Rolf B. Gainer, Ph.D., Diplomate ABDA, is the Chief Executive Office at Brookhaven Hospital and the Vice President of Rehabilitation Institutes of America. Dr. Gainer has been involved in the design and operation of treatment programs since 1977.
There's a new memoir coming out called To Love What Is: A Marriage Transformed by Alix Kates Shulman that does a wonderful job evoking so many subtle and complex emotions that involve caring for a spouse who has a brain injury. Take a look at this excerpt:
"He was catapulted him into a state resembling advanced Alzheimer’s, left unable to remember anything that happened from then on or to find his way home from across the street. Caring for him requires, as people always tell me, the patience of a saint.
My husband is a gentleman and a sweetheart. Since his social skills, long-term memory and delight in life are pretty much intact, he is charming and considerate with people he knew before his fall.
But when a new companion arrives, for the first few weeks, until her face begins to look familiar, the constant presence of a stranger at his elbow can provoke in him such bouts of agitation, cursing (disinhibition) and combativeness that many a potential companion has quit on the second day."
In this particular passage, the author writes about an incident where her husband–who has poor short-term memory–has erroneously reasoned that his young, attractive assistant is also his mistress. He can't explain her presence any other way, it seems. The predicament illustrates just how complicated TBI can be–it forces us into situations far outside of social norms.
To Love What Is underscores a strange paradox about brain injury–that ultimately, it takes a tremendous amount of heart to heal a head.
The military decided to up the value of disability payments to soldiers who experienced a brain injury. While the increase in compensation under the new guidelines for post-concussive and "mild" brain injuries represents a significant increase, in the long term view the enhanced payments do not adequately address the true costs of a living with a brain injury. The compensation for severe injuries increased, but that also falls far short of the lifetime costs associated with a brain injury. A study from the Harvard School of Public Health conducted by L. Blimes (2007) reported a lifetime cost range of between $8 to 17million. That is well above the $4.5-5million noted by Livneh and Antonak in 1997.
The University of Michigan reports: “nearly one out of five delinquent youths suffers from traumatic brain injury, which can contribute to wide ranging mental illness”. U of M interviewed 720 youths (ages from 11 to 20) in Missouri rehabilitation facilities and found that about 132 of the teens reported having a traumatic brain injury. The study also found that “these troubled teens had a significantly earlier onset of criminal and substance-using behaviors”.
Is it really a surprise? Traumatic Brain Injury can cause a host of behavioral problems. They may develop difficulty with Impulse control, self-regulation or self-control, over arousal, frustration tolerance, as well as problems in perception, and increased aggressiveness (just to name a few). So is it any wonder that individuals with brain injuries who go untreated experience difficulties with the law and end up being treated for mental health problems, in my humble opinion – not really.
The articles pop up on occasion–a football player here, a boxer there–and details the ongoing research that goes into sports-related concussions.
Recently the New York Times ran a feature on some NFL players who are donating their battered brains to science in an effort to help researchers understand the nature of repeated concussions. This is a good thing, sort of.
One of my big concerns that the piece reveals is that the NFL is conducting their own studies on concussions, which they plan to release in a couple of years. On first glance, it sounds noble and praiseworthy, but there's an ethical issue involved here. Should an organization that stands to lose so much be in charge of pioneering a study like this? Isn't this sort of like Philip Morris issuing its own studies on lung cancer? I'd be curious to learn what kind of protocols are in place to validate the studies the NFL is doing, and what, exactly, is being studied, but I don't hear any of this being reported.
If you're aware of any details about the NFL concussion studies, I invite you to email me at mmason (insert at sign) brookhavenhospital.com and share your knowledge.
In the current issue of the New Yorker magazine there is a story by Bill Finnegan of the suicide of a Marine, Travis "Tebeaux" Twiggs and the death of his brother, Will. The story tracks the plight of Tebeaux as an Iraq war veteran with PTSD who eventually takes his life after reaching out for help without receiving the helping hand he needed. Tebeaux was a decorated Marine, briefly treated for his PTSD and made part of the Wounded Warrior Battalion. He had his picture taken with President Bush, yet nothing was made available to keep Tebeaux, married and the father of two, from ultimately taking his own life.
What are we really doing to help soldiers with PTSD? The RAND Corporation report puts the number of soldiers and veterans with PTSD at 300,000. The military places the number at substantially less and conceals the suicides and mental health problems plaguing returning soldiers. But whatever the number is, what are we doing to help?
It's conference season time for all of us at NRI. We'll be presenting at a variety of locations (listed below) and invite you to stop by and visit if you're able:
Last week, while waiting for a train in DC's Union Station, I had a sobering moment.
I was sitting in a cramped cafe, finishing up my coffee, when a man appeared in front of me and forced me to do a double-take. He looked exactly like one of the brain injury patients, "Joe," we have here at NRI, but with a dozen tiny tells. Joe's doppleganger was wearing stylish hipster glasses, with a messenger bag slung over his shoulder. He was preoccupied with an incoming message on his Blackberry, and had a newspaper tucked under an arm.
The way the guy moved–coordinating so much so effortlessly–hinted at fluid brain function. To every one else in the cafe, he probably looked like an ordinary guy on his way to work, but to me, Joe's doppleganger was an incarnation of just how many seemingly small and inconsequential things get lost after a brain injury. The real Joe will probably not be able to coordinate holding a paper, eating a bagel, and texting at the same time. Joe can't hold down a job, so he doesn't ooze ambition like his doppleganger. And of course, without a job, there's no smart sportscoat, no Blackberry, no laptop.
We often hear about the millions of dollars it costs to care for a brain injury patient over a lifetime, but aren't reminded enough of the million small things that simply seem to float out of reach, the things without a price tag. A tip of the cap to Joe's doppleganger, wherever he is, for the helpful reminder.
This morning, I had the honor of giving a talk to the Congressional Task Force on Brain Injury in Washington DC. Congressman Bill Pascrell (NJ) gave me a wonderful introduction, and made some remarks about brain injury that surprised me with their sincerity and candor–not the kind of politically correct comments we’re accustomed to hearing from politicians, but the kind of comments from someone who is genuinely concerned about survivors and their welfare. I applaud all the good work that Pascrell, Congressman Platts, and the Task Force are doing to raise awareness about brain injury America.
After the meeting, I had an opportunity to have lunch with Susan Connors, CEO of the Brain Injury Association of America. We talked a bit about state head injury administrators and their roles in advocacy, and we talked about the BIAA’s hopes for greater funding and the new goals it has for the following years (which includes unifying the state chapters in a way that will create more consistency in information and advocacy work). It was the kind of talk that acknowledged the reality of economic hardships that America faces while still remaining focused on the greater goal–a better life for brain injury survivors.
It may be the combination of Pascrell’s comments, Susan’s commitment, and the lovely weather in DC today, but I think that brain injury advocacy is in good hands. All we need now are more hands.
I recently visited a potential patient who had to put a lot of effort into answering my questions only to get frustrated when the words he wanted wouldn’t come out. For example most of us can easily do addition and subtraction in our heads without breaking a sweat. However for this gentleman those neural pathways had been disrupted, making the task much more difficult, I could see the frustration build in his eyes, his body would tense, and finally he would utter his answer, only to immediately start shaking his head no… it was like “I know this isn’t the answer.. but I don’t know how to find the right one”.
Recent studies have shown that individuals with brain injury have to work their brain harder than someone without a brain injury. More specifically Gary Turner, Ph.D. and Brian Levine, Ph.D., compared executive functioning between brain injured and non-brain injured patients. They found that individuals with brain injury had a significantly higher rate of activity: their brain activity was .004% active while the controls showed .0008% activity conducting the same function.
Click here to read: Brain Injury Patients Cope by Using More of Their Brains
Although it received little notice, a recent article from the Denver Post has one of the most curious and damning bits of evidence involving brain injured troops. By requesting information on drug purchases, the Post discovered several key markers:
From 2003 to 2007, the Department of Defense indicated:
• Spending for Topamax, an epilepsy medicine now being used to treat soldiers with TBIs that could lead to seizures, nearly quadrupled in four years, from $5.6 million to $20 million.
• Spending for Ambien, a sleeping pill, doubled in four years, from $11 million to $22 million.
All three drugs are commonly used for the treatment of brain injury.
What conclusions can we reach about the data? More servicemembers are having seizures. More of them are having problems sleeping at night.
I have to applaud the Post reporter who wrote the article, but worry that much may have been lost in the editing. The Post didn't provide more meaty information–are the purchases of drugs increasing or decreasing? What kinds of trends can we look out for that might illuminate the situation?–but it is asking the right kinds of questions. The kinds of questions we should all be asking.
