awareness

“Striking a Nerve: TBI Up Close and Personal” from MedPage

aforrest Leave a comment

In January, I was very excited to see a link to an interesting article that was posted on the American College of Rehabilitation Medicine’s Brain Injury Interdisciplinary Special Interest Group Linked-In page.

The article was called, “Striking a Nerve: TBI Up Close and Personal” and it was from a web publication called MedPage.  I have been thinking about this article for months.

The article was a doctor’s answers to a Medpage series where they asked doctors for their views on the state of medicine.

One thing to tell you about me is that because I am still learning my way around the computer again and because I use the computer sparingly in order to minimize the energy drain that using the computer causes me,  I am not the person that clicks on links very often.

However, I felt drawn to open this link to the Medpage blog.   I was glad I opened it.   On reading the article, I was thrilled, awed, inspired by the story and inspired by the possibilities in the story.   Wow!

Just by way of alittle background, I had become a member of the American College of Rehabilitation Medicine (ACRM) about 9 years ago in order to learn about brain injury recovery and to get the the latest expert knowledge to help my recovery.   I also joined ACRM because I wanted to retrain my brain to think like a PhD again and the best way I knew to do that was to surround myself with other PhDs and learn from that exposure.

So finding the MedPage article was exactly the sort of thing I had joined ACRM to be informed about.

Dr Romanas, the author of the article, felt very strongly about the need to improve medical education for doctors to improve their abilities to diagnose and treat persistent symptoms after brain injury.

Not only was the writer of the article a practicing MD and a PhD, but she was also someone who had overcome persistent symptoms following a car accident when she was 16, to become that well educated, pursue her career as a pathologist and raise her family.

Her article was very well written, and so raw, that I found reading it very compelling.

In addition, although her injury happened at age 16, her recent improvements in brain functioning and her ability to function in her life and her work that resulted from the cognitive therapy program she did recently happened roughly 30 odd years after her injury.

Since I am about 16 years out from my accident, the article lets me know, through anecdotal evidence anyway, that there will continue to be possibilities ahead for my recovery also.   I presumed that I would continue to experience neuroplasticity, but its always good to have a model ahead of me and concrete information about how she did it!

I am inspired by what Dr Romanas was able to accomplish while overcoming siginificant symptoms.  Many of us could not accomplish what she has accomplished with our brain’s working just fine.

I am also always inspired to meet others (and now their names!) of others who have had functional recovery after 2 years post-injury like me.

Here’s the article:

http://www.medpagetoday.com/Neurology/HeadTrauma/44084

I have a lot more to say about this article, and my subsequent talk with Dr Romanas.  I will save it for another blog.

Have you had recovery after 2 years?   I would love to hear more stories of people’s recovery after 2 years post-injury.

Why two years?  Because I was told by my doctors that they will never get better or recover further after 2 years.   And I hear from many, any others that they are told either one or two years also.

In fact, I would love to hear thousands and thousands of  stories of people’s recoveries after the 2 year mark!

That would be music to my ears to counteract all the times I heard that I couldn’t get better after 2 years.

 

Read More - “Striking a Nerve: TBI Up Close and Personal” from MedPage

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

aforrest Leave a comment

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

I Want my Brain Back Forward!

aforrest 1 Comment

I am feeling really inspired after attending some sessions at SXSW Interactive Festival here in Austin this week.

I did a mentor session with Nancy Currie, a life coach, from Toronto.   My intuition told me to pick a session with her.

I told her that the title and magazine article from The Washingtonian is still really meaningful to so many people.

It has helped them validate their experiences and know that they are not alone.

It was published in 2007 and still helps people 7 years later.

www.washingtonian.com/articles/health/i-wanted-my-brain-back/

I am so appreciative to Sherri Dalphonse, the editor who did a superb job framing the title and writing the article.

As my own recovery has moved forward, so has my advocacy.

And as my advocacy for people with brain injury has moved forward,  I have realized that I don’t really want my brain back.

Yes, you read that right.

Like everyone else, I want my brain to be moving forward.

That is to say, when I lost my brain (as I knew it) after the concussion during my car accident in 1997, I began to think I would never have my brain again.

Especially because I did NOT get to appropriate rehabilitation treatments for many years.

What I have come to realize is that my brain couldn’t move forward from that trauma without all the appropriate rehabilitation that professionals at the top of the brain injury field already knew about, but that I did not get to in Washington DC for reasons I still do not completely understand.

Eventually, over many many years, I found the appropriate treatments in a very piecemeal fashion.  I also had to discover a lot about recovery on my own.

Slowly I learned to describe what was wrong with me better and eventually how to advocate better for the treatments I needed.

My early treatments of vision therapy may have been some part of the reason why I could begin to describe what was wrong better.   None of the doctors I went to at the time understood or appreciated the value of the vision therapy.

Through a lot of struggle and hard work I eventually found health professionals who understood what was wrong including some of the doctors I was already seeing.

I thought it was me who had such a hard time finding the right professionals who could help me.

What I have learned in my advocacy is that it happens all over the U.S. (and most other countries).

It happens all the time, in 2014, that people with concussions who need help are not getting the treatment they need to get better.

If people with concussion/mild traumatic brain injury cannot get to the right treatments, they cannot get back to work!

Years and years after my injury, I understand that just like anyone else, we with brain injuries want our brains to move FORWARD.

And we need help getting our brains and ourselves past the medical trauma to the place our brain’s can cognitively move forward just like every one else’s.

Natalie Currie suggested my motto ought to be “I Want my Brain Back Forward!”     

And that is why I named my blog A Plastic Brain.   Because I wanted to talk about neuroplasticity–the brain’s ability to change and get better.    It was the possibility that my brain could change that gave me HOPE.

And with HOPE, I found my brain could change.

And know I recognize that what those of us with persistent symptoms after concussion really want to know about and experience again is neuroplasticity.   Our brain’s ability to change and learn again.   Many of us can get there if we can just get the appropriate treatments.

I am still learning how to post, so I cannot figure out how to cross out the “Back” in the title that way right now.    I will ask someone about how to do it and update my post when I can.

Have you experienced neuroplasticity in your own life?   Please share your experiences with neuroplasticity after brain injury so that we can get the word out and give hope to others.

Read More - I Want my Brain Back Forward!

Finding good doctors after brain injury takes effort and time

aforrest Leave a comment

We moved to back to Austin 2 and 1/2 years ago.

After 2 1/2 years, I am still putting together my medical team after my persistent symptoms after mild traumatic brain injury/concussion.

The difficulties I have had has surprised me.

I have had to put a medical team together, and the deficits from the injury very much compromise my ability to put one together.

It took me over 10 years in Northern Virginia to put together my medical team.

From putting a medical team together and from my speaking and advocacy work, I know that many doctors are not aware that there can be persistent symptoms after brain injury.

I know alot of the pitfalls of seeking medical care after persistent symptoms.

I also know that my persistent symptoms may get in the way of carrying out the doctors recommendations, so I want to do what I can to make my doctors aware that my symptoms may affect my abilities to follow through on recommendations.   I want to minimize follow through after doctors visits from falling through the cracks due to my deficits.

I can understand that doctors who are not directly involved in the brain injury field may not be trained about persistent symptoms and/or how they may affect my health care.  I know that I may look fine to a new doctor and that may also create a problem to my receiving the health care I need.

I have had alot of media attention about my injury and recovery.   So I always take a nice copy of The Washingtonian Magazine article about my recovery “I Want my Brain Back:… ” as part of the materials I take on my first visit as well as a chronology of my diagnoses and treatment so that I can hand doctors or health professionals a short summary on that.

I also prepared a talk on seeing doctors after brain injury for an educational series.   Debi Gale, a speech and language therapist helped me develop the talk.   The talk was sponsored by Brain Injury Services (BIS) of Northern Virginia to help people understand mild traumatic brain injury issues.  I received case management services at BIS in the ninth year of my recovery from my injury.  (Case management helped me tremendously with obtaining services I needed that I could not have gotten on my own).

So I always take written materials to my medical appointments so that things are written down and I don’t have to remember to say them.

I also try to write down as many questions as I have (which means remembering to do so beforehand and remembering the issues I need to talk with my new doctor about).

I know that I will be distracted in the office and the more I can focus my information and write down my questions before my appointment, the more likely I will get across any issues I need addressed and get the help I need.

I know its very easy — too easy — for me to get out of the doctors office and remember major issues that I did not bring up.

After 2 and 1/2 years here in Austin, I am still putting together my team.

Again, it took over 10 years in Northern Virginia when I had less awareness about my issues.

So I realized this week, that I need to be okay with it taking as long as it needs to take.

Sometimes I find a new doctor that is completely on top of it and I definitely want them to be on my team.  These are often the specialists like the sleep doctor I saw last week.

Sometimes I find a new doctor who is good/great and who is open to either somewhat knowledgeable or open to my issues.   I may need to further educate that professional about how to work with me and my deficits and this can take a while for us to figure out how to work together.

Sometimes I find I cannot work with a doctor or medical professional and that I need to start over again and look for another person in the same discipline whom I think I can work with.

I realized just I don’t have control over how much time the right team will take.    It is what it is.

I have about 3/4s of my team so far and that is a good start.

 

 

 

 

Read More - Finding good doctors after brain injury takes effort and time

Awareness and mild traumatic brain injury/concussion

aforrest Leave a comment

After my mild traumatic brain injury, I was not aware of my injury.

That is an understatement.

When I look backwards, I can see that my lack of awareness about my injury made my interactions with primary care doctor more difficult.  In my speech at the Congressional Briefing in 2011, I used the phrase “unbeknownst to me“ to describe my lack of awareness about my symptoms.

In that speech for Brain Injury Awareness Day, I go on to describe that “unbeknownst to me, I had the following symptoms.  I had a second grade math level, a third grade language skills level, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability.  I couldn’t absorb what I was reading, and I had difficulty with social cues”.

Years later, its amazing to me that I functioned for years with those symptoms (and others).

But, I did.

Why did I have to?

That is a complex question that I still cannot completely answer.

But I want to take a stab at answering it now with years of recovery (and advocacy) under my belt.

In this post, I want to talk about my own lack of awareness of my injury as a factor.

How aware was I of my injury?

Well, I knew something was wrong.

But I thought of myself as an articulate person because I was an articulate person before my injury.

If I had any expectation at all in my mind, my expectation was that whatever was wrong with me was temporary and would go away.

Plus,  I loved my life as it was.

I expected it to continue, as it was.

That is,if I had given it any thought.

I did not give it any thought.

I went to the doctor because I had headaches.

Frankly, I don’t think I would have gone to the doctor on my own.

Luckily for me, my colleagues at work said, I should go to the doctor because I was in a car accident.

They said to me that I had never complained of headaches before and that my headaches could be related to the car accident.

That was logic I did not have on my own.

That might tell you something right there, but it did not register for me.

And I was not the type of person who was going to let a headache get in the way of me living my life!

Looking backwards, I did not have awareness of all that had befallen me.

And unfortunately, neither did those around me.

One of my colleagues recommended a doctor to go to.

My colleague had fractured his skull in a bike accident and his doctor had helped him with his concussion recovery.

I made an appointment to see his doctor.

I went to see the doctor because my colleagues were telling me I should.

I didn’t have a “go-to” primary care doctor who knew me.   I didn’t need to have one.

What that meant was that my new doctor did not know me pre-injury.

If I had been aware of my injury, the outcome of going to a primary care doctor might have been completely different.    We will never know.

But I wasn’t.

Other than the one symptom — the headaches — I am not sure that I had anything else to tell my new doctor about why I came to see him.

From his point of view, I am sure that I looked fine.

Let me repeat that.  

I looked fine.

Looking backward, I can see what a mismatch in terms of expectations and knowledge that my first encounter with my new primary care doctor was.

Looking backwards, I don’t know how aware my doctor was of possible other symptoms of mild traumatic brain injury/concussion at the time.

I was only presenting to him (telling him) that I had one symptom.

That one symptom was all I knew I had at the time.

It was also all I was telling my colleagues because it was all I knew.

The other part of the knowledge mismatch was that I thought my new doctor knew all about what to do for a concussion because he had helped my colleague.

I did not know what a concussion was.  I don’t think I even knew the word then.

But, the most important thing about that is that I thought he did.

My new primary care doctor appropriately told me to proceed with caution which I did.

That meant that I did not start playing volleyball on the sand courts by the Potomac river at the bottom of the Mall (the park where all the Monuments are) in Washington D.C. that week, even though I had been looking forward to the sand volleyball season to start for months.

I don’t remember what he told me about my headaches, but I think he told me to take aspirin, when needed.

I went back to work and I went back to my life.

I believed that I was taking appropriate precaution and that everything would be fine.

Boy, was I wrong.

Looking backwards, I can see that lack of awareness is often a part of the injury, in my case and for many of the people I meet with the injury.

From my vantage point, lack of awareness can stand squarely in the way of getting to appropriate care.

Read More - Awareness and mild traumatic brain injury/concussion

Noticing the energy and hope from my new monitor — and thankful for how far I have come

aforrest Leave a comment

My new monitor is so amazing!   Using it releases energy for me.   I can actually “feel” that my brain is more organized when using it.    And it feels like it takes less cognitive energy for me when I use it.

I was describing to a friend today how exciting using this new monitor makes me feel.   She told me that she notices something similar when she uses her ipad (a bigger screen) rather than her iphone (a smaller screen).  She says she is able to “think” better with her ipad.   I thought that was interesting feedback from someone who is not even trying to compensate around cognitive deficits from a brain injury.    Even she can notice a difference in the size of a screen.

Upgrading computer equipment that makes my day easier or does not take as much energy out of me allows me to do more with my day.

And the feeling that I have when I use the new computer monitor is that it is opening up new horizons for me because I can think better and it takes less energy for me to use.

To me, new horizons mean new possibilities for my functioning and these new possibilities both inspires me and gives me hope for improving the quality of life in the future.

Feeling this new energy also makes me reflect about how far I have come in my recovery about earning how to manage a burst of new energy.

Early on in my recovery, I might stumble upon strategies and activities that would increase my energy and I would think that that energy meant I was “well”.   Yahoo!  Yahoo!   I wanted to be well so badly.

But I wasn’t well, I just had a little more energy.

But erroneously thinking I was “well”,  I would unintentionally overdo it because of the short-term energy and hope I felt.   Sadly, I would exhaust myself without intending to or even knowing that I was.  Often I would become “too tired to sleep” so I wouldn’t be able to sleep.   And when I did get some sleep, I would often be fatigued for days.  Or worse, fall into a downward spiral that I would not know how to get out of.  Difficulty sleeping would lead to poorer cognition and then more difficulty sleeping and ultimately my mood would sink.

I had not learned important skills like acceptance about my injury and I had not learned awareness about my injury.    These are critical skills for recovery.   When I finally was referred to speech and language therapy, roughly 3 years after my accident,  I learned acceptance and more awareness.  And I learned about how to manage my injury better so that I could be more functional.  I learned to pay attention to my long term recovery.

As I write this, I realize I have come along way!

After years of increased acceptance and awareness and practice, I have learned to notice the increased energy and let it inspire me.   I have learned to work with the energy to help me improve slowly and easily over a longer period.

And, I have also learned not to get fooled by it.

Read More - Noticing the energy and hope from my new monitor — and thankful for how far I have come

Why guidelines for treatment after concussion/mild traumatic brain injury are so important to me

aforrest Leave a comment

Back to guidelines for concussion/mild traumatic brain injury this morning.

I have been thinking about what is the most important thing to me personally as a survivor about the updated Guidelines for Concussion/Mild Traumatic Brain Injury and Persistent Symptoms developed by the Ontario Neurotrauma Foundation (ONF).   I introduced the guidelines in my blog a couple of weeks ago.    They are the first guidelines for the treatment of civilian adults with persistent symptoms in the world.

They have been updated recently to include the latest research and clinical knowledge.   I worked with a group of other experts on these, including several experts from the U.S. and Australia as well as experts from Canada.

I know that the ONF guidelines may be difficult to read and understand since they are written for Health Professionals.   So I want to talk about what they mean to me and explain them in a way that can be understood for people with concussion and mild traumatic brain injury and those who love them.   Here’s the link to the guidelines posted on the ONF website: www.onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

Before I go further, I have to say alittle about my ability to prioritize what the most important thing about the guidelines is to me.   Prioritizing is definitely not my strong -suit post-injury.   In fact, what I have come to learn is that prioritization requires some higher level executive functioning skills that I am still consciously working on to improve.

I will say though that my ability to prioritize has gotten better with practice.   In fact, I remember that people would ask me what’s the most important thing  about this or that for you?   And it would stump me.   I couldn’t answer, especially in the time that they expected me to answer it.    I learned to compensate by learning to ask — “Could you give me a yes or no question?”

Later, I learned to try to say it with a little humor — “Could you give me an easier question for less money?”

Practice in awareness has also helped me recognize that even without my challenges in prioritizing, it might be difficult figuring out the most important thing about the concussion/mild traumatic brain injury guidelines.  I say that because there are many important parts of the ONF guidelines that affect me as a survivor very personally.    And,  I know that many of the parts are important to other survivors because I have had many conversations with survivors and their loved ones who have had big difficulties finding the help they need after concussion/mild traumatic brain injury.  And the guidelines address many of the questions that I and others have taken weeks, months or years trying to resolve  for ourselves.

As I sat down to write this blog this morning, I realize that  the first thing I really need to explain is why I think Guidelines for Doctors and Health Professionals for treating patients with concussion/mild traumatic brain injury are helpful to survivors and their families and why I would like to see them for every country.   Then I will talk about specifics in the ONF guidelines.   I think they could be used as a basis (or jumping off point) for the development of guidelines in other countries.

Guidelines are important because, quite simply, many people with concussion are (still) not getting the best advice on appropriate treatment after concussion/mild traumatic brain injury.   So, again quite simply, better information to Health Professionals will lead to better outcomes for people with concussions/mild traumatic brain injuries.

 

 

Read More - Why guidelines for treatment after concussion/mild traumatic brain injury are so important to me

Helping others by providing the information that I wished I had gotten when I had my injury

aforrest Leave a comment
I had written a draft post earlier this week about what I would have wanted to know after my injury that I was struggling with.  Then some things came up that grabbed my attention.  It occurred to me this morning that perhaps the best thing I could do was let that draft post sit and eventually it will come to me how to say it.
I wanted to post the following statement that a new friend wrote about me for my website because it introduces my advocacy well.  In fact helping others with their journey to recovery, one-on-one, has taught me alot about what people need to hear following a concussion.
Here’s what my friend wrote:
“I first met Anne several years ago when she moved back to Austin and joined
the church where I am a member.  Anne is smart and outgoing and she became
an instant friend.  When I learned more of Anne’s story, I was even more amazed
by who she is as a person.  Several months ago, our nephew had a serious closed
brain injury.  Anne was one of the first people I called.  She was a wealth of good
information and she shared numerous helpful resources.  However, what I most
appreciated about our conversation that night were her encouraging words and
positive outlook and her emphasis on hope.  Our nephew thankfully is well on the
way to a full recovery.  I am grateful for Anne’s friendship;and I am especially thankful
for her continued sharing of her gifts and experiences researching and working with closed brain injury patients.”
                                                –  Martha Richardson
Martha had called me because her nephew had had a concussion during a bike accident.  She told me that the family was concerned by what they had heard from the MD whom they saw.   They heard that there was a 50/50 chance that their nephew might be permanently disabled by the concussion after two years.   I was hearing what had been said third hand. So I don’t know what was actually said.   I do know what they heard and how much it concerned them.
And, I knew that I wasn’t hearing about any recommended treatment.    In listening to survivors and family, I know that its often missing.
When I probed about it,  I heard that the patient and family hadn’t been told about what  treatment would be helpful NOW to improve the odds that the patient would get better and wouldn’t be disabled two years from now.
I know firsthand the importance of early treatment for concussion.   I didn’t get what I needed early on.   I will always wish I had.     So I gave advice to my friend based on my experience.   I suggested to her that the family might want to get a second opinion with one of the doctors and/or programs that have helped me here in Austin.
It makes me feel good to hear that my friend’s  loved one is “well on his way to recovery” having followed my advice.
And, there are two other resources that I always tell people they should consider further for information:
The information line and website at the Brain Injury Association of America:
1-800-444-6443,
The second one is a book call “The Brain That Changes Itself”   By Norman Doidge.  This is a tremendous book on neuroplasticity our brain’s ability to rewire and grow.

Read More - Helping others by providing the information that I wished I had gotten when I had my injury