Book Review

Brainlash:  Maximize Your Recovery From Mild Brain Injury, Gail L. Denton.  New York: Demos Medical Publishing, LLC, 2008.  Third Edition.  e-book, 343 pps.

Brainlash is a book that is divided into 42 short, easy-to-read chapters interspersed with a journal kept by the author regarding her own brain injuries.  Although Dr. Gail L. Denton is a professional therapist, I encountered choppy and repetitive sentence structure in her book.  I was not expecting this from a licensed professional.  The book could have benefited from better proof-reading.  There were no grammar mistakes.  There was a certain lack of variety within the sentences which in my opinion ought to have been corrected.  Some crucial information was also missing.

Denton refers to m.T.B.I. [mild Traumatic Brain Injury] as an epidemic without accounting for changes in definition which renders an increase in diagnoses.  This "T.B.I. is an epidemic" refrain is one that is often heard in order to boost attention to the problem and hopefully garner more funding for an organization.  I could not help but note the similarity to the claim that "Autism is an epidemic."  The bottom line is that there are a bunch of diseases and conditions which need more scientific research so that best practices can be refined.  

It is "easier" for the State of Vermont to award the contract for all treatment of traumatic brain injury to an agency of visiting nurses than to figure that some brain-damaged people will wind up not getting services as a result of their lack of insight into the nature of t.b.i.  It is "easier" for the frustrated medical professional to latch onto the diagnosis of Post-Concussive Syndrome and treat those symptoms rather than to deal with the whole person and the nature of life-altering events such as brain injury.  It is "easier" for the New York State Health Department to contract the services of a man with a diploma mill PhD to treat t.b.i.-ers than it is to find out which providers actually have a real PhD and decide which one or ones might be best equipped to give effective neuro-cognitive treatment to survivors.  It is "easier" for folks to say to their friends suffering from brain damage, "Oh I get that too" or worse, "You were always like that."  It is easier to push people into the round holes rather than to pay attention to folks who don't fit into neat little protocols.  This whole "Oh noes, _______________ [condition of the moment] is a national epidemic!" thing ought to be put to rest.  All of us, regardless of disease, condition, or health status deserve scientifically-validated treatment protocols.  What doesn't work doesn't work.  Anecdotal testimonials are inferior to peer-reviewed literature.

I can tell you that some of the chiropractic treatments I received "worked for me" to relieve pain on a temporary basis.  I can tell you what they were.  A hundred or a thousand or a million people can tell you similar stories.  But the stories are only stories.  Alternative medicine is popular.  It's the latest buzzword.  People need hope.  Chiropractors, tarot readers, politicians and others sell hope.  But how well does the hope actually work?  I can tell you that I've improved but does my claim hold up under scrutiny?  Do I have test results and proper medical reports to back up what I am claiming?  Goals have to be measurable and results have to be measurable too.  Gail Denton didn't find satisfaction with traditional treatment for her traumatic brain injuries.  So she went elsewhere.   

To be sure, the western medical establishment and the individuals in it are not perfect.  And with concerns about costs, those of us who don't fit into a traditional mode are often discarded left to be in charge of our own rehabilitation efforts.  Insurance companies are designed to cover as little as possible.  No fault automobile insurance [for the states that have this] means "We ain't paying cuz it ain't our fault."  I've fought for medical treatment.  I had to get a lawyer.  Writing in a journal [something which Denton recommends and which I think of as an okay thing for those who want to do so] can be dangerous when it comes to legalities.  Consult with your attorney before deciding to keep a journal if you are a plantiff or a defendant in a lawsuit stemming from your accident.  Don't have a lawyer for your workers' comp case?  Get one.  Your employer has at least one lawyer.  That is almost a guarantee.

One of the things that is crucial in my view for brain injury survivors is neuro-psych testing.  The testing [in my case done by a neuro-psychologist at a rehabilitation facility] is necessary.  Neuro-psych testing pinpointed the areas of my greatest cognitive difficulties as well as my strengths.  I needed to know these things so I could develop work-arounds.  Work-arounds are strategies that I use based upon my strengths that help me in daily life.  With brain injury, battering on our areas of cognitive weaknesses in the name of remediation [in my non-professional opinion] doesn't work.  One of the symptoms of my brain injury is repeating the same mistake.  Attempts to train my way out of repetitive mistakes failed.  I had to find a way around making the same mistakes over and over.  I learned that any ability that I used to have at multi-tasking was pretty much dead.  To this day, it remains dead.  Forcing myself to multi-task in small steps did not work.  What worked for me was finding ways to avoid multi-tasking.  I had to do things in different ways.  Neuro-psych testing provides a roadmap of "where to go from here."  It is vital.  Get some.

The other thing that Denton neglects is testing for complicating conditions caused by the brain injury itself.  I remember these statistics:  
          80% of us have vision problems as a result of our brain injuries.  These vision problems are not limited to field deficits [something Denton does mention].  Vision problems may be expressed as double vision in one or both eyes, perception problems, the appearance of "ghost-lines" around the things we see, ocular motor dysfunction [the eyeballs not moving well], photo-sensitivity in varying degrees up to and including true photo-phobia, dry eyes because we don't blink as much as we used to.  This list is by no means exhaustive.  One of the things not on the list is visual acuity.  Visual acuity is the thing measured by the Snellen Eye Chart.
          20% of us have hearing loss as a direct result of our brain injuries.
          50% of us have sleep apnea or other sleep disorders as a result of our brain injuries and/or obesity occurring after a brain injury. 
         Up to 90% of us with left frontal temporal lobe damage develop [or have worsening problems, if there was a pre-morbid mental health diagnosis] Major Depression.  

What do these numbers mean for those of us with acquired brain damage?  Hearing should be tested.  How our eyes function [not just visual acuity] should be tested.  We should be screened for the existence of a sleeping disorder and some of us will be then referred to a lab for a sleep study.  Our mental health should be evaluated by a clinician who is familiar with traumatic brain injury.

The last piece of vital information missing from the pages of Brainlash is the idea that the categories "mild," "moderate," and "severe," denote things like how long a loss of consciousness was in the event that caused the brain to go bangity bang bang but those categories are not correlated with disability outcome.  In other words, a person who is given the diagnosis of mTBI [mild Traumatic Brain Injury] can wind up with more permanent disability that someone who is given the diagnosis of moderate Traumatic Brain Injury.  A person with severe Traumatic Brain Injury may be able to have gainful employment after treatment and someone else adjudged as mild or moderate may not.  Finally, "mild" does not mean that the brain injury is not serious.  All brain damage is potentially life-altering.

Brain injury survivors in the States ought to get in touch with their state Brain Injury Association.  These associations vary in effectiveness and aid offered to the survivor.  Some have support groups.  Some have scholarships for survivors in economic hardship to attend their state Brain Injury Conference.  Some hold informal discussions.  Some are involved in other talks and one day conferences which survivors may be able to attend for free or at a reduced rate.  Some have lists of medical providers who are familiar with t.b.i. and some refuse to provide any information about that.  If you don't contact your state B.I.A., you won't know if there is help available to you.  If you have contacted your state B.I.A. and found them lacking, you can look up your regional office of Independent Living Associations.  Folks who work for an I.L.A. often have disabling conditions themselves.  Many I.L.A.s provide informal peer counseling, disability advocacy, and benefits advocacy.  And yes, they do have lists of other agencies that may be able to help. 

sapphoq reviews says:  The book Brainlash has a lot of promise but does not deliver.  Although the chapters are short, the information provided is of the "nothing new here" variety.  Survivors who need support would do well to look for it via neuro-psych testing, a state Brain Injury Association, an Independent Living Association, and/or on-line via brain injury chatrooms and e-mail support groups.  Skip this book. 

this entry was cross-posted to sapphoq reviews.

The Eyes [May] Have It

I was heartened today to see one tiny article about the possibility that visual difficulties may aid in the accurate diagnosis of traumatic brain injuries in veterans who continue having troublesome symptoms after sustaining a blast.  Psychiatrist Elaine Peskind noted that the vets she tested had irregular movements of their eyeballs.  Neuro-Optomologist Randy Kardon demonstrated that the vets exposed to blasts had retinal cells that were thinner than expected and also had developed photo-sensitivity.  [ article located here at: http://www.turnto23.com/lifestyle/health/eyes-may-provide-new-insight-into-brain-problems-including-tbi-in-soldiers ]

I've known about tbi-related eye problems because I have them.  I was diagnosed with true photophobia, ocular-motor dysfunction, and dyplopia in one eye.  The external vertigo that I experience on a daily basis [the room spins to the left] with occasional temporary upswings  is responsible for my latest back injuries which have landed me back in physical therapy.  Nystagmus, I have it now.  I did not have it pre-injury.  Misinterpretation of visual data in the brain has caused visual disturbances.  These are not frightening.  And dry eyes.  Because I no longer blink as much automatically as I used to.  Reading was not possible for me for longer than thirty minutes [and sometimes not possible after much less than thirty minutes] until the introduction of an e-reader.  It is not large print that I need.  My visual acuity is within the range of "doesn't need glasses while driving."  What I do need, and the e-reader provides for me, is more white space between words and the ability to adjust the light settings.

When hunting down the research into the use of various visual tests and measurements in the diagnosis of traumatic brain injury with our troops, the earliest reference I found was dated 2009.  This is the sort of thing that should have been reported on by the media much earlier than yesterday.  The research has implications for all of us who have sustained brain injuries from a variety of causes.

While I applaud the Veterans' Administration for the research being undertaken on behalf of soldiers who have suffered and who will continue to suffer blast injuries, it is my sincere hope that refinements to the diagnosis of a t.b.i. and delivery of services designed to address tbi-related visual difficulties does not become bogged down in the usual bureaucratic paperwork and a system which seeks to deny our vets services when at all possible.

sapphoq healing t.b.i.


Other references:

http://www.rehab.research.va.gov/jour/09/46/6/pdf/cockerham.pdf

http://www.wired.com/wiredscience/2013/05/neurologist-markam-human-brain/

http://www.army.mil/article/74675/

http://www.lowvision.org/traumatic_brain_injury.htm

https://www.ncbi.nlm.nih.gov/pubmed/20104404

http://www.brainline.org/content/2010/02/vision-issues-after-brain-injury-brainline-talks-with-dr-gregory-goodrich_pageall.html

She Slammed My Head into the Wall or He Beat Me with a Tire Iron

I remember my dad driving me somewhere in a car along the Garden State Parkway going north.  A call-in talk show was on the radio.  Women were calling in and talking about the physical abuse they were enduring from their husbands.  One man called in to complain that his wife was physically abusing him.  My dad made fun of that.  "Oh yeah," he said, "She beat me.  She's a tiny little woman and I'm a big man and she beat me."

There was no domestic violence hotlines back then.  When the hotlines first appeared, heterosexual women were first recognized as being victims of domestic violence.  Women whose husbands or boyfriends were the victimizers were given help.  At first, lesbians were not welcome at domestic violence shelters.  The lesbians protested and so that changed quickly.  The idea that a man could suffer domestic violence at the hands of his male or female partner came later on.  

Yes, a man can be physically abused by his partner-- male or female.  I have seen evidence of this more than once.  And yes, a man can be raped.  I knew a man who had been [legal word "allegedly"] raped by a woman.  It was a very traumatic experience for him by his description some twenty years later when I met him.  This is something that is not talked about much even today.  And yeah, my dad in his old age experienced [legal word: "alleged"] physical abuse at the hands of his domestic partner.  I will not offer you proof here in the form of the physical examinations by qualified physicians that do exist nor will I offer you the police report.  Consequently, any references to direct knowledge that I have will remain under the realm of "anecdotal only" by necessity.

After my traumatic brain injury, I had [sigh, and still continue to have] problems with uneven ground and long, narrow spaces.  I fall.  I fall more than I used to fall and I fall more than the average person falls.  Some docs say yeah that is a balance problem even though it is not caused by an inner ear problem.  Others say that isn't a balance problem because I don't have an inner ear problem.  The bottom line is that when I've toppled over once again [and I usually but not always tend to fall to the right when I do fall], I don't rightly give a shit whether a medical professional calls it a genuine balance problem or not.  The external vertigo [the "room" spins to the left 24-7] is a constant but a constant that I am now used to.  My tendency to fall is not something that I am able to compensate for effectively.   It's a pain in the ass to always have to be conscious of this particular liability and to fall despite my best efforts not to.  I've hurt my back twice within the last two months because of falling.  The physical therapist advises that indeed my falling problem has to do with my perceptual difficulties rather than anything that physical therapy can fix.  "That's what the special eye doctor told me too," I said.  That sucks.  I work really hard anytime that I land in physical therapy.  So if P.T. was able to fix this, there would be a different sort of hope than the hope I currently have.  Rather than hope for the falling to stop, I now have prescribed exercises to loosen and stretch my hamstrings as well as some to strengthen the muscles around my spine.  And we will also be doing stuff to help with uneven ground.  The physical therapist also advises [so many years after my brain damage] that my right side continues to show evidence that it is worse than my left side.  A bit discouraging because I do a lot of work to help myself.  Reality nonetheless.  I can complain about it so that beats being dead and unable to complain about it any day in my book.  

My brain damage [or if you wish to refer to it in vanilla and sanitized words, "my traumatic brain injury"] was caused by an automobile accident.  Falls is another biggie.  In no particular order, there's also poisoning, strokes, brain tumors, drowning.  And suffocation, strangulation, shaking, gunshot wounds, beatings around the head and the neck with or without implements such as tire irons.  If someone else does the suffocating, strangling, shaking, shooting of gun, or beating that's abuse.  If someone who is sharing living space with you does it, that's domestic violence.  If they are your partner, that's intimate [partner] domestic violence.  And yeah, you can get brain damage-- or a traumatic brain injury if you wish to sanitize the phrase-- from those things.

Researchers have researched the connection between head injury and domestic violence. They've written papers and stuff.  I found bunches of the papers on the web.  There is even an acronym to help emergency room personnel and others remember to ask about domestic violence and brain injury.  H.E.L.P.S. stands for Hit, Emergency Rooms, Lose Consciousness, Problems, Sicknesses.  A pdf can be found at: http://new.vawnet.org/Assoc_Files_VAWnet/HELPSScreeningTool.pdf along with a more detailed explanation than the one that I am going to give.

Hit:  Did you ever hit your head?  Did someone hit your head?

Emergency Rooms:  Did you ever visit an emergency room or been hospitalized?  For what? 

Lose Consciousness:  Did you ever lose consciousness?  For how long?  Why?  [Caveat: One does not have to lose consciousness in order to have a brain injury].

Problems:  After hitting your head / being hit on the head have you had any problems?

Sicknesses:  After hitting your head / being hit on the head have you had any sicknesses?

Over at: http://new.vawnet.org/Assoc_Files_VAWnet/HELPSScreeningTool.pdf what follows the H.E.L.P.S. chart is a suggested list of questions tailored for women victims of domestic violence in order to screen them [I hope people think to use this for MEN who are also vics of domestic violence, sigh] for signs of head injury.   

My first neurodoc after my life-changing brain event earned the nic the needle-sticking neurologist.  His practice was primarily composed of people like me.  Most of us had been diagnosed as having a traumatic brain injury.  All of us had various pains which required pain management.  The nerve blocks I received from him [six very long needles to precise areas in the back of my skull three times] eliminated the constant HEADACHE that never let up no matter what.  I had fallen the day before going to see him once.  Consequently, I was black and blue.  He noticed.  He asked me if I was okay, if my housemate had done this.  After I replied in the negative, he had one of his female assistants come in and ask me the same thing.  Although I wasn't being abused, I did appreciate that he had thought to ask.  And then thought to send in a sympathetic woman ["Honey, are you okay?  What happened?..."] to ask just in case I would feel more comfortable to disclose the abuse [which I wasn't suffering from] to a woman.

sapphoq healing t.b.i. says: Yeah.  Some people-- women AND men both-- do wind up with brain damage [a.k.a. brain injuries] from domestic violence.  There's lot of info on the web for anyone who wants to read about it.  I recommend this here site: http://www.opdv.state.ny.us/professionals/tbi/index.html as being most comprehensive and easiest for a layperson to understand.

Three Dimensional Fun

The picture is of an open floor plan house that I created on Trimble© Sketch-Up.  I have the free version which Google© popularized.  You can find more of what I've been playing with at the 3-D Warehouse© .  My collection is called "do as you will."

Since my motor vehicle accident and resultant traumatic brain injury, I have all kinds of perception and ocular motor
problems.  These difficulties are not a result of any deficiency in my visual acuity.  [Visual Acuity is measured by the Snellen Eye Chart, how clearly one can see and results in a measurement of a/b e.g. 20/20, 20/30...  My visual acuity is very good.  I don't need glasses to drive].  But my eyes don't play nicely together or with my brain.  Consequently, I live with double vision and photophobia.  Almost nine years after my brain damage, I continue to work at cognitive exercises and puzzles daily.  One of the things I've started to play with is the free version of Trimble© Sketch-Up. 

Since around the middle of August, I have been creating three dimensional models of shapes, houses, other buildings, furniture (mainly coffee tables), and a few other random things almost daily.  And I've gotten better at it.  There are free videos available but I've found that I am better off experimenting with the toolbar myself and only resorting to watching part of a video if I get stuck on something that I am attempting.  I like making the models and found it a natural progression from making e-stationary and textures.  [Note: the textures on my house above are all included with the free version of Sketch-Up.  So they aren't textures that I've created].

I've found creating a ball to be more difficult than making any of the models in this sample of things I've done.  And creating 3D shapes (-- other than the rectangle-- rendering a successful model of a four sided di took me several hours) was harder for me to learn than how to chauffer edges.  (The surface of this kitchen table is chauffered, using a tool called "Follow Me).

 

 

 

 

I like challenging myself to learn new things, even stuff that forces my eyes and brain to work together.  And forcing myself to use my damaged brain to think in new or unfamiliar ways is a definite win.

sapphoq on healing t.b.i.

Working on my Visual Perception Problems

My traumatic brain injury left me with some rather outstanding perception problems.  Because I have diagnosed permanent double vision in one eye, I have been treated to the sight of folks with two heads, four arms, and two torsos which extend into one set of hips and two legs casually jogging in my neighborhood.  Because I have been diagnosed with ocular-motor dysfunction and a visual accommodation disorder, objects and people appear as having ghost lines around them, especially when fatigued and my brain is too tired to block those ghost lines.  (And let's not forget the photophobia which is responsible for me limiting my driving at night to "only local and only when not tired."  And my fatigue from dealing with all of this which led me recently to switch to an e-reader which is set to make reading easier for me).  


I know that first paragraph sounds like I am whining.  But really, I am not whining.  I want to tell you about Google Sketch-Up®.  Sketch-Up® is a three-d modeling program that is available at http://sketchup.google.com/download/ as freeware.  [If someone is a professional and wants more bells and whistles, they can buy a professional version from Trimble].  I like three dimensional stuffs and I also like animation.  I've been endeavoring for some time to use DAS®, Bryce®, Blender®, and Hexagon II® and I've had no success to speak of.  [Those four programs were all available as free legal downloads a couple of months ago from their company's website.  I believe the special offer may have ended.  At any rate, I got in on it the very last day].  Those programs were too hard for me to learn at the present time.  One night I happened upon Sketch-Up® and promptly downloaded the free version.  

In short order, I found that I was able to produce rectangles, circles and 3d text.  [If you want to see a few of the things I've made, google "warehouse lovemakesafamily" to find some examples that I've uploaded to Google Warehouse®].  After watching a few free tutorial videos,  I went on to make several skyboxes, some other shapes, and a box with a chaffeured lid.  As I continue to work with my digital camera and computer art, building in Second Life®, and Google Sketch-Up® I've noted some improvement in the way that my eyes work together when I practice  my vision therapy exercises.  This improvement I must still label as "subjective" since it has yet to be confirmed by my t.b.i. eye doc. 

Sorry to the dedicated optimists who want me to say that my vision problems are totally abated, cured, or not permanent after all.  It simply ain't so.  I have to deal with my situation as it is and not engage in dreams of being "almost or exactly 100%" of who I was before my accident.  I am very fortunate to be alive.  I would have been better off-- certainly financially and in some other ways as well-- had the motor vehicle accident not happened.  But things are what they are.  I continue to deal with Briella [my still brilliant brain, just a bit sideways] on a daily basis.  When I think back to how far I've come from the early days of sleeping twenty-two hours every twenty-four, relearning on the computer how to write a complete and organized sentence, playing Tetris® because other T.B.I.ers told me it would "help" with my eye-hand coordination, and myriad discussions about the names of the seven dwarves, I smile broadly and say to myself, "Yup I done good.  Now I gotta keep striving."

sapphoq healing t.b.i.