Helping others has led to my participation in developing guidelines for symptoms from concussion/mTBI

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Starting last October,  I participated with other experts on concussion/mild traumatic brain injury on a consensus panel to update guidelines for Health Professionals about how to treat adult patients with short-term symptoms and persistent symptoms after concussion/mild traumatic brain injury.

It feels great to be contributing to guidelines that will improve care for patients with mTBI/concussion.   It gives me hope for the future.  And it makes my difficult experience with finding appropriate resources for recovery alittle easier knowing that I can use my knowledge and experince to help others.   I worked on the first edition of the guidelines, starting four years ago, and and now the update or second edition.

Ontario Neurotrauma Foundation (ONF) in Canada has sponsored this work.   As far as I know, these are the only systematically developed guidelines (in the world) for general Health Professionals on how to treat persistent symptoms for adult civilians.  It also contains information about how to treat symptoms right after they occur that have been developed in Australia, New Zealand, Canada and the U.S.

The second edition of the guidelines were published in September 2013 and can be found here:

http://onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

The guidelines are written for Health Professionals, but you can read them too.

As a PhD, I am trained to understand the importance of high quality research versus other evidence and thus I am able to use some of my pre-injury skills for this work.   As a patient I am able to contribute from my experience and from the many mistakes and pitfalls that I have either experienced myself or heard about from other survivors and their families that I have met in my journey.

Guidelines

Here are five reasons why these guidelines are important for patients (consumers) and their families and friends.

1) The guidelines take concussion/mild TBI seriously.

2) They are a compilation of current knowledge about what to do in the short term after a concussion for civilians.  In other words, they educate and provide guidance to Doctors about how to take symptoms seriously.

3) The existence of guidelines about persistent symptoms from concussion/mTBI is acknowledgement that some patients (consumers) have persistent symptoms and that appropriate treatment can be helpful to these patients.  Not everyone gets better from concussion immediately and those who don’t get better need treatment.

4) They are a compilation of current knowledge about what to do for patients with persistent symptoms.

5) The guidelines can be used in any country although they are written for the Canadian Health Care System.  They can also serve as a model for the development of guidelines in every country.

The guidelines were just presented last week at the American College of Rehabilitation Medicine annual conference in Orlando, Florida.   Hopefully we will be hearing more about them.    I have alot more to say about them in the next posts.

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

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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.

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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The importance of cognitive rest

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I have learned alot about cognitive rest and its importance in re-finding balance, and re-building after my injury.    I was reminded of it last week when I noticed that I was getting more and more out of balance in my life.  I realized I needed to change direction and get my life going towards re-finding balance.

There are many names for good rest — brain rest, cognitive rest, power naps, downtime, REM sleep.  My friend has coined the terms “aggressive rest therapy” and “emergency nap”.

The role of cognitive rest is so critical.

Several years after my accident, I benefited from the guidance of a neuropsychologist who taught me my compensatory strategies so I wouldn’t get too tired–or what my friend and I call, “too tired to sleep”.    The neuropsychologist  taught me to do daily life activities then rest, then do daily life activities then rest, and she thought I needed 3 rests a day.   She called this ” pulsing”.  I learned that I could actually get much more done in my day if I rested my brain frequently.

My vision therapy Doctor  taught me to stop doing or limit the things that were fatiguing to my eye-brain connection.   I had to learn what these activities that caused the fatigue were.  They were often things that I could have easily done before my injury like walking more than 20 minutes.   So, it took me years to learn when I was (unintentionally) over-tiring myself and to stop doing them.

Later, a speech therapist gave me rules like “no computer after 7 pm at night”.  ( This was helpful when I was finally able to be back on the computer with the help of assistive technology).   She also taught me to limit my time on the computer for only 20 minutes a time.

And my speech therapist taught me to stop all activities BEFORE my symptoms (irritability, intense fatigue, feeling overwhelmed and increased confusion) began.   It was more efficient to stop ahead of time then to wait til the onset or overdoing it came.  Because the onset was often delayed, this self-awareness about when to stop was really hard to  to master and took me years.

But I have gotten ahead of myself.

Last week, when I realized I was out of balance, I was able to use the cue to begin the process of putting into place my compensatory strategies to help me.   Thursday afternoon, I thought I would take one last look at my blog before I published it.    Turns out our cable service went down.    So I couldn’t publish the blog post from my computer.   Rather than being frustrated, I realized the best thing for me was to seize the moment and let myself take a “cognitive rest”  for the entire time that my sitter was here.

Boy, did that help me!   Sometimes, it feels like too much luxury to stop to get brain rest.  Or, like Thursday, that I don’t have time to get cognitive rest.

What I have learned through practice  is that when my internal voices are telling me that I don’t have time, is usually when I need downtime the most!    As an overachiever, learning to “hold back my inner over-achiever” has been one of the hardest things about my recovery.   I have learned for my own recovery, I  need to err on the side of more rest rather than erring on the side of less rest.

And, as it turned out, getting downtime Thursday was indeed the best thing I could have done for myself.   It  helped me to be alittle more calm and it helped me regain more balance.  I find cognitive rest helps me make my life tolerable and allows me to keep going.   My cognition is always better afterwards.

Do you use cognitive rest to help you regain balance and help in your recovery and rewiring?   How does it work for you?

 

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practice, practice, practice and finding and re-finding balance

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Last week, I talked about recognizing that something I was doing was creating sleep issues for me and trying to act quickly to nip that in the bud before it got worse.   I recognized that too much time on the computer was causing sleep difficulties and I scaled back work on the computer and resolved that.

Because I took these steps, I thought my life was moving toward better balance.

This weekend, I recognized (upon reflection) that I was getting another sign that my life was moving further out of balance.   Not because of sleep issues but for other reasons.

So I wanted to write about how hard I consciously have to work on finding and re-finding balance for my life to work as best it can.

Finding enough balance in one’s life is an issue for everyone.    What I realize now, is that my injury created a tremendous imbalance in my life.    My health and independence went out of balance, my career and my finances went out of balance. And the things that motivated and interested me and gave me joy in my life — my research, my work, my volleyball and my coaching kids soccer, as well as seeing my friends and family and having fun — went out of balance.    It took me years and years to reach some semblance of balance around this and recreate my life.    (More on this later …)

As I have recovered and re-wired, I have learned that one of the most important compensatory strategies that I have both practiced alot and still need to practice  is how to recognize the signs when my life is betting out of  balance before it gets too out of balance and falls apart.

In some ways, recognizing that my life is getting further out of balance is the hardest part.   Once I can recognize it, I can enlist help or follow steps I have learned to get it back closer to balance.   Often, things get out of balance and are headed further out of balance, long before I catch on.  Or, like this situation, I rectify one thing, and think I am getting things back in balance only to find out that there was more compensation I needed to make to get things in balance.

So here was the wake up call that I got this week.   I was asked to be the family member to pick my sister up at the airport since noone else could.    Since others have had to pick me up for so long, (and since I thought my life was getting back in balance), I was happy to oblige and practice being comfortable with driving to the airport.   Everything was going okay or so I thought.

Then, I parked in the cell phone lot to wait for my sister to get her baggage and be ready.   I must have forgotten to take the key out of the ignition.  So while I sat in the car waiting, I was unintentionally draining my battery.    When I tried to start my car again, it wouldn’t start.   So there I was at the airport unable to pick her up.

This whole process of draining one’s battery could happen to anyone.

Tire_Swing

I have learned from experience (draining my battery unintentionally has happened to me before)  that when it happens, it’s a sign.  Note to self!   It means that things are getting further out of balance.   When I have taken on too much unintentionally, I forget to take the key out of the ignition.   When I am forgetful about the things I know I need to be conscious of, its a sign my brain is overloaded by my life.

Let me explain further.   As part of my rehab on driving, I have had to re-learn all the procedures one needs to know how to drive.  These things are automatic to most people as adults such as putting the key in the ignition before I put the car in gear and the reverse, putting the car in gear before taking the key out when I am finished.  They are no longer automatic to me after my injury although with alot of rehab and alot of practice, many of these procedures are more automatic now.   Like I don’t have to consciously think to put the kay into the car before I put the car in gear–thats automatic again.    But I still have to consciously remember to put the car in gear when I am done, and to take the key out or the ignition.

Needing to get my life back in to balance happens alot.   So I get alot of practice doing it.    My life works better– I am more functional and my life is alittle easier to live and my mood is easier to manage–when I do.

Do you have a difficult time maintaining balance also?

Do you have experiences that you can recognize are signs that you need to pay attention to finding balance again?

 

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my blog is a work in progress

aforrest 1 Comment

I view this blog as a work in progress.   I wanted to let you know that.   I am practicing being patient with it.

I find practicing being patient to be one of the hardest skills.   I want to race ahead and to do so much more with the website and with the blog.   I have alot to say about what I have learned about the brain from developing my awareness about my own brain, from listening to media, from attending conferences, from my advocacy and from talking to professionals, survivors and their families.  And I want to talk about what I have learned here!

I have a lot of limitations to work around in writing the blog, however.   I have learned that my day goes best when I respect my limitations.    When I don’t respect my limitations, my life literally falls apart.  I have unintentionally tried that many times.   It doesn’t work.

What are some of my limitations?    Like anyone else, putting up a website and writing a blog would be a new project and there is alot of new learning that goes on with trying to master something new.

What’s different for me is that my new learning happens at a slowed rate — much slower than I was used to it happening.  I have learned alot of awareness and acceptance of my learning curve.   So when I take on things knowing that it will take   “awhile” to get the hang of it, it goes much better.

Since I remember that I used to learn things much more quickly, I have to work hard not to get frustrated in doing something new.   Whatever it would have taken before, it takes alot longer now.   I have to set my expectations realistically and allow myself more time.  I have to let my new slower learning curve be okay.  It is what it is.

And for me, the computer is no longer my friend.    Working on the computer and focusing my cognition while typing takes a great deal more energy for me than you would ever think.   So I have to limit the amount of time I can spend working on the computer.   And if I don’t, I won’t have sufficient energy for all the other tasks I need to do in the day to care for my son and contribute to keeping my family’ s life together.  I rely heavily on the support systems that my husband and I have built to help us but I also need to contribute what I can.

And, I only write content for the blog.    Its my dear husband, Michael, who understands how to add the picture to the blog and who understands how the blog does or doesn’t work.   He’s got alot on his plate with work and helping me out with household and day-to-day stuff.   He pitches in with the blog when he can.   He tells me that there are technical things that he still needs to fix about the blog.   Since I cannot do them myself, I need to find patience to be happy with them as they are until he can find time to get to them.

Construction

These are only some of the limitations I face in working on the blog.     But I wanted to put them out there.  I have found letting people know my limitations is useful for helping others learn and develop awareness and understanding about what my abilities actually are right now.   I am hoping to find more support around developing my blog as I go along.

So, my blog is a work in progress.

I hope you will be patient with it too!

An end note:  After I wrote my draft blog for this week a couple of days ago, I had difficulty getting to sleep.   Not being able to get to sleep is usually the sign that I have spent too much intense-cognitive time on the computer.    So today I am going to try to stay off the computer other than to proofread and post.    Yesterday I got my sleep patterns back to normal.   That’s crucial for me–I have to nip increased sleep issues in the bud.   Today, I want to keep them back  at the place that’s normal for me and enjoy my more restful sleep tonight.

 

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practice, practice, practice and sharing my story

aforrest Leave a comment

It feels great to be reflecting on the life goals I have attained following my injury.    It reminds me how far I have come.

It feels great to finding my voice at a new and deeper level in writing this blog.

I can feel my voice coming from my core.    It feels great.

With our move to Austin, I have not yet been regularly giving speeches about my story as I was in the Washington DC area.   And writing my blog reminds me how good it felt to be helping others and raising awareness about persistent symptoms from concussion/mild traumatic brain injury (and brain injury) by sharing my story.

So what are the big steps that I have had in learning how to tell my story?     As with relearning to drive, I have experienced many twists and turns and much frustration.   To put it lightly.     But here are the big steps.

First, I had to get to appropriate rehabilitation.

Second, the speech therapist worked beside me to show me the level of my skills that I actually had and to develop my awareness about them.    For example, I had to relearn what the topic sentence was in a paragraph and how to write a topic sentence.   These were skills I first learned in the third grade.

Then, I had to learn to write my story as part of my rehabilitation and give it as a speech.

Fourth, I had to practice and practice and practice writing my story (using the template from that first speech) and practice my public speaking.

Fifth, I learned how to write different aspects of my story (without the template) and eventually learned to give my speech without having to read it.

These steps not only helped me learn to tell my story.  Telling my story helped me be able to talk with different media to tell my story to them and telling my story helped me with advocacy.

More on all these steps in the posts to come.   But, if you want to skip ahead and read my story as told  in The Washingtonian Magazine here is the link:

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

 

 

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Practice, practice, practice and driving

aforrest 1 Comment

I have gotten alot of results from my habit of practice, practice, practice.

Recently I got my Drivers License!

For years, I had to rely on others for rides, taking cabs, taking the bus, and walking.   But, now, I am driving.

Its a long story with many twists and much frustration.    I kept plugging away at it with lots of help, and now, I am driving by myself.   I will come back and talk about all the baby steps in another post.

For now, I want to say there were 5 big steps:

First, I had to find appropriate rehabilitation.

Then I had to do alot of rehabilitation.

Then I had to practice to take the written test again (because my license expired).

Then I had to practice behind the wheel.

And then, when I was ready, I took the behind the wheel test.

Once I got my learner’s permit and could sit in the drivers seat, I practiced, when I could, over a span of 7 or 8 years.

Who knew that there were so many skills to driving?  I certainly didn’t.

When I got my license as a teen, I practiced alot too.   At that time, I had no idea of what the skills were that I was practicing in order to learn to drive on my own.   I just practiced.

What I know now is that driving takes a lot of cognitive skills — like memory, concentration, attention, and problem solving skills — as well as visual skills and balance skills that I had to consciously re-learn.

I have these skills again!   I can drive independently.

When I was a teen and got my license I wanted to drive somewhere far away.

When I got my license this time, I just wanted to be able to drive to a convenience store to run an errand!

In both cases, practice led to more independence.  Yahoo!

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I feel hopeful when I practice, practice, practice

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I feel hopeful when I practice, practice, practice.

I do.

I wanted to repeat that I feel hopeful when I practice, practice, practice because it is so important to my life.

I didn’t want you to read it so quickly that you missed it.

Just doing this habit makes me hopeful.

I feel hopeful because I know that practice, practice, practice will bring me results.

I do not know when it will bring me results.

What I have learned is that following a habit that will eventually give me results is better than not doing so.

I would rather head down the path of practice, practice, practice to change how my brain works eventually,  than to do nothing differently.

And what I have learned in life is that those are my choices.   Of those two alternatives, I would rather choose the the one that may make tomorrow better than today than the one that won’t.

 

I suppose my habit of practice, practice, practice is a little like planting seeds and being hopeful that they will take root and grow for the future.

 

 

 

 

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Hi, Hello, Welcome!

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Wow.   I am starting the blog today.   Hi, Hello, and Welcome!

I have been practicing writing blog posts this summer, hoping that one day this day would come.    And here it is, mid-September.   And I am publishing my first post.

Practice and practice and practice is the habit that I have learned to do to help my brain learn how to do something that I haven’t done before.

Well, how have I practiced?   This summer I went to the BlogHer Food conference here in Austin.   I love food and I was thrilled that a Blogher conference was held here.  It was a great opportunity to learn about blogging.  I asked Food bloggers about how they started their blogs, how they prepared, and where their blogs have taken them.  And I ate yummy food with them.

I have also been pondering questions from friends about what I am trying to do with my blog and talking with friends about the blogs they read and what they like about them.    And I have been writing down sample posts on paper.   I have even gotten to the point where I find myself composing a sample post in my head while I am out walking.  Amazing!

And you might say that,  long before this summer,  I started practicing.    Truth be told, I have been practicing for years and years by learning (re-learning) how to write and eventually speak publicly about my story.    All these many baby steps helped me learn how to tell my story so that reporters could understand and write my story.  Now its time to take the next step forward and write and share my story on this blog and hear your inspiring stories.

Welcome and thank you!

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