Category Archives: Chronic traumatic encephalopathy

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“Brain injury survivors …”


“Brain injury survivors need to laugh at the things that happen. Even some of the most difficult times can be funny…at least when you reflect on what happened. Communication difficulty of various degrees occur with brain injury. This situation is an unfortunate communication barrier. I give details surrounding the situation so others can better understand what happens in the lives of brain injured survivors.” Edie, author, Brain Injury Self Rehabilitation

Brain Injury Self Rehabilitation

One of the resources that I have recently discovered is the “Brain Injury Self Rehabilitation” blog on WordPress! The blog is owned by Edie, a  Registered Nurse and member of Sigma Theta Tau International Honor Society of Nurses from Ohio, who is now a Traumatic Brain Injury (TBI) survivor.

Edie’s Story

Edie is a Rehabilitation Nurse that was assaulted at work. She eventually got treatment after nearly 20 years following her injury. She documented her journey through the American health care, legal, insurance, and Workers’ Compensation System showing what an ordinary American mother, spouse, nurse, and family had to go through before she had proper treatment.

She discusses how she restored her life through her determination and self rehabilitation. She indicates that she lives just 20 miles from world renowned healthcare facilities. After many twists and turns in her cold and complex case, and an ordeal that lasted for nearly 20 years, she finally got proper treatment 200 miles away from home!

Edie now shares her experience and educates survivors of Chronic Traumatic Encephalopathy (CTE), “Mild Traumatic Brain Injury” (mTBI) and Traumatic Brain Injury (TBI) about “Brain Injury Self Rehabilitation“. She speaks out to protect other nurses and healthcare workers, and advocates for patients through education.

Humor is Sometimes the Best Medicine!

Edie uses humor to maintain a level head even in dire circumstances. In a recent blog post titled, “Laughter as brain injury medicine – Permanent Hairdo? A Day in My Life. Keep Smiling!” she states:

“Brain injury survivors need to laugh at the things that happen. Even some of the most difficult times can be funny…at least when you reflect on what happened. Communication difficulty of various degrees occur with brain injury. This situation is an unfortunate communication barrier. I give details surrounding the situation so others can better understand what happens in the lives of brain injured survivors.”

I am already learning a lot from Edie’s posts on her “Brain Injury Self Rehabilitation” blog. I highly recommend that CTE, mTBI, and TBI survivors visit her blog to learn more. I will be reading her blog judiciously!

Read more: 

http://braininjuryselfrehabilitation.com/

There is Help for Battered Athletes and TBI patients!


A CT of the head years after a traumatic brain...

A CT of the head years after a traumatic brain injury

One of the doctors that has been at the forefront of the battle against traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE) is Dr. Daniel Amen. He has been working with athletes, military servicemen, and other brain trauma patients to provide a treatment regimen to help them to better cope with living with the effects of CTE and TBI — memory loss, dementia and depression. As Dr. Amen said recently, “My hope is that through increased awareness and education we can help these athletes before it’s too late.”

Since people with the CTE and TBI condition often do not have visible scars, it is hard for most people, including some physicians and other medical providers, to understand the extent to which short-term memory loss affects one’s ability to cope with daily living. Things that other people take for granted just takes much longer to do. Unless one is very organized, one can spend an inordinate amount of time looking for things that one needs on a daily basis. Just getting ready to leave the house for work or an appointment becomes a stressful  ordeal unless one has a routine that is not disturbed in any fashion.

Realization of the Consequences of Brain Trauma

It takes a while — maybe years for person with a CTE or TBI condition to fully understand that their brain no longer functions properly. Those that are lucky enough to have proper treatment may come to the realization sooner that those who do not receive treatment or worse still have to contend with skeptical or uncaring physicians and medical providers.

For instance, I have never had any neurological treatment or rehabilitation for the brain trauma that I sustained while working at Ameriprise Financial in July 2004. It took a number of years for me to realize that I had to take care of my own health rather than succumb to despair. I used my skills as a research analyst to search for articles on traumatic brain injuries so I could better understand what had happened to my brain and why I was experiencing short-term memory problems while my long-term memory was so crystal clear. In fact, I believe my creativity even increased as a result of the brain trauma resulting in a deluge of new and often very brilliant ideas. The only problem is that if I don’t write them down immediately,I would not be able to recall the  ideas after a short time. As I now sometimes joke that — my long-term memory is probably near genius level while my short term memory is significantly impaired. For someone that is particularly cerebral, with a background as a money market portfolio manager and an investment research analyst, one can only imagine my frustration with the situation. What I have essentially had to do is my own “self rehabilitation” using nutrition, naturopathic solutions, and coping mechanisms and systems that I have developed by myself which may not be the most efficient methods but nevertheless do work for me. Now I have the daunting task of going through an administrative hearing regarding the State of Washington‘s Department of Labor & Industries (L&I)‘s  premature termination of my medical benefits and I have to do it by myself, if I don’t get any legal help! A tall order for me but I am determined to go the distance to ensure that the State of Washington‘s Department of Labor & Industries (L&I) ensures compliance with workplace safety standards and more importantly, that L&I changes the way it treats workplace traumatic brain injury cases. A traumatic brain injury is not tantamount to a broken limb and should not be treated as such!

Coping with the Effects of Brain Trauma

Ultimately, one has to come to terms with the fact that the brain trauma has caused a fundamental change in one’s brain function. The best way to deal with the effects of the trauma is to accept it, the same way that one would accept the loss of a limb, and then find the best way to cope and live with it. It is not an easy journey coming to terms with the loss of brain function. High performance super athletes,  military servicemen, and intellectuals always like to perform at or above  a certain level of excellence.  It is very difficult and frightening for super-achievers that suffer a brain trauma to come to terms with the loss of a part or most of their  brain function. It is even more frustrating when one has to contend with all the pseudo-brain specialists that have never read a single pamphlet or sheet on brain science nor have any clue about the effects of CTE or TBI but think they know more than the brain specialists. Anabel Maya, a psychologist who is an expert on memory wrote an article titled “A Closer Look Into Memory” and she admits that she is fascinated by memory because of the amount of information that the human brain is able to store; however, she states that she does not completely understand memory — she is still learning about it!

Support of Family and Friends!

It is really important that people that have sustained brain trauma have support from their families and friends. Support also means understanding how the trauma affects the brain and how to help the person cope with the effects of the brain trauma. I am lucky to have the support of my family and close  friends and I will forever  be grateful to them. I would not have survived without their love and support! I have information on this blog that can help families to understand TBI and CTE and what role they can play to help their loved ones to cope and live with the condition.

You are not alone — there is lots of help!

Some people with a CTE or TBI condition receive treatment; however, there are a significant number of people like me that  receive little or no treatment and have to find ways to cope and live with the condition. The result of no treatment is despair and depression that eventually leads some to suicide! Some insurers like Zurich advise their clients to take precautionary steps to minimize workplace injuries, report injuries in a timely manner in order to start treatment soon after the injury occurs so that to that the employee recovers and returns to work resulting in lower worker compensation costs to the employer. Some employers don’t even bother to follow state mandated safety guidelines, do not report injury claims and time to ensure proper and timely treatment of their employees, and do not care what happens to the employee that has been injured due to their own negligence.  The only thing that matters to such employers is return to shareholders and management bonuses. The injured employee and their family be damned!They are much more interested in covering their tracks and paying the lowest premiums they can muster than doing the right thing!

However, there is help available.  Dave Duerson, Junior Seau and Ray Easterling did not need to take their own lives out of frustration, fear and despair! Most likely they could have been saved, if they had been under the care of physicians and other providers that specialize in the treatment of patients with CTE and TBI conditions.

Resources Available for Brain Injury Treatment

Amen Clinic: Dr. Daniel Amen of the Amen Clinic has a practice that focuses on helping former athletes,  servicemen and others that have sustained brain trauma. He has posted the article below on his blog to let people know that they need not commit suicide when there is lot of help available for them. You can visit his website to learn more and also for the contact information.

Brain Injury Research Institute (BIRI): Dr. Bennett I. Omalu, the forensic pathologist that discovered the presence of “Tau Proteins” in the brains of Mike Webster and other dead athletes and who coined the term “chronic traumatic encephalopathy” (CTE), and his partner Dr. Julian E. Bailes established the Brain Injury Research Institute (BIRI)  to continue their research on CTE and also to treat people that have sustained brain trauma and brain injury from multiple concussions.You can contact them by visiting their website.

Federal Agencies: The Federal Government has established  a dedicated section on its HRSA website to provide information and guidance to doctors, patients, and schools on dealing with Traumatic Brain Injury . The Center for Diseases Control (CDC) also has a section on its website that is dedicated to traumatic brain injury.

Military servicemen and veterans are returning from war with high incident rates of brain trauma which used to be generally diagnosed as post-traumatic stress syndrome. Now the Federal Government is on top of it game and military servicemen and veterans are receiving state of the art diagnosis and treatment for traumatic brain injuries. The Defense Departments’ Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (CDoE) was established in November 2007 to integrate knowledge and identify, evaluate and disseminate evidence based practices and standards for the treatment of psychological health and TBI within the Defense Department. The Defense and Veterans Brain Injury Center (DVBIC) serves active duty military, their beneficiaries, and veterans with traumatic brain injuries (TBIs) through state-of-the-art clinical care, innovative clinical research initiatives and educational programs.

State Agencies: Your best bet is to start with your State’s Brain Injury Association  of  America(BIAA). You can contact your State BIA‘s office by visiting the Brain Injury Association  of  America(BIAA)‘s website and then click on the map to select your own State.

Web: The internet abounds with information on brain injuries. You can do your own research using Google to type in keywords. Please see the tags on this page for examples of keywords that you can use for your search..

Brain Health Resources Blog: This blog has lots of information and links to help you to quickly find the resources that are available. If you have a question for me, kindly leave a comment and I will revert to you to guide you to find the information that you need.

Disclaimer: Please consult your own doctor first for guidance on your brain injury condition and treatment options.

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There is Help for These Battered Athletes

Shock, dismay and grief descended upon family, friends, and fans when news broke that former 12-time pro bowl NFL linebacker, Junior Seau had taken his own life.  The news came as shock to all, even those that were close to him, but this tragic story is becoming far too common.

Just two weeks ago, former Atlanta Falcons safety Ray Easterling, 62, shot himself in Richmond, Va.  His wife, Mary Ann Easterling, told news reporters that her husband suffered from depression, insomnia and dementia after his football career.  Another ex-NFL player Dave Duerson, a former Chicago Bears Pro Bowl safety, committed suicide nearly 15 months ago by shooting himself in the chest.  Duerson, 50, thought he suffered from dementia that fueled his depression. His suicide note included the request: “Please, see that my brain is given to the NFL’s brain bank.”

Post-death exams of Duerson’s brain showed he suffered moderately advanced evidence of chronic traumatic encephalopathy — a progressive degenerative disease related to repeated concussive blows. The disease has been linked to at least 18 deceased NFL players.

I just wrote about how serious a problem CTE is for athletes in contact sports and returning soldiers in last week’s newsletter and here we are again dealing with another heartbreaking story.  Junior Seau was a legend, but even legends cannot escape the ravages of chronic brain damage.  There is help for these athletes and anyone suffering from chronic traumatic brain injuries, depression, and irritability and memory problems.

I began studying the effects of football on brain health in 1999 when Brent Boyd, a former NFL player, came to the Amen Clinics.  After Anthony Davis came to the clinic in 2007 our work with active and former NFL players really took off when we partnered with the Los Angeles Chapter of the Retired NFL Players Association to perform the world’s largest brain imaging/brain rehabilitation study.

As part of the rehabilitation study we scanned the brains of 116 NFL players and found that 113 suffered brain damage and the level of brain damage was just awful.  People who have chronic, traumatic brain injuries, which almost all football players have because they get hit in the head thousands of times in their careers; have a much higher incident of depression and suicidal ideas and suicidal behavior.  Thirty percent of the players we studied had issues with severe depression.  That is four times the rate of depression among the general population!  Even worse, linebackers, like Junior Seau, who lead with their heads on the field, suffer the most significant damage.  The study showed patterns in damage to the front part of the brain and temporal lobes, under the temples and behind the eyes, which manage memory, mood stability and impulse and temper control.

The good news is the brains of contact-sport players and soldiers can be rehabilitated.  We have conducted three clinical studies with 116 active and former players from the National Football League here at the Amen Clinics and each study shows that it’s not only possible, it’s likely, that with a brain-directed health protocol, significant improvement can be experienced in decision-making, reasoning, depression, mood and memory.

Our studies found significant evidence that, fortunately, there are treatment protocols that can often reverse many of the symptoms caused by brain damage and improve brain function.

The studies include:

  1. Effects of Elevated Body Mass in Professional American Football Players on rCBF and Cognitive Function, Transl Psychiatry (2012) 2, eK, doi:10.1038/tp.2011.67.
  2. Impact of Playing Professional American Football on Long Term Brain Function. Journal of Neuropsychiatry and Clinical Neurosciences, J Neuropsychiatry Clin Neurosci 23:1, Winter 2011, 98-106.
  3. Reversing Brain Damage in Former NFL Players: Implications for TBI and Substance Abuse Rehabilitation. Journal of Psychoactive Drugs, 43 (1), 2011 Online publication date: 08 April 2011.

Junior may have damaged his pre-frontal cortex, which is responsible for decision-making.  Brain trauma symptoms can appear decades after the playing days and can include dementia, memory loss, violent behavior, obesity, mental illness and depression. And unfortunately, suicide is more common in people who have experienced brain trauma.

Playing football is a brain damaging sport and for those that are going to play it, my message would be to get your brain examined before you play and after you stop as well as any time you get a concussion.  The best way to prevent tragedies like these from happening aside from avoiding the things that are harmful to the brain, are early detection and treatment.  My hope is that through increased awareness and education we can help these athletes before it’s too late.

Source: http://70.32.73.82/blog/5758/there-is-help-for-these-battered-athletes/

Dave Duerson and Chronic Traumatic Encephalopathy (CTE)


February 20th, 2011

Dave Duerson, the former Chicago Bears safety and part of the famed 1985 Super Bowl team, committed suicide last week at the age of 50. He died of a self-inflicted gunshot wound, but he chose to shoot himself in the chest versus the head.

This was deliberate.

“He had informed (his family) at some point that he wanted his brain to be studied so people could learn more about the effect of brain trauma and so kids could play the game more safely in the future,” [Chris] Nowinski said.

Although he had deemed his life as intolerable, Dave Duerson nevertheless wanted to preserve his brain so that it could be studied posthumously for evidence of chronic traumatic encephalopathy (CTE), an insidious and progressive type of dementia that seems to be caused by repeated head trauma – i.e. the type that Duerson experienced during his professional football career.

Duerson’s life over the past several years followed a pattern similar to that of former Pittsburgh Steeler center Mike Webster. After retiring from pro football in 1990, Webster’s life became plagued by debt, depression, family turmoil, and eventually homelessness. Similarly, Duerson’s marriage fell apart and his once successful business interests faltered while the man himself became increasingly distraught at his own cognitive and emotional decline.

CTE is not a new phenomenon, but it has been largely ignored – or actively downplayed – until relatively recently.

Be sure to check out the podcast we conducted back in 2007 with Dr. Bennett Omalu, a forensic pathologist and neuropathologist who was one of the first researchers to step forward and actively publicize this disorder. You can listen to the entire episode here:

“Dementia of Football”: The Next Major Public Health Issue?

Source: http://intrepidinsights.com/2011/02/20/dave-duerson-and-chronic-traumatic-encephalopathy-cte/

Dementia of football the next major public health issue.


June 14th, 2007

On September 24, 2002, Pro Football Hall of Fame center Michael Lewis Webster died in Allegheny General Hospital’s coronary care unit at age 50. Known as “Iron Mike” during his playing years, Webster’s discipline and overachieving nature helped propel the Pittsburgh Steelers to four Super Bowl championships. But soon after retiring in 1990, Webster’s life became plagued by debt, depression, family turmoil, and eventually homelessness.

Through an entirely serendipitous set of circumstances, forensic pathologist and neuropathologist Dr. Bennet Omalu had an opportunity to conduct an extensive examination of Mike Webster’s brain shortly after his death. What Dr. Omalu found was astonishing. While Mike Webster’s brain did not show any outward physical signs of dementia, at a cellular level his brain resembled that of an 80-year-old advanced dementia patient.

Over the next 5 years, Dr. Omalu conducted post-mortem tests on additional former pro football players, and he began to notice an emerging pattern which seemed to indicate an entirely different form of progressive chronic traumatic encephalopathy. Termed “Dementia of Football,” this syndrome was very different from dementia pugilistica, or the boxers’ “punch-drunk syndrome.” In contrast, “Dementia of Football” tended to occur without the presence of any motor symptoms – which would explain why it would often be misdiagnosed or completely overlooked.

Join us in this fascinating conversation with Dr. Omalu where we discuss this newly emerging syndrome in detail and ponder what could very well be one of the next major public health issues to affect athletes – both amateur and professional – worldwide.

Click to listen to the Podcast.

Source: http://intrepidinsights.com/2007/06/14/dementia-of-football-the-next-major-public-health-issue/

Game Brain


Game Brain
Let’s say you run a multibillion-dollar football league. And let’s say the scientific community—starting with one young pathologist in Pittsburgh and growing into a chorus of neuroscientists across the country—comes to you and says concussions are making your players crazy, crazy enough to kill themselves, and here, in these slices of brain tissue, is the proof. Do you join these scientists and try to solve the problem, or do you use your power to discredit them?

By Jeanne Marie Laskas
GQ Magazine
X-ray image by Nick Veasay
October 2009

On a foggy, steel gray Saturday in September 2002, Bennet Omalu arrived at the Allegheny County coroner’s office and got his assignment for the day: Perform an autopsy on the body of Mike Webster, a professional football player. Omalu did not, unlike most 34-year-old men living in a place like Pittsburgh, have an appreciation for American football. He was born in the jungles of Biafra during a Nigerian air raid, and certain aspects of American life puzzled him. From what he could tell, football was rather a pointless game, a lot of big fat guys bashing into each other. In fact, had he not been watching the news that morning, he may not have suspected anything unusual at all about the body on the slab.

The coverage that week had been bracing and disturbing and exciting. Dead at 50. Mike Webster! Nine-time Pro Bowler. Hall of Famer. “Iron Mike,” legendary Steelers center for fifteen seasons. His life after football had been mysterious and tragic, and on the news they were going on and on about it. What had happened to him? How does a guy go from four Super Bowl rings to…pissing in his own oven and squirting Super Glue on his rotting teeth? Mike Webster bought himself a Taser gun, used that on himself to treat his back pain, would zap himself into unconsciousness just to get some sleep. Mike Webster lost all his money, or maybe gave it away. He forgot. A lot of lawsuits. Mike Webster forgot how to eat, too. Soon Mike Webster was homeless, living in a truck, one of its windows replaced with a garbage bag and tape.

It bothered Omalu to hear this kind of chatter—especially about a dead guy. But Omalu had always fancied himself an advocate for the dead. That’s how he viewed his job: a calling. A forensic pathologist was charged with defending and speaking for the departed—a translator for those still here. A corpse held a story, told in tissue, patterns of trauma, and secrets in cells.

In the autopsy room, Omalu snapped on his gloves and approached the slab. He noted that Mike Webster’s body was sixty-nine inches long and weighed 244 pounds. He propped up the head and picked up his scalpel and sliced open the chest and cracked open the ribs. He took out the heart and found everything he expected of a man who was believed to have died of a heart attack, as was the case with Webster. Then he made a cut from behind the right ear, across the forehead, to the other ear and around. He peeled the scalp away from the skull in two flaps. With the electric saw he carefully cut a cap out of the skull, pulled off the cap, and gently, like approaching a baby in the birth canal, he reached for the brain.

Omalu loved the brain. Of all the organs in the body, it was easily his favorite. He thought of it sort of like Miss America. Such a diva! So high-maintenance: It requires more energy to operate than any other organ. The brain! That was his love and that was his joy, and that’s why his specialty was neuropathology.

Omalu stared at Mike Webster’s brain. He kept thinking, How did this big athletic man end up so crazy in the head? He was thinking about football and brain trauma. The leap in logic was hardly extreme. He was thinking, Dementia pugilistica? “Punch-drunk syndrome,” they called it in boxers. The clinical picture was somewhat like Mike Webster’s: severe dementia—delusion, paranoia, explosive behavior, loss of memory—caused by repeated blows to the head. Omalu figured if chronic bashing of the head could destroy a boxer’s brain, couldn’t it also destroy a football player’s brain? Could that be what made Mike Webster crazy?

Of course, football players wear helmets, good protection for the skull. But the brain? Floating around inside that skull and, upon impact, sloshing into its walls. Omalu thought: I’ve seen so many cases of people like motorcyclists wearing helmets. On the surface is nothing, but you open the skull and the brain is mush.

So Omalu carried Mike Webster’s brain to the cutting board and turned it upside down and on its side and then over again. It appeared utterly normal. Regular folds of gray matter. No mush. No obvious contusions, like in dementia pugilistica. No shrinkage like you would see in Alzheimer’s disease. He reviewed the CT and MRI scans. Normal. That might have been the end of it. He already had a cause of death. But Omalu couldn’t let it go. He wanted to know more about the brain. There had to be an answer. People don’t go crazy for no reason.

He went to his boss, pathologist Cyril Wecht, and asked if he could study the brain, run special tests, a microscopic analysis of the brain tissue, where there might be a hidden story.

There was nothing routine about this request. Another boss might have said, “Stick with the protocol,” especially to a rookie such as Omalu, who had not yet earned a track record, who was acting only on a hunch. But Wecht was famously never one to shy away from a high-profile case—he had examined JFK, Elvis, JonBenét Ramsey—and he said, “Fine.” He said, “Do what you need to do.”

A deeply religious man, Omalu regarded Wecht’s permission as a kind of blessing.

*****

It was late, maybe midnight, when Bob Fitzsimmons, a lawyer working in a renovated firehouse in Wheeling, West Virginia, got a call from the Pittsburgh coroner’s office. It was not unusual for him to be at the office that late; he was having a bad week. He struggled to understand the man’s accent on the phone.

Read Morehttp://www.gq.com/sports/profiles/200909/nfl-players-brain-dementia-study-memory-concussions#ixzz1KiJHRyIP

Senate Juciary Hearings on NFL Player Head Injuries