WESTBOROUGH, MA March 15, 2016 In a published article headlining the BBC web pages the NFL has acknowledged that a link exists between repeated concussion and chronic traumatic encephalopathy – a deadly brain disease resulting in depression, memory loss, and erratic behavior. Only 50 days ago the NFL’s hired “expert” Mitch Berger, M.D., a neurosurgeon claimed that no link had been established between hits in football and the chronic brain disease leading to death.
This is the first time the NFL has acknowledged that such a link exists. Why are they now acknowledging what science has accepted years ago?
In Boston, neuropathologist Dr. Ann McKee unequivocally states that a correlation between concussive and subconcussive blows to the head has resulted in CTE in 90 of 94 brains she has examined – all from NFL players who have died and donated their brains to the Boston University Brain Bank. “The Boston Globe features this story as well today” according to Michael Sefton, Ph.D. “I have heard Dr. McKee and her colleagues report these findings since they examined the first series of brains including the brain of former N.E. Patriot Junior Seau who committed suicide shortly after his retirement from football.” The link has been well established for over 5 years but denied by NFL medical experts and league president Roger Goodell. The NFL Player’s Association sued Goodell and the NFL for hiding the dangers associated with concussion in 2014. The major motion picture Concussion starring Will Smith as real life physician Bennet Omalu was overlooked for an Oscar nomination in 2015. Nevertheless, the movie brought many of the NFL’s secrets about concussion out for all to see.
This link will take the reader to the BBC report.
I am reading Concussion – the novel by Jeanne Marie Laskas upon which the film starring Will Smith is based – released on Christmas day 2015. Smith portrays Dr. Bennet Omalu – forensic pathologist who first published the startling details of changes in the brains of those who suffer repeat head trauma. I am struck by the David and Goliath nature of the task – bringing medical discovery to the mainstream marketplace and the adversarial response of the medical establishment and the corporate giant National Football League.
There are still people in the brain injury field who attempt to discredit Dr. Omalu and the discovery of chronic traumatic encephalopathy. Indeed, the affliction did not begin with NFL football. I am sure over the years people with repeated concussions and subclinical injuries exhibited similar pathology when their autopsied brains were studied. Aging boxers have been known to exhibit soft neurological signs even Parkinson’s disease. An early study may have chronicled their symptoms as a common sequelae of boxers who experienced a career of getting blows to the head. Dr. Omalu implored the medical establishment to take notice of the incidence of depression, substance abuse and suicide among retired NFL players that may be correlated with the findings from autopsy studies of players who died as middle-aged men.
I have observed first hand just how difficult it has been selling concussion management to schools, coaches, and athletic directors for over 15 years. In 1993, my interest in mild traumatic brain injury was first set in motion by a series of cases that were referred to me by a group of physicians with whom I was associated. I collected data for several months using emergency department statistics to come up with numbers of persons who were treated for mild traumatic brain injury. I was interested in pediatric patients. What I found in review of months of emergency department visits was that many cases were not coded for ‘brain injury’ because of other afflictions like lacerations, fractures, and more.
What’s more unless someone were brought into the emergency department with altered mental status or unconscious from head trauma the true incidence of injuries to the brain were not carefully recorded. Arguably, the reason for this was a tendency to wrongly believe that in the absence of a documented loss of consciousness there was no reason to think brain injury nor was there any real concern for those few cases who were seen for concussion – as long as there was no loss of consciousness. Yet I was seeing cases from car crashes, falls, and football injuries that were having prolonged recovery times who were never diagnosed with mild TBI.
The squeaky wheel – gets a referral
For those patients who managed to get referred to the neurologist or neuropsychologist the symptoms they experienced were debilitating and often quite severe. It was not always linked back to their concussion – sometimes addressed as psychological or even psychosomatic in etiology. We began to see that a subset of concussion or Mild TBI cases went on to have a very unexpected set of symptoms including headaches, sound/light sensitivity, poor concentration, mood changes, and more that lasted for weeks and months. 5-10 % of cases of concussion remain symptomatic 8 weeks after first becoming injured and require supportive therapy.
What is now diagnosed post-concussion syndrome or PCS was frankly dismissed as a psychiatric illness like depression or anxiety or even an attempt at malingering as an intentional attempt to gain compensation years ago. PCS has no visual markers on computer brain scans or currently available lab tests. Like concussion it is an invisible injury that renders many people unable to work. Headaches, neck pain, fatigue, visual changes, irritability, sensitivity to sound and light, depression, and poor sleep hygiene were common.
Some physicians even stated “the symptoms would likely get better once the law suits were settled” when making a referral to me. Over 20 years later, I sometimes meet with same misattribution but in general there is greater understanding of the potential long-term effects of concussion. Omalu warns us that repeated injuries have a cumulative impact on aging brains. His serendipitous findings has raised awareness of the neurologic malfunctioning that may take place when athletes are exposed to repeated blows to the head while playing football. Many have gone on to commit suicide.
I was fortunate enough to be invited to the prescreening debut of the film Concussion a few days before it opened in Boston. It was sponsored by MomsTEAM. I was introduced to Brooke de Lench, Executive Director of MomsTEAM, Institute of Youth Sports Safety. He blog post was published in the Huffington Post the week before the film’s release. I enjoyed the film and found it a compelling caveat to my current knowledge and what I know to be true.
Sefton, M. (2014). Postconcusive Symptoms: Lingering symptoms following concussion. Blog post: https://concussionassessment.wordpress.com/consultation/post-concussion-syndrome-pcs/. Taken December 26, 2015.
de Lench, B. (2015) Why I’m not a football apologist. Blog post: http://www.huffingtonpost.com/brooke-de-lench/why-im-not-a-football-apo_b_8855362.html. Taken 12-26-2015
WESTBOROUGH, MA January 20, 2015 The impact of dementia is no greater than on those who remain behind to care for those afflicted with dementia. Typically, this may be a singular spouse who has chosen to care for their loved one through the insideous stages of dementia. Often in direct opposition to adult children, who may be intellectually dispassionate about what should or should not be done for the affected parent. This can take an enormous toll on the health of the surviving spouse who is often filled with guilt and sadness as they witness their life partner slowly fade away alone and often without substantive, hands on support. No greater sense of despair and futility exists as when the declining husband or wife can no longer remember a devoted caregiver or the memory of a shared life. Even worse is the tangle of doubt over what more can be done. Their futility is painful to see for those who provide care for the patients and the caregivers.
Dementia and Aging
Dementia is a disease that most people have heard something about. There are several variants of the disease including Alzheimer’s, Lewy Body, frontotemporal, and vascular dementia just to name a few of those more prevalent. Most know the cluster of functional changes that occur with the slow but progressive loss of neurocognitive function that often starts deep within the brain in the 6th or 7th decade of life. It starts with something as benign as forgetting a conversation after just a few minutes or being momentarily lost in a familiar place in town. As the condition progresses, patients are rendered more forgetful, lose appreciation for tasks like paying bills, personal hygiene, eventually unable to recognize loved ones and care for their own basic needs. As with any life changing sign of debility it is often difficult to admit and usually more difficult to address. Denial is a common first reaction when dementia is suspected. And feared.
There are many myths associated dementia that are worth pointing out. First, old age and dementia are not synonymous. Patients always say to me “what do you expect I am 82 years old” when I first begin the assessment process. Research according to the APA, has shown in the right environment memory should not fail solely on the basis of age. Next, there are many conditions that mimic dementia but are fully treatable if addressed sooner rather than later. Arguably, depression, for example, often mimics dementia because of the associated change in attention memory, and behavior. It is far more prevalent than Alzheimer’s and has a very high rate of treatment success. The third myth is that there is nothing that can be done to stave off the mental inopertivity of senility. Wrong. But one needs to take responsibility for personal well-being long before the grip of dementia has begun unraveling one’s neurocognitive infrastructure. This includes regular exercise, mental stimulation, nutritional balance, and regular social interaction. It would not hurt to continue working or volunteering just to keep yourself in physical and cognitive shape. And finally, dementia is not life’s inevitable end point – whatever the age. 80 is the new 70 – people are living longer. There are currently 96,000 centenarians in the United States. In 30 years there will be over one million people who are over the age of 100.
Caregivers of dementia sufferers themselves suffer greatly. The daily care of someone with dementia drains the emotional reserve needed to replenish the “self” unless the depleted caregiver can find a healthy, restorative balance. The surviving spouse is sometimes under great stress to keep a loved one in his home – out of a nursing home. They anguish with each dying day in witness of a withering of human spirit – once father. The decision to admit one’s spouse to a dementia care facility conjures up images of the locked wards, vitriolic nurses, and exploitive, uncaring staff – another myth germinated in the guilt and self-recrimination of husbands and wives, and families who have forever tried and failed to slow the disease. Signs of caregiver burnout include sleep disturbance, irritability, being on edge, anxiety, unrecognized anger, and personal neglect. Eventually, the stress associated with being a caregiver will errode whatever well-being may be left unless supoprt and balance can be found. No easy task – especially when a selfless spouse wants only to have things the way they were.
In truth, long-term care facilities are equipped to take care of someone with dementia with a round the clock team of nurses and rehabilitation therapists. Making the decision to admit the demented family member may be aided by a family physician, knowledgable friend, or trusted therapist. Day treatment programs in many areas around the country provide temporary respite. They are a good first step in diminishing caregiver fatigue. They offer free time to caregivers for restoration of empathy and the needed emotional refueling that comes from seeing friends, family, or dinner out, or a Sunday mass.
The best way to handle a situation like this is to surround oneself caring friends. It is okay to talk about how difficult it may have become. It is not a betrayal to feel angry inside or to reach out to family for respite care. The financial concern over caring for a patient with dementia is very real. It is expensive care to get and not readily available across the country or elsewhere. Some hospitals or clinics offer free dementia care workshops or support groups that can provide helpful information and knowledge that you are not alone. Learn what services are available in your area. Talk to people and restore your self and believe that you are worthy of a rest – if even a short one.
REFERENCE: APA (2015) http://www.apa.org/pi/aging/ memory-and-aging.pdf. Taken 1-18-2015.