Tools

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.

 

Read More - The Road Ahead for the Blog–Part 1

Why Telling Our Stories Matters — Part 1

aforrest Leave a comment

Earlier this week, I agreed to do an interview with a Journalism student named Eli Hillen.   He’s doing a photo journalism project on the topic of loss.

He reached out to the Brain Injury Association of America looking for someone to talk about memory loss after brain injury.   They reached out to me.

I am not exactly sure what motivated me to make some suggestions to him about resources and people who could talk with him about loss after brain injury.

I did want to make some suggestions to him to guide his search.   I  have seen some articles on the topic of loss after brain injury and I think there is so much more that needs to be written about it and done well.

I must say, though,  that I have never felt the urge to contribute about the issue of loss after brain injury before.

I had a packed week, so it wasn’t as if I really had any extra time to talk.   But I responded with some suggested resources that Eli should read.  And then Eli said he’d like to talk with me by phone.  And then someone cancelled an appointment, so there I found myself talking with Eli and answering questions about the topic of loss for Eli’s project.    What I thought would be a fifteen minute call was so engaging that it lasted over an hour.

And, as is true anytime I answer questions from a journalist or student, I find myself thinking about my injury and recovery in a way that I wouldn’t have done had I not spent the time and energy to do the interview.

To go a little deeper, I had to write and tell my story quite a bit to get to the point where I could process and remember and understand my story for myself.

I had to do a lot of work writing my story for myself before I could tell my story and before I could give interviews.

Writing and telling my story over and over has helped me to process many difficult emotions–like anger and grief and frustration–to name a few.

It’s also helped me come to terms with the reality of my injury and the difficulty of finding appropriate resources to recover.

Often I have written my heart out about whatever is in my head.

Then, when I have read what I have written, I have cried and cried.   There is something about seeing one’s words in black and white.

Writing has helped me see concretely the difficulties that I have had with just writing my thoughts and how my verbal expression has changed after my injury.

The starkness of my words on paper has helped me understand my deficits better and feel my feelings about the change in my abilities and my functioning after my accident.

And answering the questions of journalists and students has also helped me get to questions that I would never have thought to think about for myself.   Hence answering questions from others has allowed me to examine topics that my brain would not have gotten to on its own after my injury.

In examining the questions when asked by others, I have had to reach for considered answers.  Its almost like I can feel my neurons try to reach out to parts of my brain that aren’t yet so accessible to me because I haven’t gone there in my brain yet.

So I answer what is top of my mind, and then sometimes, I will find myself thinking about the question and a larger, fuller answer later.

When I first started talking to journalists and students, sometimes I wouldn’t be able to sleep that night, because my brain would still be working on an answer.  I learned how to get up at night and write things down so that I could get the thoughts out of me.  After I had done that,  I could sleep.

The next morning I would send off my written thoughts or corrections to the journalist or student (if they were interested in this information that my brain eventually wanted to express but couldn’t express on demand at the interview).

Over the years, I have been able to express more during the interview.  Thus, there was less information needing to come up out of my brain later to keep me up at night.

So the process of telling my story to others has improved and its much easier for me to answer questions in an interview than it used to be.

But, I am getting sidetracked.

Back to my interview with Eli.

There are two big gifts that Eli gave me with his two questions during the interview.

1) While I did not see it coming before the interview, I was surprised and pleased that Eli asked me gently to talk about the flip side of loss… which is gain in the long term after the loss.

2) And, the question that he asked that I found so interesting and hard to answer was:  “What motivated me to try to get back the things about my brain that I lost?”   I keep coming back to think about that.

So here is my more considered response to these questions:

I lost so many things with my injury… But over time, I have had had many gains also:

I lost my sense of self so I had to find myself again and I am a bigger person for doing that work,

I lost my ability to function independently so I had to learn to function dependently and independently when I could,

I lost my brain as I knew it (which means I lost what it meant to me to be me) and I had to find how to learn to live with my injured and recovering brain and eventually I found a bigger and more whole concept of what it means to be to be me),

I lost my ability to do economics which I loved, and which I had invested many years training to be, so I had to learn how to do the things I could still do that I loved and do other things I loved and relearn what I could,

I lost my income so I had to learn to meet my needs with less income and less abilities to to provide for myself,

I lost control of my life so I had to learn to live life differently until I regained some control of the direction of my life,

I lost my athleticism and had to learn to rebuild those abilities,

I lost many of my friends so I found new ones and had deeper relationships with those who remained,

I lost my ability to be understood so I had to learn improved ways to be understood,

I lost my ability to think and so I had to learn to use others thinking to help me think and learn to use more of my senses as well as my brain,

I lost my life as I knew it but became a wife to Michael and a mother to Daniel,

And I lost many other things as well and have worked to regain what I could and be comfortable with what I haven’t yet regained.

Wow, what an interesting way to look at my journey.  Thank you Eli!

And the question of what motivated me to want to get better was something I hadn’t really considered either.

The short answer, which is what I said to Eli, more or less, is that its painful and depressing to live with all the limitations to life that dealing with a brain injury brings and to be so dependent on others after one has experienced life and the freedoms and responsibilities of being an adult.

To be asked the question of motivation suggests that there was an alternative.

The alternative was to not get better.

And I must say, I never once considered not getting better to be an option.   There was a choice.

I was depressed at times.

I was down.    I felt suicidal at times.

I did not know how to get better often (sometimes on an hourly basis) and needed a lot of help learning how to get better.

But I never, ever considered the alternative of not trying to get better.  It was a choice not worth making.

I am not quite sure why that revelation is so meaningful for me right now.

It just is!

And telling my story, helps me see my journey differently.

Thank you Eli!

Telling our stories, when we can, helps us with new perspectives on our journeys.

What losses have you had after your injury?

Have there been abilities or functioning or meaningfulness that you have regained with time?

What motivates you to get better?

Have you tried telling your story?

 

 

 

Read More - Why Telling Our Stories Matters — Part 1

Vision therapy — Part 1

aforrest Leave a comment

Of all the therapies that I have had, I believe that vision therapy has helped me the most.

I wanted to write about vision therapy today because the NeurOptometric Research Association (NORA) is holding their annual meeting this week in Cary, North Carolina.

I wish I could be there.

Many of the speakers at the meeting will be discussing how vision therapy can help with recovery from persistent symptoms following mild traumatic brain injury/concussion.

Here’s the program:

http://nora.cc/images/stories/nora-conference-brochure-2014.pdf

A friend of mine, Cavin Balaster, is keynoting at the conference.  I am so excited for him.    He will be talking about how vision therapy has helped him with his recovery from a severe brain injury.

I first met Cavin about two years ago at a Brain Injury Association of Texas conference where I was speaking.   Like I said, Cavin had a severe injury after falling from a tower in Brooklyn, New York.  His recovery started with coming out of a coma.  His early recovery was at Mt Sinai Hospital in New York City.

I met Cavin after he was released from the hospital and inpatient rehabilitation.   He and his mom had returned to Austin to begin the next phase of recovery.

Like me, Cavin was doing vision therapy which he started in NYC.   By the time I met him, he was working  with Dr Denise Smith OD here in Austin who I had begun working with also.   Cavin and I bonded quickly as there are not many people who have been fortunate enough to know about vision therapy and who have experienced the improvements that come from it.

We also noticed, while eating lunch together with his mom, Kim, that we both were choosing what we ate quite carefully.  We both wanted to eat to support our brain injury recovery as best we could.

A month ago, I invited Cavin to join me to watch the Dewey Winburne awards at SXSW-Interactive.   The Dewey Winburne awards are awarded to entrepreneurs and technologist who increase accessibility worldwide.  The Dewey Winburne awards are very special part of SXSW for me.   My former mentor, Dr John Slatin, at the then-Institute of Technology and Learning at the University of Texas (now the Accessibility Institute) was very involved in the accessibility community here in Austin.  Dr Slatin had learned to overcome loosing his eyesight later in life, and he taught me a lot about compensation strategies in his life.  He also helped me launch my speaking career.  He motivated me to write about how I was improving after brain injury and my efforts to find rehabilitation and get back to work.   He told me that there was little information about how to return to work in the blind community and that he imagined there was even less literature about doing it in the brain injury community.    John also got me involved in contributing to making website accessibile for people with cognitive disabilities.

Here is info about the 2014 Dewey Winburne awards:

http://sxsw.com/interactive/awards/dewey

I invited Cavin to watch the awards as he is the first person that I know who has done a successful Kickstarter campaign to support his book about his recovery.   Many in the vision therapy community reached out to support his endeavor because of his enthusiasm and improvement and his passionate desire to help others.

http://www.cavinbounce.com/

I will talk about teh benefits of my vision therapy in a later post!

Read More - Vision therapy — Part 1

New Learning — Part 1

aforrest Leave a comment

Before my brain injury, I did not know that one of the consequences of untreated or inappropriately treated  from mild traumatic brain injury/concussion was that new learning processes of the brain can be compromised.

I know now that my ability to learn new things is quite different from what it used to be.

In fact, I will go one step further back  than that.    Before my injury, I did not even know anything about the process of new learning in my brain!   It just happened.

My brain just did what it did, and I had little insight into it.

I guess I had some insight into my moods–when I was depressed or down, for example, I would at some point recognize that I was down.

But I had little insight into the cognitive processes that allowed my brain to learn new information and function in my day-to-day life and work.

After my injury, I have had to learn to develop a lot of insight about my cognitive functioning in order to try to get as much out of my brain as I can and to improve my functioning.

After my injury, I began to develop some understanding of when my brain was doing different cognitive functions–like short term memory and trying to anticipate.   I began to develop understanding by experiencing that my brain no longer worked in ways that I had come to expect it to work.  (Since I was not getting to appropriate treatment, I learned this through painful trial and error in survival mode.)

My understanding of how my brain worked was moved forward with my vision therapy and other therapies as I received them, eventually.   For example, when I finally received speech and language therapy (over 3 and 1/2 years after my injury) and eventually occupational therapy the awareness of my cognitive functions helped alot.   Dance therapy helped much later also.

Since speech and language therapy and occupational therapy sometimes worked directly on attention and working memory or helped me learn compensatory strategies to augment attention and memory deficits, my insight into my brain’s cognition increased.    That is to say, helping me with the basics of getting better attention and memory and compensating around attention and memory, I began to understand more about more complicated cognitive functions that relied on attention and memory (or at least that is how I experienced it).

Cognitive functions are different from mood, however, they can be affected by mood, so it was also necessary for me to learn how my mood could make it more difficult for my brain to perform cognitive functions.    For example, its hard to pay attention and concentrate when I am anxious.  So I had to learn to calm my anxiety (often about my brain not working properly in that situation) so that I could think as best I could.

I have also learned something about the variability in my cognitive functioning around my emotions and why reducing stress and being optimistic is useful to keeping my cognitive functions performing as best it can.

I started this blog post with the idea I would talk about new learning and the difficulties around new learning that I experience with my brain injury this week.

I realized I needed to say something about cognitive processes and also emotional processes, so I have done that.

I want to end the blog to say that this week there have been so many things going on (learning about my son’s kindergarten next year, trying to figure out next steps for my blog, trying to organize my thoughts about next steps now that spring break is over, and new information about scheduling camps for my son this summer, to name several.)   All these things are in addition to my “normal” abnormal routine.

With so much new information for my brain to process, it just comes to this place where I cannot process any more information.   I cannot learn anything new.

I am reminded that my head used to physically hurt when I got to this place.   I would get headaches and I would get irritable.   I would also get frustrated.

I have learned the cognitive strategy called “ride that through”.   I have learned that its not that I won’t be able to learn in the future, at my new slower rate.   Its that I need to rest my brain until it all sorts out.   I know that rest and pulling back will help me right now.   I will ride the discomfort through.  And one day it will be comfortable again in my brain.

I am glad that I know this strategy now and that I know it will work.

Do you have issues with new learning when too much is going on?  How do you support your brain when this happens?   How do you deal with it?

 

 

 

 

 

 

Read More - New Learning — Part 1

My Return to Work after concussion/mTBI story

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The topic for the Congressional Briefing for Brain Injury Awareness Day on Capitol Hill on March 12, 2014 was Return to Work.

I cannot wait to hear what the Briefing Panel Members had to say.   Of the panelists, Jim Kelly, from the National Intrepid Center of Excellence at the United States Department of Defense, is one of my all time favorite researchers/clinicians, and I find his research and insights so helpful in general, but it has helped me to understand my experiences after my concussion.    I volunteered at the International Brain Injury Assocation’s meeting in the Washington DC area several years ago just so that I could hear Dr Kelly speak.  It was well worth it.

Since “Back to Work” was the topic at the Congressional Briefing this year,  I thought I would write down my (ongoing) return to work story after my mild traumatic brain injury/concussion.

First, I want to mention a little history about speaking and and writing and the Congressional Briefing.    I was the first individual with a brain injury to speak at Brain Injury Awareness Day in 2011 and I spoke about the Value of Rehabilitation.   (Survivors from the military and a former pro-athlete and survivor, Chris Nowinski, had spoken in previous years.)

Preparing that speech with the capable help of Leila Afshar who worked patiently and tirelessly to help me figure out how to tell my story about my journey to rehabilitation.   She modeled for me (through alot of trial and error) how to distill my story.    We had 4 minutes to tell the story of The Value of Rehabilitation in my life.   My speech, and the standing ovation that I got from it, moved my advocacy forward tremendously.

Since then, I have had more practice on trying to emulate what Leila helped me learn how to do — distilling the important parts of the my story.   Working on the blog has helped me write shorter pieces.  It has helped me learn that I often think I have one thing to say and its really about 5 topics.   And that I need to unpack what I think is one post into the different parts.

My return to work story:

I did not expect my injury in a car accident to lead to any work loss.  I had my life to lead and my research to do.

When I was diagnosed with a mild TBI by my neurologist 3 weeks after the accident because I was having symptoms, I still thought I could rest and return to work.

I got to two helpful therapies early on my own — chiropractor help and work with an optometrist who did vision therapy.   I could not absorb what I was reading and knew I could not work if I couldn’t read.

It took me three and 1/2 years to get to the brain injury rehabilitation in an outpatient setting.    I still cannot explain all the reasons why it took so long.   I know it still happens today.

Brain injury rehabilitation turned my life around.   It was complimented by the chiropractic work and the vision therapy I was already doing.   Outpatient rehabilitation gave me more hope that I could return to some kind of paid employment.

During outpatient rehabilitation, my speech therapist, Liz Joiner identified giving speeches as my one “transferable” skill from my old job.

She also helped me start an unpaid internship in Dr. John Slatin’s office at the Center for Technology and Learning at the University of Texas (now the Accessibility Office at UT).

I got married and my husband and I moved back to DC for Michael’s job.

I met Carol Bray at Trisha Meilli’s book-signing for her book “I am the Central Park Jogger: A Story of Hope and Recovery.”

Carol Bray helped me meet Susan Connors (now President and CEO at the Brain Injury Association of America, then at an organization called NASHIA).

Susan introduced me to Robert Demichaelis, a survivor and volunteer at the BIAA office.

I went to visit Robert at BIAA.   He told me there was an extra desk in his office.   He told me I could use that extra desk.

I was so excited, I did not know what skills I had for return to work yet, but I had a desk to go to!!!   That was a start.

I started volunteering at BIAA.   Just getting to Tyson’s Corner, Virginia which was about 40 minutes from my house in Arlington Virginia was about all I could do for a long time.

Learning what to say in the office for small talk was another still I had to learn.  When someone asked me how my weekend was, I needed to learn what to say.

When BIAA help a State of the Art conference on TBI, I asked Dr Allen Bergman, then-president of the Brain Injury Association of America (BIAA)  if I could speak at the conference.   He was looking for someone who hadn’t had treatment in first two years and then got better after treatment.   That was me!!!!

At the conference I learned about how difficult it could be to return to work after even a mild brain injury.   I cried when a researcher talked about the data on the return to work success rate for people with coma versus concussion/mild TBI.    I cried because I thought it was just me struggling against all odds to get appropriate treatment to to go back to work.  If you believe the data, it was not just me.   People with concussion/mild TBI had lower return to work rates than those who had overcome coma.

Later when I was successful getting off the waiting list for Brain Injury Services of Northern VIrginia, a case mamnagement group, they helped me with basics that I still needed help with .   I was roughly ten years out after my injury.   They helped with getting transportation services (I had been trying to take the bus and often got lost or got off bus in wrong or dangerous places).

They also helped me with other services that I needed including support services for me and my family.

Long story short,  I learned that I could do meaningful volunteer work and continue my public speaking to help others with brain injury.

I realized that although my goal was to return to work, I needed to get appropriate health care and support services before that could happen.

It wasn’t that I thought I could skip the necessary steps to support my work activities, it was that I didn’t know any better about the steps that had to happen.

 

 

 

 

 

 

 

 

Read More - My Return to Work after concussion/mTBI story

Inspiration from finding a new good sleep doctor

aforrest Leave a comment

I had a great visit with a new doctor this week.

We have been in Austin now for almost 2 and 1/2 years, and I am still working to put together the full medical team of people that can help me with my recovery after Mild TBI/concussion.

The new Doctor whom I saw this week is trained as a neurologist and specializes in promoting quality sleep.

Many people do not know that quality sleep is very important for brain injury recovery.

In fact, what I have learned is that many of the symptoms of poor sleep are similiar to those of brain injury.

I was first diagnosed with a sleep disorder about 5 years ago after I had experienced another concussion when I fell on my butt and hit my head.

From my advocacy work, I knew that sleep disorders are highly correlated with mild TBI so it made sense to me to do the tests to see if I had a sleep disorder.

Even though I thought it made sense to do the tests, I was pretty sure that the sleep tests would rule sleep issues out (as opposed to tell me that I had an issue).

So it was a big surprise to me to hear that the sleep tests revealed that I had sleep apnea.

I was glad to hear that I had sleep issues though when my neurologist framed it in the way that he did.   He said “we don’t know how much of your brain injury is the brain injury and how much is the result of chronic sleep issues”.     The good news here is that improving your sleep is something we can do something about easily and hopefully it will help you.

So I started paying attention to my sleep health.    Mind you, this all was happening at the time that my son was about 6 months old.    Most moms and dads get less sleep, and having a child meant we were not getting the same amount of sleep that we had gotten before our son was born.

And my sleep got better and my energy got better and it was a total upward spiral at a time that it was tremendously helpful to be getting a push upward from better sleep.

And the improved sleep led to this very exciting upward cycle.   I had more energy during the day, which meant I could take on more exercise and then, in turn, the increased exercise meant that I had more energy and  got more sleep because I was tired in the right kind of way.   Not to mention that exercise is good for brain functioning.

When we moved to Austin, I also began to loose weight and have maintained a 10 pound weight loss.  And while I wasn’t heavy before, the weight loss helped me feel better and helped me want to exercise more.

So this week, I was able to go in to see the new doctor to continue the care around sleep that I was getting in the DC area.

I felt inspired about the next steps in talking with the new doctor.

I heard him say that sleep issues after mild traumatic brain injury can be sleep apnea or they can be caused by the area inside the brain not working properly after the injury and thus not regulating sleep properly.   He said we would try to figure out which it was.

I have seen alot of doctors following my injury, and many of my experiences with new doctors haven’t been so inspiring, to say the least.    So I am happy to report how exciting finding a good new doctor is for me!

Read More - Inspiration from finding a new good sleep doctor

Inspiration — Part 2

aforrest Leave a comment

Before my injury, I often found inspiration in my life through sports.

I am a Duke Blue Devils Fan.  And I love it when my team inspires me.   I played Basketball in High School and loved it.

But it wasn’t until I moved to North Carolina to attend graduate school in economics at Duke that I really became an avid college basketball fan.   The rivalries in ACC Basketball take the sport to a whole new level.   And I realized that following the team provided good everyday conversation with those around me.   From my perspective, the choice was either to follow basketball, or not be able to talk to those around me about anything but economics during basketball.  I chose to follow basketball.

And the biggest moment of inspiration was watching the Blue Devils journey to win their National Championship in 1991.

To understand why the 1991 season was so inspiring, you would need to know The Blue Devils had lost by 30 points to UNLV (University of Nevada at Las Vegas) in the final game in 1990.

I remember sitting on the bleachers at Gregory Gym with other students cheering for Duke to make a come-back.  Duke trailed UNLV almost the entire game.   We were cheering and thinking — if our team could just get within 20 points, this could be a game!   That is a hard cheer to have to be making.

So knowing that my team had lost big in a big game on national tv in 1990 made watching their win over UNLV  in the semi-final game thrilling the next year.

I watched that game in Gregory gym also and it was a hard fought game.  In the end, Duke was victorious.

I went to Gregory Gym to watch the game in order to have the memory of watching the team win replace the memory of the loss.  Their win is indeed what I remember.

Then, they went on to win the National Championship in the final game over Michigan.

Watching the team play on tv now, always brings back the great memory of watching  their ultimate triumph in the 1991 season.   It inspires me.

Another moment of inspiration, before my injury,  that I carry with me is an experience of going to the Fine Arts Museum in Boston over the Thanksgiving day weekend while visiting my aunt and uncle.    I was looking carefully at a painting I liked in a back room, off the beaten track.   And I realized that Steven Wright was looking at the painting next to me.   I had seen Steven Wright perform his comedy at Duke and had met him through his then-manager Tom Hutchinson, a friend of a friend.

Steven told me that in order to spur his creativity and to keep himself inspired, he had to get away from his daytime routine and he would visit museums or do something different.   I had never thought about doing something like that to inspire my work.

Later,  a couple of years after my accident when I was still trying to keep my life from going from bad to worse, I started the habit of planning to go to the Smithsonian museum in Washington DC where I lived for an hour of month to inspire myself through art.

Thank you Steven Wright for teaching me such a great habit — it was one of many things that kept me going!

I have been really challenged by both my injury and by the difficulty that I had finding and getting to all the appropriate rehabilitation I needed and I am grateful to all those who helped me find my way including many great health professionals and doctors as well as friends and family.

 

Read More - Inspiration — Part 2

Finding inspiration

aforrest Leave a comment

I have had an enormously frustrating ten days for a number of reasons.

So finding tremendous inspiration in a phone call with another survivor on Monday has helped me focus on the inspiration (rather than the frustration).   I needed that!

Because of my injury, I deal with a lot of frustration on a daily basis.  I continue to have many problem solving skills and difficulties with new learning, getting things in sequence and difficulties with organization in my brain and in my environment, to name a few.  Technology often stands in my way rather than helps me.   I routinely have to compensate around my frustrations and I have to work at not letting the frustration I experience get to me.   Sometimes I am more successful than others.

When I have a bad week, my problem solving skills decline.    And thus my frustration can increase, sometimes to unmanageable levels.

And all that can happen with no help from events outside of me.   When events outside my control create increased frustration for me, I have to work even harder to stay as calm and even-keeled as I can.  I learned in formal outpatient rehabilitation that my problem-solving is actually better when I am calm, so finding calm and staying even-keeled behooves me.

To make the frustration I have been dealing with in the past 10 days (from outside) more concrete, I am going to share some of  the details.

My cell phone service has been horrible for the last two weeks.   My service has been dropping calls like crazy.  And, I have horrible reception right now, even when the calls aren’t being dropped.

At first, I compensated by stopping making calls.  But then, I felt like a prisoner to my phone.    When I started using the phone again, I would start the call by telling the other person that my reception was terrible and to please bear with me, as there was nothing I could do about it right now.

Alittle background here about the importance of my phone to me.     To solve problems, I need to use my phone to call others for support and friendship and to get suggestions from others that I cannot think of by myself. I need to call repair people for problems in my home.   And I need to be able to understand what others say, which is sometimes difficult for me with clear reception because of the lingering subtleties of my injury.   Understanding others is much harder when the phone reception is bad or is cutting in and out.  Plus having to redial the phone and figure out where I was in the process, is just trying to my patience.

I called my cell phone service  7 days ago and complained and listened to them for 30 minutes.   My husband had been complaining for me before then.  But, I realized I really needed to do it for myself because the bad service was so annoying to me that I knew it would make me feel better to talk with them directly.

After my call with them, I lost my voice to larynigitis.  I couldn’t talk for 3 days!   So things got worse before they got better.

I could go on and on about my increased frustrations during the time I couldn’t talk.     However, I really want to talk about the solution.

Once I got my voice back, I called Mark Palmer www.realistichope.com for a conversation we had scheduled before I lost my voice.   I had been introduced to Mark through my volunteer work at the Brain Injury Association of America in the Washington DC area years ago.   I wanted to reconnect with him this week as he had presented the first Webinair by a survivor through a new Webinair series hosted by the Brain Injury Association of America.    The series is funded by the Butch Alterman Fund and seeks to address top issues of survivors and their family members.

I had missed the Webinair when it aired in December and I hope to watch it when its posted electronically, soon.    The title was Realistic Hope.    I wanted to talk with Mark about how it went for him and what he learned from doing it.

What was the inspiration that Mark gave me in our conversation?

First, he helped me work around my technology issues for the conversation!   Mark made his career in technology after a severe brain injury changed his life in his early teens.

So he patiently advised me as to how to use my skype connection so that we could avoid the phone issues.    He was so patient, and gave me time to find my skype password and walk me through the skype website which came up on a screen where I couldn’t find a place to type in his skype information.  His patience alone was tremendous and the exact mix of attention and space that I needed to problem-solve.

Together (and with both of us showing each other tremendous patience) we kept looking for a different compensation when my first attempt on my computer didn’t work.   Since he was on an Apple machine, he couldn’t walk me through what my machine was showing.     I realized that I also had an apple machine, an Ipad I am learning to use, so when Plan A with my computer  didn’t work, we moved to Plan B on the Ipad.   And all of a sudden, we were connected!!!!  Bingo.

I want to say more about Mark’s work after I have seen his Webinair.

But for now, I want to tell you what has stayed with me the most from his conversation:

1) Mark thinks in a very holistic way about problems.  It was inspiring listening to his thinking.  When you think outside the box, you come to conclusions that solve problems in a bigger picture way.

2) Mark’s outlook is amazing.    Mark said that he’s been 30 years with out seizures.  He said that if the people who helped and supported him had given up on helping him to be seizure-free during the 20 years it took for him to be seizure-free, they would have robbed him of those 30 years.    That is quite an outlook!

3) Mark’s story about the way he looks at his journey to be seizure-free reminded me of the gift that finally being able to drive after 15 years of hard work on re-developing my driving skills gives me.   Many people supported me with a lot of baby steps that I had to master in order to be able to drive again.   And if they hadn’t done that, I would not be experiencing that gift everyday when I drive my son to school or run errands.

Mark put me back in touch with a feeling that I have when I am in the inspired place–that I have had a lot of recovery from my brain injury.

And one of the gifts of that recovery, when I remember it, is that if I can get better from brain injury, I can do anything!  I have been greatly challenged, and I have risen to the occasion.  That is a great feeling.

The day after I talked with Mark, I called my cell phone carrier again.

This time, I successfully argued for a cell phone extender — a piece of technology that will improve my cell phone reception in my house while towers around me are upgraded.   Thank you Mark!

To all the survivors who have modeled for me better ways of doing things and who have inspired me with their actions, thanks a million!

 

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Optimizing my brain functioning — my new monitor!

aforrest Leave a comment

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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The Power of Reflection — revisited, at a deeper level

aforrest Leave a comment

I love it when I am in a reflective place where I am appreciating how my life has improved during the year.

I was thinking about that improvement this morning.   I was heading out for my walk and I was cued by seeing my sun block so that I could use it BEFORE I started my walk. I have consciously looked for, and found, a place to put my sun block so that I see it on my way out the door. When  I see it, I am reminded to put it on.  The “cue” — seeing my sun block on my way out the door — means that I can get the sequence right (put sun block on before walk). The cue frees me up so that I am more likely to get sun block on either because I remember to do so (sometimes) or because I am cued to remember it. Either way, my life is better with the sun block on for my walk, and because I am training my brain about the sequence.

As I was putting on the sunblock this morning, I remembered what the pattern was like on my almost-daily walk in Arlington, Virginia before we moved to Austin, Texas. I would often have already passed by several houses when I realized I did not have sun block on, if I realized it at all. So I noticed that and tried to improve upon that. And over the years, I have. In Texas, wearing sun block is much more important than in Virginia because the sun is so much more intense here.   And I have made alot of progress on getting it on.

Like I have said, small things make big differences in my world.

I realized the other day after I posted on reflecting about my “rehab” accomplishments, that I had a lot more to say about the improvements that I have had this year in the continued “re-training” my brain department.

Why do I need to re-train my brain still? Because I have persistent symptoms from my concussion/mild traumatic brain injury that I am still working a way on and, in working on them, I am improving my quality of life and functionality. The kinds of persistent symptoms that I am working on are mostly in the executive functioning category. What is executive functioning? My non-technical definition of executive functioning is the more advanced brain functions like getting a process in sequence, getting things done in a certain time, determining what activity has priority over the others and accomplishing it, getting more than one thing to happen by a certain time and taking in new information into the process.  I will have to look up the more technical definition in a future post, but that is the working definition that I remember from my formal rehabilitation.

What I have learned is that the more often I can combine rewiring activities with another activity that I am already doing during my day, the better.  That way, I don’t have to find separate, extra time in my day to do the rewiring work.   Since I have to do the activity anyway, if I can work on rewiring at the same time,  then the rewiring work will be done on a regular basis. And the more I practice, the more I train my brain with the new habit.

The trick is that I often have to be conscious that I am doing a training activity — and that means doing it more purposefully to imprint it on my brain.   Doing an activity more purposely, sometimes can mean doing it slower.    I remind myself that I am training my brain the way I want it to work in the future and that slower will make it better in the long run.  (No multi-tasking allowed!)

Raising my son is the best example of a daily life activity that has also pushed me along in my rewiring.    As a mom, I have to think ahead — so that exercises my planning skills.   I have to think ahead about how to direct him and focus him on what he needs to know about and learn.   And I have to look for effective ways to encourage behaviors in him that are good for him and away from behaviors that are unsafe or are not age appropriate or that I don’t want to encourage.

My doctors have been very encouraging that I am at the point in my recovery where taking care of a child is beneficial to me.    There definitely was a long period where I couldn’t even take care of myself, much less another.  I have had a lot of help on learning about child raising and have been taught how to build a support system around doing it.   But my point in this blog post is that raising my child is rewiring that is mostly fun to do and that I am able to take advantage of during my day.

My son is 5 years old and thriving in his preschool class.   He’s doing well, loves school and loves his friends and family.    His progress is amazing.   And when I reflect on my accomplishments this year in my rewiring, I can count the progress in his growth and development as rewiring work and progress for me also.

If you would like to read ahead about motherhood and my injury:

www.brainline.org/content/2011/10/bringing-up-baby_pageall.html

 

 

 

 

 

 

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