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Simple tips understanding brain injury: food for thought

01 Feb

Recovery from brain injury prognosis is better when younger.  Prognosis is always best with proper rehabilitation.  Is ongoing rehabilitation cost-effective? Average age for traumatic brain injury is 25.  With an aging brain the recovery is poor.

Even though rehabilitation is expensive wouldn’t it be better to help these people become productive citizens again?  Most would rather be working than collect a social security disability check, veteran’s disability check, worker’s compensation check, disability check, disability medicare, health insurance, and other benefits that drain the system and does nothing to improve the quality of life for TBI survivors.

  • Prognosis better younger
  • Prognosis poor with age
  • Average age 25 for TBI
  • Best with proper rehabilitation
  • Rehabilitation cost-effectiveness?

This drains the life out of the survivor and family.  It’s a struggle to fight for things and correct errors constantly.  Have you wondered why people struggle so much?  Many spend hours on the telephone correcting errors with agencies involved.  This is time-consuming and drain on the survivor, their families, and agencies involved.  images-186

So, given the statistics that the average age is 25 for traumatic brain injury with the best outcome occurring younger rather than older. What choice would you pick?  Having your entire life wiped away simply because it’s such a complex injury and it’s not cost-effective to treat traumatic brain injury. It’s an invisible injury that few understand.  They don’t get it, till they get one!

  • Time consuming, all encompassing, and drains life out of survivor and family
  • Daily struggle to make constant corrections & attend appointments
  • Don’t get it, till you get one!

Individuals are diverse with so many variables come into play.  Just because every life has different experiences.  Could this be one of the problems why brain injury is so difficult to understand and treat?  How can we understand people with brain injury if we don’t understand human behavior?

Behaviors are difficult to understand, unless you are privileged to know the person their entire life.  These behaviors are based upon life experiences.

Behaviors change as a result of TBI the “invisible injury”.  We all have different experiences!  Different experiences in life, different experiences before injury, and different experiences after injury.

  • Behaviors based life experiences
  • Accepting change
  • Unpredictable moments & days
  • Meaningless relationships
  • Daily struggles to exist
  • TBI cuts closest to core of existence

There is no easy way to say: “just accept this and move on”.  Accept what?  The thousands of things that have changed, the unpredictable moments, the unpredictable days, the relationships that appear meaningless, the injury that has cut to the core of one’s existence, the daily struggles just to exist … it’s not an easy injury to “just move on”. We all move-on in our own right.  Who is judging anyway?

If you’ve been one of the fortunate people that have been able to “just move on”, that’s great!  Many of us have been there! Many had previous TBI and kept up … moving on … until the last injuries!  The last or final injuries … stopped dead in the tracks with no easy fix like the earlier injuries. Now all the injuries have accumulated.

  • Many previous TBI & kept on moving
  • Thought everyone recovered spontaneously
  • TBI doesn’t seem bad when recovery occurs
  • Until … final injury
  • Last injuries … recovery difficult
  • Accumulated injuries

We all thought everyone could just move on, because we always did … until the injury that stopped the quick recoveries.  The quick recovery was the ideal.  TBI isn’t bad when you have a quick recovery.  The few deficits are easy to overcome.  TBI is not life-shattering or life-altering until recovery does not happen as we planned.

So what’s next but to trudge through the educational, healthcare, political, and legal systems.  Struggle with bureaucracies, society, or simply the ignorant or uneducated.  Is the internal struggle of self more difficult than the other systems one needs to struggle with?

Are these stressors harder to find self-acceptance when others cannot?  When self-acceptance occurs how can you move on when others have not accepted your differences?

images-121Young survivors of traumatic brain injury have many personal problems including supporting infants, toddlers, children, and teens.  Think about the timeframe in which this injury occurs.  Teens, twenties, thirties, or later in life!  Surviving TBI later in life is different than earlier in life.  While it’s never good to have a TBI but life’s chapters create different challenges.

Imagine enduring hardships from TBI at the end of life when responsibilities are less and it affects fewer relationships?  The relationships that are in place have been established over time.

These people become supportive and overall are mature individuals. Because these bonds in relationships have been established over years, this could also create a profound sense of loss among all relationships.

Yet, as aging occurs we are all guaranteed with 100% certainty that we will die one day.  Does that make it any easier with a TBI?  Absolutely not, it’s an unexpected injury … and everyone remains hopeful.

Why is rehabilitation withheld from those who need it most?  Rehabilitation for a broken foot or broken toe is about 6 weeks.  Rehabilitation for TBI is nonexistent or if one is fortunate maybe 2 weeks.

Survivors may have different tests including medical testing, endocrine testing, neuro-psych testing, and other things.  If no one helps put the picture to a complex puzzle together all these tests are meaningless.

The younger you are the more responsibilities one has in life.  Children need their parents.  They need their unconditional love and they count on their parents to support them: provide them with basic needs of shelter, food, love, and safety.  They need to be supported financially, emotionally, spiritually, and physically.  The younger the age the more complex life is.

If TBI survivors died at the time of injury the people that were once supportive would have said “She/He was an amazing person”  “He/She was a researcher”  “She/He was …and on and on”.

Because of the lack of education, instead they are saying: “He/She is a malinger” ; “He/She is a pain in the a**” ; “He/She is okay” ; “He/She is crazy” ; “He/She is nuts” ; “Don’t talk with him/her” ; “Do you know what he/she said?”; “Do you know what he/she did?”; and the comments are never-ending … until one’s life ends!  It’s not bullying.  It’s ignorance! It’s life!  It’s life with a TBI.

Have you experienced any of these situations?  How do you think it could have been better?

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15 responses to “Simple tips understanding brain injury: food for thought

  1. Madelyn Griffith-Haynie, MCC, SCAC

    February 1, 2013 at 5:27 am

    Your last point is most telling – to me. Yes! The “pretty speeches at the funerals” always make me cry – but never for the reason that others seem to be teary. I cry for the contrast.

    A time before – sometimes even a short time before, the individual in the coffin or the urn was a human being, and was spoken about with awareness of human limitations and foibles. With irritation, even.

    Now that they are gone, beyond the reality that there is an implied taboo about speaking ill of the dead, we rarely even focus on anything negative once there is no “more” to be had. Our entire mindset hyperbolizes, glorifying what was good as the irritating qualities begin to vanish from the speaking of those remaining — like the body of Alice’s Chesire Cat.

    BUT, as you say, if they LIVE, after a momentary hiatus granted for the amount of time it might take to get over pneumonia or a simple break in a single bone – the hyperbolic dynamic seems to go the other way. The GOOD seems to vanish in the rush to move on — as the toleration of another’s inability to keep pace seems to grow beyond containment, and those who claim to love as well as those who merely know the injured become cruelly impatient.

    Like I said – I cry for the contrast.

    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    – ADD Coaching Field co-founder –
    (ADDandSoMuchMore and ADDerWorld – dot com!)
    “It takes a village to transform a world!”

     
    • brain injury self rehabilitation (BISR)

      February 5, 2013 at 8:49 am

      Madelyn, I couldn’t have written this any better! With your experiences you are keenly aware of how the pendulum swings. Many never experience this, so are they more prone to be hypercritical? I think it’s those bumps in the road, or a continuous bump that help keep many at bay understanding others. Why do we need years of research to prove everything? Life experiences should help pave the road for others combined with research (when it exists). Take care and stay safe, Edie

       
      • Madelyn Griffith-Haynie, MCC, SCAC

        February 5, 2013 at 3:28 pm

        Because RESEARCH is **an industry**, and it must justify its existence or shut down, perhaps?

        Not that it is not *valuable* — it is simply not ALL — and some things cannot be quantified in the manner that is currently defined as “scientific.”
        ======================
        Below are the last few points from my first post on the ETHOS community website, entitled “I Do Not Genuflect” – it says it more strongly (at least, as strongly as I’m willing to say in print 🙂 )
        ———–
        When the definition of “evidence-based” confines the term to “double-blind, placebo-controlled, peer reviewed, journal published, scientifically replicable – consistent with the body of knowledge in the field,” I can’t help but wonder if those engaged in the pursuit of proof will ever glimpse Truth through that particular lens.

        The “controlled experiment” has many uses, but at bottom, forcing anecdotal report to genuflect at its alter is short-sighted.

        “Life is an uncontrolled experiment: confounded, confounding, and, above all, completely impossible to replicate—tragically so, and wonderfully so. I try to remind myself of that as often as I can. Sometimes it helps.” ~ Kathryn Schultz, The Self in Self-Help, Jan 6, 2013 New York Magazine

        xx,
        mgh

         
      • brain injury self rehabilitation (BISR)

        February 7, 2013 at 6:45 pm

        This is great! As much as we need scientific research, it certainly hold us back in progression. Decades pass before scientific research is proven. We need to start using more empirical data and observational information.

        There are definitely too many variables in life that are immeasurable and may falsify data. Everything and everyone is unique and can’t possibly be compared in every way. I love the quote that “Life is an uncontrolled experiment” that is “completely impossible to replicate”.

        I sure appreciate your feedback. This has given one something to really think about. Take care and stay safe, Edie

         
  2. Three Well Beings

    February 3, 2013 at 12:30 am

    It is an amazingly complex series of hurdles, isn’t it! Have you done any research into light therapy? It’s just something my friend is being introduced to through her TBI therapy. I don’t know if it’s experimental or has attained a more secure place in traditional therapies. I just thought I’d mention it. All the best, Edie.

     
    • brain injury self rehabilitation (BISR)

      February 5, 2013 at 8:22 am

      Thank you so much for suggesting light therapy. I will be researching further into this idea. I do know it’s helpful to open blinds in the morning to help those with sleep disturbances to keep a circadian rhythm in check. Personally, I have found UV tanning helpful once a month but there is the medical downside on that … but its balancing what works and what doesn’t for each individual. I can see how light therapy could work. I also know hyperbariac oxygen treatment works, but it’s costly and not covered by medical insurance for brain injuries even though it’s proven to work. Is everyone looking for a cure or is it that is keeps people employed, and a cure would not be cost-effective … another financial situation?

       
    • Madelyn Griffith-Haynie, MCC, SCAC

      February 5, 2013 at 3:30 pm

      Light Therapy is coming up in the Sleep Series – particularly relevent for TBI, btw!
      xx,
      mgh

       
      • brain injury self rehabilitation (BISR)

        February 6, 2013 at 8:43 am

        I will be checking the post out. Give me heads up when it’s posted. I’ve been behind on reading, researching and everything … but life goes on! What’s new?LOL I am interested in Light Therapy. Blessings, Edie

         
  3. Maria Tatham (Elizabeth Ott)

    February 3, 2013 at 12:47 pm

    Edie, this isn’t flattery, it’s sincerely meant. I think that things can be better for TBI survivors when they have advocates and educators like you. You know a lot and have the empathy from your own experience, and you are a trained nurse who can truly help. Some people have no one to help them get through, point them the right way, show them where to get additional help, discuss the problems involved so they don’t feel crushed and isolated.
    It is a crying shame that survivors don’t get ongoing care. It’s so sad – but I’m glad you’re here for them!
    The images you chose fit so well with all the problems you discuss.
    Love to you who are a survivor and helper,
    Maria

     
    • brain injury self rehabilitation (BISR)

      February 5, 2013 at 8:30 am

      Maria, I sincerely believe there are many healthcare providers that are consider “damaged” and not employable because the threat they could make a “mistake?” They could help so many by their own situations, but we learn never to reveal anything about ourselves to patients. I think that learned attitude keeps many from reaching out and being advocates. I hope in the future they will help because we need them! Every one needs someone and they deserve someone. These healthcare professionals know what to look for, but there always seems to be a financial piece of the puzzle and little volunteer work happens in this area for patient advocacy. That would be my dream for … volunteer patient advocacy. Hopefully in the future this will be a change we will see within and outside of our healthcare systems. Thank you for the compliment. Take care and stay safe, Edie

       
    • Madelyn Griffith-Haynie, MCC, SCAC

      February 5, 2013 at 3:31 pm

      I second Maria — whether it is flattery or NOT, it is absolutely true!! Love to BOTH of you!
      xx,
      mgh

       
  4. Maria Tatham (Elizabeth Ott)

    February 5, 2013 at 1:50 pm

    Edie, so some healthcare workers, who could truly help patients, are considered “unemployable” because they are “damaged”? So, I see, yes, a volunteer patient advocate system sounds good.
    Sometimes, we have knowledgeable and helpful friends and family members who can stand up for us, however some patients have no one to help them. I see where your heart is for this. You take care and stay safe too!
    Maria

     
    • brain injury self rehabilitation (BISR)

      February 6, 2013 at 8:41 am

      Hi Maria, You are right that many people have family or friends that could advocate. Often they don’t understand the need for advocacy until they are in a position themselves, hence they are unable to help or just don’t. Many never have anyone, and that’s that is a significant gap in the system. Of course, the explanation will be privacy and confidential issues. I think it’s the lack of advocacy and not the privacy or confidential issues … but that’s my opinion! I also left a comment for you under “Madelyn and Maria”. Blessings, Edie

       

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