Sunday, June 16, 2013

Brainlash by Gail L. Denton

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 healing t.b.i. 




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