28, 2014)

So I have been reading and and re-reading her book, Fixing My Gaze: A Scientist’s Journey into Seeing in Three Dimensions by Susan R Barry with a foreword by Oliver Sacks. (It was copyrighted in 2009 by Basic Books in New York, USA)

And then this week, I went to an amazing panel at SXSW-Eco on “Networked Resiliency and Sustainability”.  It’s a long story about how I got to the panel, but the short answer is that much of my thinking about my brain and recovery is influenced by the research and work that I did on the broad topic of sustainability that I did at the Environmental Law Institute pre-injury as a senior environmental economist.   Post-injury, to the extent and when my cogntive function allows me to think abstractly,  I try to apply what I learned about sustainability and the economy to running my everyday life as an individual.   I learned alot about resilience when I finally got to rehabilitation after my brain injury, although it was not called that.  So I was attracted to the panel title “Networked Resilience and Sustainability” and wondered if it would apply to how I think about my post-injury medical problems.

It did.  It was fascinating and stimulating to see how the work on sustainability has been continued by others after the end of my career (due to the difficulties I had getting comprehensive post-injury treatment and possibly by the injury itself).

It was fascinating and stimulating to see the societal context for the work on sustainability that is being done around the world in 2014.

And it was fascinating to see how what I have learned about resilience and building networks to support optimal recovery from my injury is being done by cities to support optimal recovery after weather shocks such as hurricanes and tornadoes and other extreme weather incidents that we now understand the societal benefits of planning for on many different levels.

After listening to the talk, I understood that perhaps some of the euphoria I am attributing to neuroplasticity is really from the resilience I feel after getting past a setback that I know I am lucky to have cut as short as I did.

So I wondered how much of what I am describing as how I feel when I feel neuroplasticity is really how I feel when I feel resilience.  Probably some of both!

More on all of this in my next post.

Here’s the link to the “Networked Resilience and Sustainability” Panel at SXSW-ECo

 http://schedule.sxsweco.com/events/event_ECOP29859

 

 

 

 

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A week of possibilities

aforrest Leave a comment

I have had an amazingly clear and instructive and stimulating and exciting week!

Like I described in my blog post last week, I brain feels “clear as a bell.”

Given all that I have gone through this summer with my setback where my thinking was so confused and so disorganized and had to work so much harder than normal to try to function, having my brain feel “clear as a bell: feels great.

The vignette that I will always remember about this summer was when I unawarely blended a metal spoon in my blender.

I think I wrote about this blender incident in an earlier blog post.  And, I am going to write it again, for the emphasis.  I had noticed that I had put the spoon with peanut butter on it in the blender and told myself to remember to take it out before I turned the blender on.

And then I did not remember the caution to myself because my attention was so terrible this summer.

Instead of remembering to take the spoon out, I put the top on the blender which meant I could no longer see the spoon in the blender.

And then I turned the blender on.

And when I couldn’t process the information that I was getting from the sound of the metal blender trying to blend with the metal spoon, I turned up the blender speed thinking it was ice that needed a higher speed to blend.

Ah, me!

And now, my brain is processing quite well again and my thinking feels “clear as a bell”.

You may imagine that I feel like I can do anything!

My week has also been instructive because the clearness of my thinking is reminding me of my brain’s ability to change (in response to my eye exercises and my hard work to help it get better) means to me at an experiential level.   I feel clear.

And I can even feel connections being made inside my head that I was not able to make previously.   And that feels great!

Its been an instructive week because I got knowledgeable feedback from Maria Romanas MD, Larry Shutz PhD and Sue Barry PhD about my last blog post and the conversation that Maria and I have about my brain before I wrote the post.  Their feedback about the mechanics of what is actually happening in my brain right now was tremendously helpful.  It made me realize that I am describing the changes in my brain but that I don’t really understand the mechanics of the neuro plasticity very well other than I know its happening to me.

It was exciting to get the feedback from an MD and two PhDs–people who have studied this issue and are very knowledgeable about it –on what’s physically happening for me.   Sue Barry, a neurobiolgist helped me understand that the vision therapy (and potentially other things I am doing) are strengthening the connections in my neural pathways.

I hope to re-post the input that I have received from these three because the discussion with them on neuroplasticity this week has been  a fascinating to me.   I need to ask for permission from them first or to ask them to post their comments directly on my blog.

You see, as an economist, I have been trained to think about how an economy changes and post-injury, I have begun trying to apply my training to try to characterize who my brain changes.  Linking the changes that I can describe to the actual physical part of the brain is another step.   With the feedback this week, I have learned that I have a lot to learn about neuroplasticity, what it is and what it is not, before I can begin to make that step for myself.  The feedback sharpens for me some increased awareness of what I don’t understand about neuroplasticity.   Improving my understanding of neuroplasticity will help me refine my thinking and help me match my experiences to the science better.  Yahoo!

So I read the medical definition of neuroplasticity this week for what seemed like the first time and I looked for the research that the Mayo Clinic has done on studying neuroplasticity after brain injury to find the definitions that they used in their study.  (I will post these definitions on a latter post and I must work harder to find the Mayo work.)  Exciting stuff!

There was another opportunity this week, that I want to describe because it was so meaningful and poignant for me.

I volunteered to read to my 5 year old son’s kindergarten class this week.

As I prepared to go to his school to read, I realized how far I had come that I could read to his class.

One of the symptoms of my brain injury was that I had difficulty processing what I read.   My eyes looked at the words, but I did not know what I had read–I couldn’t take it in and trying to do this was exhausting for me.

I first became aware that I couldn’t read when trying to read Time Magazine at the Neurologist’s office.  However, this symptom was not understood, or treated, or even recognized as a problem by my medical doctors.  I was lucky in that it was diagnosed (and hence validated) by a vision therapy doctor, Dr Franke.  He treated me by giving me eye exercises, diagnosing prism glasses for me temporarily, and helping me develop compensatory strategies.

In preparing to read to 5 year olds this week, I recalled a difficult moment for me early on when a friend’s friend had asked me to read to her 2 year old while she got dinner started.  Books written for two year olds are about as simple reading as you can get.  So I thought I could read to my friend’s two year old.

However, it was the end of the day, and I was tired, and after reading two or three pages, I realized that I just couldn’t read the book to my friend’s 2 year old.

It was difficult to come to terms with that for myself.   But I had no choice.  I couldn’t do it.   I had to tell my friend, I couldn’t do it.   It brought me to tears.

And years later, look at me now!   I am the mom that is reading to my son’s class.   What a joy!

 

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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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Neuroplasticity = Hope

aforrest 1 Comment

Earlier this week, I tried to write about the neuroplasticity I am going through.  I tried to write about what neuroplasticity means to me.   And, why I can tolerate my brain changing right now which is both good and difficult.

My words were hard for even me to understand.  And my writing was awkward, at best.

So I stopped writing, saved the draft, and waited for inspiration.

Friday, I went to the Texas Brain Injury Alliance Conference in a suburb outside of Austin.

During the lunch time session, I listened to a talk by Maegan Morrow, a music therapist at TIRR Hospital in Houston.  As a music therapist, she is often able to help people who have difficulty finding speech or who cannot talk find a way to talk through music.   So she is a miracle maker for some.

During her talk, she let the following words roll off her tongue.

Neuroplasticity = Hope.

When she said it, I knew she had put it together for me.   I knew that that she had just given me the title for my blog post this week.

I also knew that once I started with that title, I would be able to write about what neuroplasticity means to me, in a way that wasn’t awkward!

When I talked with Maegan afterwards, she told me that she had never quite put neuroplasticity and hope together that way before either.

So it was a first for her, and it was exactly the phrasing that I needed to hear.

Neuroplasticity = Hope.

Neuroplasticity is the hope that my brain will change for the better than keeps me going.

I have experienced neuroplasticity.   I know my brain can change.

And I know my brain can change long after 2 years, which is when my doctors told me that my brain would not be able to change any longer.

My brain has been changing for going on 17 years now post-injury.

So for me, neuroplasticity = Hope.

When I experience neuroplasticity, it brings me hope.

It also brings me hope when I am not yet experiencing neuroplasticity.  And, that hope helps keep me going.   The hope fuels my optimism.

It brings me hope that I will continue to experience periods of neuroplasticity in the future.  In other words, that my brain will get better and better.  Not just better once, but better and better.

And better and better is a great positive cycle to have in one’s life, for anyone.

And, especially when I have a lot of plans of what I would like to accomplish to help others with brain injury learn get the help they need to live meaningful and full lives.

 

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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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My proposal for a panel at SXSW Festival

aforrest Leave a comment

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!

APB_82x52

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.

http://panelpicker.sxsw.com/vote/41233

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:
http://panelpicker.sxsw.com/vote/41233

Voting Instructions
So here is how you vote for me:

1. You register to vote here:
https://auth.sxsw.com/users/sign_up
Once you have done this first step, you have done the hardest part

2. Then you vote (vote = thumbs up)
http://panelpicker.sxsw.com/vote/41233

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

Anne

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A Better Strategy for the Home Stretch

aforrest Leave a comment

The thing about being conscious about figuring out a “plan for success” for getting through this final stage of my setback is that I can revise my first thoughts on a plan once I start working on my plan.

This is true any time that one is conscious about figuring out strategy.

The first thoughts are often not the ones that are the best!

That seems obvious now that I write it.

However, it was not obvious to me when I wrote my last post.

It took some reflection on my part this week for me to get to the place that it is obvious.

In the last blog post I wrote about what I imagine my strategy for the home stretch of this setback ought to be.   As I wrote the post, I remembered that my strategy had to include “holding back my inner over achiever” because I have come to learn that pushing hard to the finish line doesn’t work for me after my brain injury.

This week I reflected on what the rest of my strategy ought to be.

As I thought about what I had written in my post, it struck me that I was still trying to do things like the old me did things.

It struck me that just imaging the race as a horse race was my old me.

And, I laughed and laughed gently with myself when I realized that my imagination was from a place in my old me.

I am not my old me!

They say that old habit die hard.

Certainly this old habit of imaging strategies as if I were the old me, is still with me.

How funny.   After 17 years of recovery from my concussion, no less!

And then I reminded myself that the new me is the turtle in the race with the hare from the Aesop fables.   In the fable, the hare challenges the turtle to the race and the turtle wins.

“Slow and steady wins the race” is the motto for the turtle in that race.

I have learned that the new me does better trying to emulate the turtle (and not the hare).

That means that I am already holding back “my inner over-achiever” during the race and the home stretch should be no different.

So what are other components for a better strategy for the Home Stretch.

(#1 Remember, I am a turtle in the race.

Keep holding back my inner over achiever because I cannot push throw this)

#2 Build my support network for the last stretch (if its not already built).

A friend called yesterday and at the end of the call, she said, add me to the list of people to call on for help.

#3 Prioritize safety first.

Don’t do things that if they don’t go as expected, may make things worse.  Right now I am having some changes in my depth perception.  So I am not driving until it is safe for me to drive.   This means finding other drivers and changing some of my sons commitments.  Its not easy to change this routine, but if I am an unsafe driver right now, then I need to prioritize safety first for me and my family.

#4  Be gentle with myself.

#5  Slow down (further to incorporate the whole strategy)!

Since I am not processing information well and making more mistakes than usual, in addition to imaging being the turtle in the race, I need to go at a turtle pace with my support network in place and prioritizes safety and is gentle for me and is slow enough that each step is the best step I can take be it forward or sometimes backward to go forward.

What are strategies that you use to build your support network around a setback?

How do they work for you?

How do you manage slowing down and finding the right pace for you?

What is the hardest thing about slowing down and holding back your inner over achiever?

 

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The Home Stretch

aforrest Leave a comment

I had the intuition that I should title my blog post “The Home Stretch” while I was meditating.

Because my brain is still a little more groggy from all that I have been through the last 2 and 1/2 months, I had to think a little more about what the term sporting event the “Home Stretch” came from.  At first I thought it was a baseball analogy about the run from Third to Home Base.

As I reflected on it, I realized that I have heard it used that way by the announcer at baseball games.  And then I realized that the idiom comes from a horse race.  In fact, when I looked it up in Merriam Webster, I found that the first definition is “the part of a racecourse between the last turn and the winning post” and the second definition is “the final stage”.

This week, upon much reflection, I realize that I have turned the corner on the last turn and I am in the home stretch of getting back to my baseline before my dental appointment.

As I thought about what goes on in a horse race between the last turn and the winning post, I realized that there is a lot of strategy that goes on in that final distance.  I have seen many races (on television) where the horse that wins the race is not the horse that is ahead at the turn, although sometimes the horse that is ahead at the turn wins.  In a horse race, it is speed that wins, but it is also strategy.

What reflecting on what happens in a horse race means to me now is that I have to be careful and conscious about my home stretch.   And I have to use all my strategies to get from where I am now (roughly 80% of my previous baseline) to where I want to go (back to the 100%) in order to get to the finish line (where I want to go).  And in my case, I don’t want to leave all my energy on the field, like the horses and riders do.  I want to be able to keep going and building after I get to back to where I was before all this happened. In my case, its not how fast I cover this distance to 100%!  Its about doing the things that will get me there and which I can maintain after I get there.

In addition, I want to get back to 100% of where I was, and possibly a bit better than 100%.  (I talk about better than 100% of my baseline in my blog post called Focusing and Refocusing). And, I want to be able to keep going once I get back to where my old “new normal” was.   I want to keep my new new normal evolving, in other words the benefits of neuroplasticity.

Now, what I have learned from my experience about setbacks is that, if I try to get down the home stretch as fast as possible, I may never get back to 100% (of my baseline)!  

And I won’t be able to sustain that 100% once I get there.  

And, I won’t get to more than 100% which would be the best outcome and what I am hoping for.

When I say I have learned that going as fast as I can on the homestretch does not work from experience, I mean that the temptation is to try to race there as fast as I can! I am tired of having to compensate around my brain not working as well as it did.  I am tired of telling others that my brain is still not working well as well as it did.  My husband can see it, and my close friends who listen carefully can either see it or hear it.   But lets face it, most others who don’t know brain injury cannot.   And even if they could, I am tired of having to work further around my work arounds!  I am tired of taking cognitive rest.   I am tired of telling people I haven’t been able to do much this summer and thus have not gotten to all the things that I thought I would get to this summer including things I may have told them I would get done for them.  I am just plain tired of all this. And as an over achiever prior to my brain injury, I learned to push hard in the home stretch.  I learned it so well it became habit.

You see, I have learned over and over that my habit of pushing hard before my brain injury does not work.   So pushing harder in the home stretch, which was my pre-injury habit, also won’t work.

I have seen many others, not just myself, push hard to get through a concussion.  It doesn’t work. I have to consciously unlearn all my habits of wanting to be done with this last stretch.

So what is my strategy for this particular home stretch going to be?

The first step to changing this strategy is to identify the habitual problem of wanting to race through it.

I have done that.

The second step is to figure out how to be conscious about it.

I have begun to become more conscious about it by writing about it.  

That is one thing I love about writing my blog. Writing forces me to reflect and think about what is going on for me and how I am handling it this time.  

And that reflection sometimes leads me to different answers than I had when I started writing.

And in reflecting and writing, I have become more conscious that I have been at this (or a similar) juncture before, many times in fact in my recovery.

As I write, I am beginning to remember that I have even discussed this very issue before.   I now remember a conversation that I had with Dr Lebedun, years ago.   Dr Lebedun is a very bright and intuitive Neuropyschologist that I found when I lived in Northern Virginia.   I now recall that “holding back my inner over achiever” should be a part of my strategy now.

But its not all of my strategy.

I need to be conscious about figuring out my strategy and using what I have learned prreviously.

I need to make a “plan for success” about how I will approach it.  By the way, I attribute the concept of making a “plan for success” for some work I have been reading by Dr Larry Schutz. (More on his work later but here are the resources http://givebackorlando.com/hepusef/hepindex.html)

How do you approach the home stretch — whether it be back to your baseline before a concussion or back to a “new normal” baseline with persistent symptoms following a concussion.

Have you approached a home stretch in a way that you wouldn’t try again?

What happened?

What are your best strategies for the homestretch?

What has happened for you when you used them?

Who taught you or how did you learn your best strategies for the homestretch?

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Useful information

aforrest Leave a comment

This week has been a little like last week.

I am still struggling with not being 100 % back to where I was before my dental appointment that caused my setback 9 weeks or so ago.

I am doing what I can to keep my mood up.  Keeping my mood up helps me tolerate dealing with the symptoms of sleep issues and my head working more poorly than I have been used to.  Keeping my mood up does not solve the problem, but it does keep me more level headed and the more level headed I am about my brain working more poorly, the more I can take what my brain is doing (or not doing) in stride.  The more I can laugh at some of my foibles and the more I can help others understand that what they are seeing is indeed what I am experiencing.  Or deal with it when they cannot see that anything is different for me because they either don’t know what to look for or don’t know me well enough.

My husband was telling me this week that he is having a tough time understanding me.  I have come to appreciate that he can see the decline in my functioning quite acutely and to listen to him (rather than get defensive) for clues as to how he sees it.   When I listen to how he sees it without being defensive, we can work with each other to help both of us.  When I cannot listen to him about it, my poorer functioning can separate us.  I can feel like he doesn’t understand how hard it is for me or how much I am doing to try to make it better.   One his side, when we get separated around my brain injury related issues, he says that he feels that I am not appreciating how hard it is for him.   Its funny because we have had to learn how to not let our adorable son separate us on issues.  You would think that would help us, but it is much harder to not let my injury separate us.

My husband told me that it’s as if my sentences are thoughts in process rather than sentences.  After I thought about what he told me carefully, I realized he was telling me his side of exactly what I feel.  He was saying it in his words.  What I realized from talking with his is that my slower processing right now is showing up in my conversation.  I cannot process what’s happening around me fast enough.  Which means that I cannot pull it together to communicate efficiently or effectively to others around me, even though I know I am not doing well and I want to be able to communicate that.  Of course, this is a recipe for frustration above and beyond the frustration that I am already feeling because my brain isn’t working how I am used to it working.

It is useful to know his point of view.  I am not sure I can do that much to help it, but its good to understand what he’s seeing.

It is useful to know from him that often my paragraphs are not started with a topic sentence but are just a collection of sentences in which I hope that I will learn the topic sentence by getting my thoughts out in front of others.   This is occurring more often after the setback started.  And it does help to know that my husband is experiencing it because it reminds me to try to remember to start with a topic sentence when possible when conversing with others.  It also tells me that if people are not understanding me the first time I try to tell them something, that I should start with a topic sentence the second time I try to explain my thoughts to them to get get my point across.

Here are some of the things I did this week to move my setback recovery forward.

I made an appointment with my neurologist, Dr Hill.  Since I have plateaued in terms of getting back to my 100%, I figure he may have some suggestions.  Its been over a month since I have seen him last and I need to get his input on next steps.

I also made an appointment with Russ Adams, a mental health professional, who knows brain injury.  I had gone to see Russ Adams over ten years ago when I originally did rehabilitation here in Austin.  He already knows me because we worked together before.   He worked at St Davids Rehabilitation Hospital when I saw him last and he is familiar with the difficulty that people with brain injury had in getting the resources they needed and the journey that they travel to get better.

I also got some useful information this week that was very helpful for lining up my next steps to try to get the resources I needed to try to get me better.   Over the past couple of weeks, I had reached out to Dr Andrea Laborde and told her a little about what is going on in my life.   Dr Laborde is currently working at a concussion clinic in Australia where they take concussion recovery for civilians very seriously.   I was introduced to Dr Laborde by Ann Marie McLaughlin (and other folks) from ReMed, a forwarding-thinking Rehabilitation Company located in the Philadelphia area.  Dr LaBorde and I did a talk on mild TBI issues in about 2005.   More on this later.   Dr Laborde and I also worked on the Ontaria Neurotrauma Foundation guidelines on persistent symptoms following Mild Traumatic Brain Injury www.onf.org.   I have written about this work in previous posts.  I wanted to get Dr Laborde’s perspective on my setback.

Dr Laborde said brain injuries cannot get worse, but it is well known that the symptoms can reemerge after an external event after they have been managed.  Andrea told me that the medical term for the problem that I am having (which I have been calling a setback) is recrudescence.  She told me that at her clinic they treat a recrudescence by treating the symptoms.  In my case, that would mean treating the sleep issues, cognitive deficits, vestibular and/or vision issues.   The truth is that I have begun to treat some of my symptoms by adopting some stricter strategies on cognitive rest with the computer and with my mental effort. From her email, I realized that being as comprehensive about adopting stricter strategies, with the help of professionals may behoove me.  I will talk with my neurologist about this when I see him this week.

The other thing that happened somewhat serendipitously this week was that my former vision therapy doctor, Dr Amiel Franke, called me on Monday to ask a favor.   He is retired and is 90, but he still is very interested in what is happening with his former patients and I had had lunch with him last year if DC.  He asked me how I was doing, and I did not hesitate to tell him about my setback.   His response was, “I know exactly what is wrong with you”.   Now you might think that its hubris that he could diagnose me over the phone, and after telling me what he thought, he did advise me to reach out to my vision therapist here in Austin, Dr Denise Smith, to follow up.   The thing about Dr Franke that I know is that he’s always right.  At least he has always been right in the past, which means I know his batting average is 100% with me so far.

I made an appointment with Dr Smith and I will talk with Dr Hill, my neurologist, about the vision aspect also since he is a neurologist that believes that considering what is going on with the visual system is important in brain injury recovery.

On to next week…

Have you had a reemergence of symptoms after an external event?

What happened?

How was it treated?

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Re-focusing and binocular vision

aforrest 1 Comment

I see it as my job to get better and I am still working (hard) to get back to my baseline before my dental appointment on June 2.   Its been two months now.   Its been quite a struggle.  I have had to use all my resources and have had to find new resources to help me.   But I am getting there.  I think I am at 80% now, which means that in the past three or four weeks, I have made about a 10% improvement.

I would like for my improvement to go faster.   But realistically, I am grateful for that improvement.

My cold/bronchitis is lingering but almost over.

And I have been noticing that my vision and brain are reorganizing this week.   A visual/brain reorganization is about the best thing that could come of this setback.   Yes, I have felt my vision reorganize, and my brain reorganize.   The reason why I say that that is the best thing that could come out of this setback is because when I experience a re-organization, I know that I will get to a more functioning place with my brain once I get back to where my baseline was.

In other words, I will likely be better than I was before this setback.

Getting to a better place does not mean the setback was “worth” it.  It has been a struggle, to put it lightly.  It has taken all I have to give.   And its not over.

What getting to a better place means is that I have made the most of this period of setback.  In statistics, given that I am having a setback, I have ultimately used it to move forward.

Here are the highlights of what I have done this week to help myself:

I reconnected with my former speech and language therapist, Liz Joiner,  who gave me suggestions including some new resources for visual therapy and how my neurologist, Dr Hill, could help me get to visual therapy resources. Since visual therapy has helped me a lot, and since I am going through a visual reorganization, getting professional help with the next step, is definitely something I should consider.  Of course, they would have to do an evaluation to help the professionals decide if they can help me.

Liz also gave me some suggestions for a therapist who understands brain injury to give me some emotional support through this difficult time and who might be able to give me guidance and connect me with other resources here in Austin.

With the help of talking with others, I realized that the antibiotic I was taking for my bronchitis was wiping me out. So I started taking more probiotics.   That really seemed to help my gut — I could feel the difference.  What I have learned is that there are a lot of receptors in one’s gut.  And I have learned that helping my gut can help reduce some of the confusion in my head that I feel when I am sick and taking antibiotics.

How did I know I have begun having a visual reorganization?  My eye doctor in Washington DC, Dr Franke taught me how to recognize them.  One way that I recognize a reorganization is when I all of a sudden can see depth in a way I could not see it previously.  Its like flowers all of a sudden “pop out” with depth, that I didn’t previously see.

After my brain injury, I had depth perception issues.   What I know now is that I also had less than full monocular vision prior to my injury.  One of the benefits of doing vision therapy after my brain injury is that I have started to get back increased binocular vision and that the increased binocular vision that I am getting will make my vision system better than it was before my injury.

I want to be talking more (in my blog) about the benefits I have gotten from vision therapy in my recovery from brain injury.   For now, I want to say that Dr Susan Barry talks about her experience of getting binocular vision in her book “Fixing my Gaze”.   Dr Barry is a neurobiologist.  She understands the brain and brain development.  She describes getting binocular vision as a journey into seeing in three dimensions, in her book.   Actually, Dr Oliver Sacks first wrote about her journey in The New Yorker Magazine,  He called her “Stereo Sue”.   Dr Sacks was interested in writing about her story because getting binocular vision later in life is something doctors did not used to think that you could do.  And she did it as a result of finding vision therapy and optometrists who knew how to help her.

To finish this post, I also had the insight this week that I needed to let go of all the things I had planned to do in June and July that I have not been able to do so far.  I have been to sick to do them.

One of the things I did this week was start to re-focus on what I need to get done this month before my son’s school starts.   So my re-focus moved to a forward-looking strategy from a catch-up strategy.

And I also consciously worked on rebuilding this week.   I used Andrew Weil’s strategies of improving my surroundings to help lighten my mood and make me smile.  I bought flowers at the store and bought a sage plant with beautiful leaves to put by the sink to remind me of my new increased depth perception.   And I bought basil and made basil pesto which I love.  I started investing in the future, which is a good sign that of recovery for me. There is a point in recovery where I start feeling ready to invest in the future, and I have reached it.  I know that getting to the point of re-focusing and investment is a marker that my recovery is taking hold.

With my new vision for the future, its easier for me to get support for this last phase of my recovery back to or still hopefully surpassing my previous baseline.  Both from the inside and from others.

Yahoo!

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