Health

My proposal for a panel at SXSW Festival

aforrest Leave a comment

While I have been trying to get cognitive rest and rest and trying to get better from my setback, my dear husband, Michael, has put together a proposal for a panel at SXSW festival.  (If you are not familiar with SXSW, its a local festival here in Austin and I have more info about it below.)

This week, I have been helping send that out to get votes for my submission.  Its been an interesting week of trying to minimize my computer use to help me get better and at the same time connect with others through my husband’s online mailings.  I have managed it pretty well by only being on the computer for 20 minutes at a time and then coming back to it again later after cognitive rest and doing that off and on during the day.

I have found that the small iphone screen is actually easier for me to get feedback than my wide screen monitor right now, so I have taken advantage of that learning too.

Here’s my request for help to be selected for SXSW Festival and info on my topic.

The voting stops on Sept 5, but anyone can access the first link to see what I am proposing and background info.  I think my husband did a great job with this!

Please vote (voting instructions detailed below)  if you like it by Sept 5.

Otherwise, check out the panel description (by clicking the link posted below) and give me feedback about my panel on my blog!

I will post it on the blog if I am selected to do the panel.

Help Me Get Selected For SXSW Festival!

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I need your vote!

I have submitted a panel for SXSW Festival about concussion and the brain.

Your vote for my panel will help me get selected to present at the Festival.

It’s a very competitive process. There are 3000 panels submitted this year and only “a small percentage” are accepted.

Please take 5 minute to register and vote to help me.

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

Thank you!

Here are the details:
Some of you are familiar with the SXSW Interactive Festival already.

SXSW stands for South by SouthWest and the Interactive part is the fastest growing part of the festival. Interactive is the technology part (interactive=different kinds of media).

SXSW is an international festival and a global audience comes to Austin in March to hear speakers and see demonstrations.

Festival participants are interested in all kinds of subjects and how they can be improved through technological tools.

SXSW is a pretty amazing concept and the Interactive part has gotten a lot of media attention in the past years.

I have proposed a panel called:
Welcome to Your New Brain: Lessons from Concussion.

At this panel, I will talk about the learning I have had to understand how my brain functions, how my brain changes over time (neuroplasticity) and how to overcome cognitive deficits and diversity.

The lessons I learned and tools I use are useful even for those without an injury. In fact, I wish I had had them before my injury.

Here’s the link for the full text of my panel including supporting info like my cameo on NBC News and The Washingtonian article:
http://panelpicker.sxsw.com/vote/41233

Voting Instructions
So here is how you vote for me:

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

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

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

Anne

Read More - My proposal for a panel at SXSW Festival

And now a summer cold

aforrest Leave a comment

I have been writing about recovering from a setback.   The positive side of this setback is that I have many tools from life experience after concussion and from rehabilitation (when I finally got there) to deal with my setback.

This week, I came down with bad summer cold.   It started with a sore throat.  I thought it was one more thing that was part of the setback.  And then it went to my head and my head started being congested.   By Sunday morning I was miserable.  I wanted to take my son to Church anyway.   Church is part of our routine, and when I am off routine because I am sick, its harder on him.  I have learned from experience that it will be better for me health wize to push a little harder, so that he’s on his routine.  So we went to Church.

What I didn’t expect was to find out that other mom’s had been sick from something that started as a sore throat and ended as a bad summer cold.  They said the sickness lasted for five days.  Another mom told me that it had become pneumonia for her and for 4 of 5 of her friends.

I came home armed with information for my husband.   I had a cold that might get worse.  I would need his support to rest, I would see the doctor on Monday. If I had what was going around, it might last as long as 5 days.   5 more days!   Man am I tired from compensating around my setback and feeling my grief.  Now this!

But the choice was accept it and deal with it well, or not.

And its brought me to my knees.   Chills, Fatigue, Fuzziness in the head, congestion, the works.

Seeing the doctor was incredibly validating.

Yes, I had whats going around,

yes, it was in my chest and had become bronchitis,

yes, it was long lasting,

yes, I was doing all the right things,

yes, I was getting better on my own (from sleeping and resting and limiting my activities further than previously including cognitive rest), and

yes, if it lasted much longer then it was bacterial and not viral and to take the medicine he prescribed.

It was so good to see him and be validated and told more about my path and what to expect and what others around me could expect.

The funny observation that I have to make here about having this bad cold is the following.

Everyone understands what a setback a bad cold can be both in terms of energy, time and in terms of head fuzziness.

So everyone around me was very supportive.   People helped with my son, my husband really leaned in more than he already had been doing, and I could get empathy and support easily in conversation with friends and strangers. I could use short hand about what was wrong and they got it. People gave me leeway and wished me well.

So even though I had an awful cold and even though I had been needing to rest for 6 months, I was actually able to relax more into getting well.   It was what it was and I got it and they got it.

So different from my experience of my setback caused by my dental appointment.  Where no matter how well I explain what my head is doing as a result of the sleeplessness and headaches, its so far out of people’s reference that they often look quizzical.   Not that I would have understood it either if I hadn’t lived it!

As I was getting better from the cold but head still fuzzy from the cold and from the setback and probably some combination of both, I did something that was really funny if you think about it.   I thought I would make myself a smoothie and I used a metal spoon to get peanut butter out of the peanut butter jar.  My brain wasn’t working so I am not even sure my thought process would have gotten me to a wooden spoon, I just did what I needed to do to get the peanut butter out of the jar.

And then I left the spoon in the high speed blender because the peanut butter wouldn’t come off it.  And I made the mental note that I needed to find something to get the peanut butter off the spoon.   My head was fuzzy and perhaps I got distracted or perhaps my executive functioning skills were worse since my brain was fuzzy or perhaps I couldn’t focus or concentrate or compensate around my attention issues like I normally do.  Who knows?

But I do remember later, seeing the mental spoon in the blender and thinking I need to do something about that.   I added frozen blueberries and some very frozen broccoli.  And then I put the top on the blender and pushed the button.

You might be thinking that there would be a noise when the high speed blender met the metal spoon.  And there was!

But my brain was fuzzy.  I did react to the noise.   I had forgotten what my eyes had told me about the need to pull the metal spoon out, or perhaps the signals in my brain were so loud and no executive was acting to regulate them as an unfuzzy, uncompromised brain would do automatically.

In response to increase noise, I actually turned up the speed of the blender.   I thought the noise was coming from over frozen broccoli, and surely higher power would help.

And, when that didn’t work, I tried turning up the blender for longer!

When that didn’t work, my frustration led me to decide I just wouldn’t have a blended up smoothie.

So I took off the blender top.  And found a very mangled spoon.  I also discovered that my high speed blender blades were mangled too, but hadn’t lost the toussle completely.

I poured out the smoothie, decided to throw away the spoon and wrote a gentle not to put in the blender that I had mistakenly “hurt” the blades.

Being gentle on myself seemed to be the most important thing to do right then.

And then I went back to bed to try to get better.

Read More - And now a summer cold

Emotion affects cognition

aforrest Leave a comment

I am still recovering from the setback I had following my dental appointment.   Its been a tough week, partially because this setback has been going on since June 2, so almost 6 weeks now, and that means that I am tired of being outside my routine, and those around me are also!   I was ready to be back to my baseline weeks ago.

Its also been a tough week because I have been feeling alot of grief because of two recent deaths.   What I did not know when I first had my injury, and what I was taught in rehab once I finally got it, is how much emotions affect one’s ability to think.  With an injured brain, I have learned many skills around feeling my emotions and understanding how they will impact my injury.   I have learned many coping strategies.

In my case, it is my grief this week (and last) that is making my brain functioning more difficult for me.  However, both depression and anxiety are secondary responses to brain injury in my case and I have been having to cope with these as part of my setback.   I have learned that these secondary emotions of depression and anxiety that go hand in hand with reduced cognition affect my ability to think and use my cognitive skills of attention, memory, planning and executive functioning.

On Sunday night, I learned that my high school friend’s Dad passed away and that his memorial service was on Monday.   I wanted to go and I was the only member of my family who could attend.   My family and my friend’s family spent alot of time together because of my friendship but also because my brother was the same age as my friends brother and our mom’s became close also.  When my mom became sick with cancer, my friend’s family was a vital part of our support network.   In addition, my friend’s Dad was a doctor and I had gone to see him for medical advice (and shots!) for traveling to Peru when I was younger, so I knew him not only as a Dad but also in his profession.

I have also been grieving for a young woman, Ann Zeis, who I have written about on my blog.   Sadly, she passed away over the 4th of July and her family and friends reached out to let me know.   Ann was helping me on my blog, and had inspired me tremendously as we had common interests.  I am going to write a special separate blog post on her inspiration in my life tomorrow.  Ann died in San Francisco where she lived, so I have been struggling with the profound loss of her life from afar.

I attended the memorial service for my friend’s father which was beautiful and reminded me of many times in my life that I spent with my friend’s family.   I went to talk with my friend afterwards.   I mistakenly thought that the handsome man standing next to her was her brother, who like I said, I knew well in high school.  We had about a 5 minute conversation the three of us.   I then said that I had a doctor in the same building where my friend’s brother works.   Since the person I was talking with wasn’t who my friend’s brother, and in fact lived in Houston not Austin, and was someone I went to high school, he retorted his surprise that I would have a doctor in his building in downtown Houston.  I realized at that point that I was confused.

I laughed at myself.   My friend later told me how well I dealt with the situation–that laughing was just a great way to deal with it.   It has taken years to learn to laugh at myself when my brain just isn’t quite there.  Its taken years to be flexible and give my brain space when it needs it.   This setback–and the increased confusion and cognitive deficits that it has brought–has really made me have to draw on these coping skills.  Its also made me appreciate that although I did not have these skills when I first needed them after my injury, I have them now.   And I need them to make this setback as short as possible and I have incorporated them in my everyday life so they help me in my daily life too.

Years ago when I spoke for Dr Paul Avarich’s class at Eastern Virginia Medical School in Norfolk, Virginia, it was my laugh that Dr Avarich wanted his medical students to appreciate.   Dr Avarich is a neuroscientist by training and he taught a first year class on neuroscience to his medical students.  I had met him when he did lectures about neuroplasticity at an annual conference at Williamsburg.  I wanted to know as much about neuroplasticity as possible because I wanted to keep getting better.  Years later, I traveled down to speak to his class.  And he pointed out to his students that being able to laugh when I made mistakes or when I did not know what to say (which was often following my brain injury) was a tremendous coping skill.   I now have a deep belly laugh and, as he pointed out, it really lightens up a situation.

I have counseled many after brain injury that letting go of situations where the brain isn’t working and allowing it to be okay that one’s brain is doing what it is doing, will help make life easier after injury.   I know now that my brain being confused or doing what it is doing is not “me”, its just my brain not feeling so well.  I also know that my brain (functioning) will get better the less feelings that I attach to my brain being confused.   It is what it is.   And that I will be able to think better the more that I take it “in stride”.

So that is the challenge of this week.  Dealing with my grief for the death of two lovely human beings who have contributed greatly to my life and allowing myself to feel my feelings of grief.

And at the same time deal with the effect that my grief is having on my ability to recover after my setback.

Its okay.  I need to feel my grief, and feeling my grief, although it may temporarily increase the difficulty of dealing with my setback, is what it is.  All that I can bring to this process is the awareness that I now have about what’s happening with my brain.  And at least I have that, now!

I need to get off the computer so I will publish this as is.  When I am better, I expect to come back to these posts and edit them, but for now, they will have to be as they are.

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Better but not completely back and Happy 4th

aforrest Leave a comment

I am 70% better, but not all the way back to my baseline.

I had good news from talking to my Doctors.

My Neurologist says that if I have gotten 70% back, then the 30% will come.

He told me I am doing all the right things–cognitive rest and physical rest.

He was pleased that I had reached out to my support team and that what I am doing it working.

He did objective test to show me that although I have increased memory and cognitive problems, I can pass his simple cognitive tests.   They are still there!   When he was asking me questions, I remembered all the hard work I had done in rehab to get these back.   And I was thrilled they were still there.

More later.

Happy 4th.

I will continue to rest and get cognitive rest until the other 30% gets back.

 

Read More - Better but not completely back and Happy 4th

On the mend, at last!

aforrest Leave a comment

What a week!

I woke up Monday morning with a headache.

Up til Monday, I had been operating under the belief that I was getting better slowly.  I believed that I had gotten my headaches managed again as I was not having them anymore.   And while my sleep patterns weren’t back to my baseline yet, they appeared to be improving.  I was still waking up twice, but I has waking up later and later each morning — from 3ish to after 4 for the first one.   I took these all as good signs of healing compared to the previous couple of days.

Like I said, then, I woke up with a headache.   Getting my child off to a new camp with a headache was more than I could manage emotionally, although I did manage to get him there and get his day started with a successful dropoff eventually.

As I later described it, I think if I had woken up with a headache any other day, it wouldn’t have gotten to me, but to start the week with a headache was just too much.   And while I thought that I was getting better by the end of the previous week, it was clear that I wasn’t and that I needed to re-think the steps I was taking to get myself better.

There is nothing like an acute health crisis to show you exactly where the holes in your medical and rehabilitation and recovery team are!  And I already new that I had not yet managed to develop the support team around my persistent symptoms that I needed here in Austin, even though I have been working hard on that for almost 3 years.

So I reached out to former speech therapist here in Austin to see if she had any suggestions until I was able to see the Sleep Doctor.  I had called the Sleep Doctor’s office previously and they had worked me in for July 1 which was the earliest they could do it.  My Sleep Doctor, Dr Hudson, is a great doctor and thus is in high demand, so its not easy to get in to see him quickly.

My former Speech Therapist responded immediately that she had a handout on brain rest, but was not in her office and she suggested reaching out to someone who was in the office.

I also reached out to a friend who is an MD and is familiar with sleep medicines and brain injury recovery.   She confirmed that many of the medicines can exacerbate the cognitive symptoms.   Since the cognitive increased symptoms that I was having because I was getting poor sleep were really trying to me.  Trying to take the symptoms in stride was wearing me out.  So I was glad to be reminded that these options were a last resort.

In reaching out to others, I remembered that cranial sacral work had helped me in the past and that my former speech therapist had told me that many of her patients got calming results with that.  So years ago I had found the best cranial sacral therapist in town and had indeed gotten alot of relief from this modality over a years period.  So I reached out to him.

The person who had done cranial sacral therapy for me agreed to do some for me even though he was in the process of leaving Austin.

Tuesday I felt better because I had reached out to my network and knew more of my options.

And Wednesday morning, we did a cranial sacral session which helped.  I had more energy afterwards, I felt better and I slept quite differently that night.   The next couple of days, I realized that my cognitive deficits were no longer getting worse each day from unrestful sleep.   That was a huge relief!

I am going to have to explain how it helped and what it did and did not do, but I will wait til next week, since I still am managing how long I stay on the computer.   I am doing minimal editing of this, and will come back to things I have missed in this description when I am back to my baseline.

 

Read More - On the mend, at last!

Staying Afloat

aforrest Leave a comment

I have truly had a week from hell.

Mind you, I knew that my week would be more difficult and I prepared for that.

I knew it would be more difficult because this is the first week of summer camps for my son, and making the transition from no school, and a Memorial Day trip, and then a week of little structure to a week of camp is a big transition for him. His days go better when there is structure to them and when his days go better so do mine!   In addition, more structure is helpful for my days going well, regardless for him.   Less structure requires that I spend more energy getting through the day and it requires more emotional energy to be patient and to be able to tolerate what comes up.  It also requires more flexibility which is something I am trying to cultivate but is still, shall we say, “not my strong suit” after my injury.

So my Monday went more or less as I expected.

Tuesday, I went to see a health professional who I have worked with previously and whom I thought was helping me.

It was a horrible experience.    I am much worse off for seeking the health care I needed than I was before I went.

In short, I have pain, I couldn’t sleep, my cognition is worse because I am in pain and because I cannot sleep,

I cannot do my job as a mom and a wife this week.  Others — my husband, sitters and friends — have had to lean in.   I have reached out to my support network.  I have also tried to write about to help me try to process it and try to what happened.    I was aware in the health professional’s office that things were not making sense to me.

With my persistent cognitive disabilities, I could not take care of myself sufficiently although I tried.  The got out of there as soon as I could wish was not soon enough in retrospect.   I realize now that I stayed there as long as I did because I was over-committed in trying to get the health professional to help me.

On Thursday afternoon, I reached back out to Dr Wayne Gordon, an expert in unidentified traumatic brain injury and someone I have worked with on several occasions during my advocacy.   I had called him last Friday and had planned to return his call this week.

On Thursday I realized that the most I could make of this week was to start afresh next week.   I told him unforeseen events had come up that I was coping with as best I could had come up and that I would reach back out when I could.

He wrote back “Stay afloat!”

I cannot begin to describe how important his words and encouragement were.

He got it, and he got it  just right!

That is exactly the name for the compensation strategy that I was using without realizing it or naming it for myself.

What his words meant for me was that I realized was working hard to not be sucked down into a negative spiral.

Stay afloat was what my goal right now!

Once I realized that my goal was to stay afloat I realized that tomorrow would be a better day.

It has to be!

Do whatever I can to not get sucked down by the unfortunate circumstances that had befallen me in trying to get health care that I needed.

What strategies do you use to “stay afloat” ?

And dare I ask, what strategies do you use after you have seen a health professional who has done more harm than good?

Do you have a different name for this strategy?

 

 

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Comprehensive Management of mild TBI

aforrest Leave a comment

Two weeks ago, I wrote about my new friend who is trying to get medical help in understanding her symptoms that she suspects are related to multiple falls and the empathy I felt for her after my own difficult search to find the help I needed to recover after my symptoms following a car accident in which my head went from side to side and back to forward.

I want to post some information that I heard on Webinar sponsored by the Brain Injury Association of America.   The Webinair was on Comprehensive Management of Mild TBI by Dr Kevin Crutchfield, MD and Dr Jessica McWhorter, PhD.  Dr Crutchfield is the Director of the Comprehensive Concussion Program and Director of the Noninvasive Vascular Laboratories at Mt Sinai Hospital of Baltimore and Dr McWhorter is a Rehabilitation Neuropsychologist at Berman Brain and Spine Institute also in Baltimore I believe.

Before I post more, I want to say that I am a big fan of Dr Crutchfield.  I attended a seminar that he was also a participant in, and I introduced myself to him because I was so impressed with his questions for the speakers.   Later, when I had another concussion (after the concussion that changed my life and livelihood), I traveled up to Baltimore from Northern Virginia to see him for a second opinion when I my new symptoms were not resolving.   He validated the need for a new sleep test and had several other suggestions.  His referrals helped my life enormously.   And he has helped a number of people that I have sent up to Baltimore, for a second opinion, in life changing ways.

I also want to say that he is by no means the only doctor that does comprehensive care for mild traumatic brain injury.   I am posting because his webinair had slides that said what comprehensive care is.  Since I had so much trouble getting to comprehensive care, and since I meet so many people who do not get comprehensive care initially–or who, like me, do not even know what comprehensive care after mTBI is– I wanted to post what it is.

This morning I heard the statistic from Dr Cheryle Sullivan that roughly 80% of people with TBI don’t get to treatment at all.   Much less comprehensive care.   And many people that I meet, thought that they were getting comprehensive care when they went to their doctor, because surely their doctor knew about concussion.   Later they found out, when they are not getting better, that they may not have gotten all the care that they needed.

One of the many objectives of the Webinair was to identify the essential elements of a comprehensive approach to mTBI.

I want to include information from the medical part of the discussion in this post.   I wish that I had had a comprehensive evaluation when I first had my injury in 1997.   Brain injury treatment has advanced tremendously since that time.   When I think about what I wanted to know it was what comprehensive treatment for mTBI was.

So here in 2014, I want to know that I have stated what I believe is good information about what to look for in treatment.   I struggled many years with symptoms that I believe I would not have had to struggle with had I gotten to comprehensive treatment early on.   I believe I am correct about making that statement because when I finally got to most of the treatments discussed, they helped me.   Earlier treatment is thought to be more cost-effective and faster than later treatment according to researchers.

I also want to say that many of the people that I meet through my public speaking and through my advocacy have not been evaluated comprehensively and are grateful for knowledge of what kinds of diagnoses have been helpful to my recovery and others, and what kinds of treatments are available so that they can recover further and move their lives forward as best as possible.

In the Webinair, Dr Crutchfield, a neurologist by training,  presented and discussed the following information:

Diagnostic evaluation should include:

-concussion scale

-neuro-ophthalmology (which includes vision therapy (added from my notes by ASF))

-referral to a mTBI program

-sleep test and referral

–physical therapy

–speech therapy

–cognitive therapy

–EEG

–Imaging

Source: Comprehensive Management of Mild TBI, slide number 22.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

My layman’s understanding of a diagnostic evaluation is that the Doctor should consider all these possibilities and should pursue evaluation if the symptoms presented warrant it.   For example, an EEG might be done is seizure is a possibility but not done if seizure is not a possibility.

Since I am translating this information for the non-medically trained I want to present a second slide about what is treatable.

The slide is:

What can we Treat?

When rest alone provides no relief.

–sleep disturbance

–headaches

–visual disturbance

–mood alterations

–behavioral alterations

–vertigo

–imbalance

Source: Comprehensive Management of Mild TBI, slide number 28.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

I will reach out to BIAA to find out is the Webinair is available for viewing and how one views it.   I reached out to Drs Crutchfield and McWhorter about their webinair last week and I hope to hear back from them.  I have questions for them and I will report back.   And in my next posts, I will post more about the concrete ways that comprehensive management would have helped me.  I also want to discuss that comprehensive management of mTBI by doctors and health professionals is also a goal of the Ontario Neurotrauma guidelines that I have posted earlier.   www.onf.org.

 

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Finding the Best Doctors

aforrest Leave a comment

I have been trying to help a new friend who suspects that the symptoms she has struggled with for years, since age 16, are possibly the result of cumulative brain injuries during falls.

She found the article in the Washingtonian Magazine about my recovery and much of it seemed so familiar to her that she reached out to me. www.washingtonian.com/articles/health/i-wanted-my-brain-back/

Because of my own struggle finding appropriate rehabilitation, and my own health and functionality improvements when I did get to rehabilitation, her story touched me.

You see, many years ago, I remember reading Dr Claudia Osborn’s book  “Over my Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out”.

Reading her book helped let me know I was not alone.  And I had felt very alone on the day I found the book at the Barnes and Noble on 18th and L  Streets in Washington, DC.

I was roughly two years out after my injury, and I had just gone to see my neurologist and was feeling depressed as I sorted through the appointment in my mind.   I don’t even remember what I felt depressed about but my guess was that I felt no one seemed to have the urgency that I felt was needed when it came to fixing my brain so that I could get back to work and get on with my life.  I was desperate for answers and hoped that there would be something on the bookshelf that could help me.

When I say that I remember “reading” Dr Osborne’s book that is not quite correct.  I remember the book, that part is correct.   I just wasn’t able to do what I would call “reading” at the time. So looking in a bookstore for a book about brain injury wasn’t something I thought to do — I avoided books.

I couldn’t really read, and whatever you’d call what I was doing–looking, skimming, taking in what I could–I could not do more than 2 pages at most at a time.

While I cannot say that I was aware of what was wrong with me after my injury, I was aware that I couldn’t absorb what I was reading.  I noticed that while trying to read Time Magazine in the waiting room for one of my doctors.

So looking at and taking in just a little of the text that Claudia Osborn had written made me sob.  Not just cry but sob.

I felt that Claudia Osborn was able to articulate all the things that I would say if I could tell my story.  I felt that she was telling my story even though her injury was different.  And she found access to doctors and resources after her injury.

From reading her book, I knew that Claudia “got” what the injury was like and that she could describe it.

That meant there was at least one other person in the world other than me, who got it.   And she could articulate in print what her experience was like.  Which I couldn’t at the time.

So when my new friend reached out after reading my story in The Washingtonian Magazine, I wanted to help her get to good medical care. I wanted to help her so that her journey would be a little shorter and perhaps a little more efficient and a little less of a struggle than mine.

And, if her problems weren’t from brain injury, I wanted her to get to doctors who were knowledgeable enough to know that persistent symptoms following brain injury was not her problem, and not a doctor who wasn’t knowledgeable enough to clear her appropriately.

You see, in my journey,  I have learned that some doctors really understand brain injury and patients are lucky to get to them.   However, many doctors were not sufficiently trained and hence are not sufficiently knowledgeable about concussion or about persistent effects following concussion.  Doctors who are not sufficiently knowledgeable cannot help a person who actually needs further medical care for their symptoms to get to the right place. Another frequent error that I have learned that some doctors can make is to tell the patient that their symptoms are definitely not a brain injury when they are not knowledgeable enough to make that determination.

How have I learned this?   I have learned this through my experience first and foremost. Although I desperately needed rehabilitation, I had quite a struggle getting to it and there were many barriers and pitfalls along the way.

Getting to appropriate specialists and getting to rehabilitation turned my life around.   So I am going to be brazen here and say that if I had gotten to that same rehabilitation earlier and in a more consistent and less piecemeal fashion, it would have been beneficial to me both in terms of my health, my productivity, my well being and my finances and my livelihood.    (It would also have been beneficial to my  health insurance company’s finances!).

I also know this from hearing countless stories from others who cannot find the health care they need, or worse, who are being told they are malingering, even as they seek care.

I also know this by talking to health professionals and from volunteering at the Brain Injury Association of America and talking with staff members at WETA/Brainline in Washington DC.  I know it from my work with the American College of Rehabilitation Medicine and from my work with the Ontario Neurotrauma Foundation.

The researcher in me also knows that there are several academic studies that provide more objective evidence about the pitfalls of getting to care. However, citing those studies right now on this blog is a little of a leap of faith for me because I don’t have the memory skills to find the studies and I am still struggling with learning what research I feel comfortable talking about and what I do not yet feel comfortable with talking about.  I am still not very organized, and even 2 1/2 years after my move finding and citing the research is still a task that I have not had the time to master. However, I am hoping that providing research citations is something that someone will help me learn soon.

What I will say from my experience is that many survivors, just like me, do not know that they are not getting to appropriate care after mild traumatic brain injury.   And it may well be the case that most survivors of mTBI do not get appropriate help.  As I said in my speech at the Congressional Briefing in 2011, the estimates of the annual number of people with brain injuries that are not identified in the US exceeds the number that are identified.   That is an astounding graphic!  (I just looked for the graphic on the Center for Disease Control and Prevention (CDC) website and cannot find it, else I would post it!)

Many, like me, are not even counted in the statistics on mTBI.   People with mTBI are not counted in the CDC statistics because we either were not treated in the emergency room or our injury was not identified in the emergency room.

Its impossible to study directly how well those who are not counted in the CDC statistics are treated, if at all, and how complete their recovery is or is not.   I think that is a fair statement.

 

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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.

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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.

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