A Broad Problem

Brain injuries are one of the most misunderstood, misdiagnosed, and underfunded neurological conditions that can effect a person. This condition is often triggered by an event, such as a blow to a head or a puncture that injures the brain. However, long after the brain is considered healed, the effects are a chronic neurological disease.

Gary, a survivor of traumatic brain injury that happened 25 years ago, explained it as akin to dropping an apple. When you drop an apple, it seems OK initially, but after time a bruise begins to spread. The more time that goes by, the more that bruise spreads, deepens, and effects the ageing process. The same thing happens with the brain after an injury is sustained – you may not see the damage right away, but it is there and it can affect other things later on down the road. A well known example of this is Teresa Heinz Kerry who suffered a seizure due to latent effects of a concussion she had in 2009.

The Center for Disease Control (CDC) estimates that 1.7 million children and adults in the U.S. Sustain a traumatic brain injury (TBI) and there are a further 795,000 that sustain acquired brain injuries (ABI) each year. This means that there are currently 3.1 million individuals in the U.S. that must live with lifelong disabilities as a result of TBI and a further approximately 1.1 million have a disability due to a stroke.

Types of brain injuries

There are two main types of brain injuries, traumatic brain injuries (TBI) and acquired brain injuries (ABI). TBI is broken down further into two categories, penetrating head injuries and closed head injuries. Penetrating injuries occur when an object enters the brain. This causes damage to a specific area of the brain around the injury. The other type of TBI is called closed head injuries, and these are sustained when there is a blow to the head, such as during an accident or sporting event.

ABI overlaps a little bit with TBI. This condition describes brain injuries that are acquired after birth from either a traumatic injury, such as in TBI nontraumatic injuries, such as strokes, infection hypoxia, or any other number of external sources.

No matter which type of head injuries that is sustained, it can result in bruising of brain tissue, bleeding inside of the brain, large or small lacerations and nerve damage. More damage can occur either along with the injury or because of the primary damage, as well. This secondary damage comes in the form of swelling, fever, seizures or an imbalance of chemicals.

Symptoms

A person living with a brain injury can show many different symptoms that range from very mild to very severe. A person with mild TBI may remain conscious or they may experience a period of unconsciousness lasting from a few seconds to minutes. They may also experience any or none of the following as well:

• Headache

• Confusion

• Light-headedness

• Dizziness

• Change in sleep patterns

• Behavioural or mood changes

• Blurred vision or tired eyes

• Ringing in the ears

• Bad taste in the mouth

• Fatigue or lethargy

• Trouble with memory, concentration, or thinking

A person that is experiencing moderate to severe TBI may show similar symptoms as a person living with mild TBI. However, they also may show additional symptoms that are much more difficult to deal with. These symptoms include

• Headaches that worsen and do not go away,

• Repeated nausea and vomiting,

• Convulsions or seizures

• Inability to awaken from sleep

• Dilation of the pupils

• Slurred speech, weakness and/or numbness in the extremities

• A loss of coordination, increased confusion, restlessness or agitation

These symptoms are chronic, brought on by a slow, irregular, progressive cascade that merely starts at the injury. It is because brain injuries progress in this way that they are beginning to be treated as chronic diseases (Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. Journal of Neurotrauma 2010;27(8):1529-40). Education and disease management must be kept up, otherwise the damage already done to the brain could worsen or the individual’s life that the injury has touched could continue to downspiral.

Currently the group that are most effected by TBI are males 18 – 25. This is because they are more likely to be in a situation that leads to injury. Following this group, the next highest risk group are children age 0 – 5 due to their natural clumsiness. The third largest group are the elderly. However, the landscape is changing. Society as a whole has been more aware of injuries sustained in sports, and sports medicine has come a long way. Now, when a player sustains an injury, they are often held back a little longer to allow the brain time to heal. However, changing demographics might soon play apart in this changing landscape as well. There are an increasing amount of elderly, and their group numbers could sustain a higher rate of brain injuries resulting in problems further down the road.

How you can help

The statistics presented in the beginning suggest that many of us have a strong chance of knowing someone that has to deal with the fallout of a brain injury on some level. This calls for a community support and outreach so that we may reach an understanding of what happens with regard to a brain injury, how we can help each other heal quickly and as fully as possible, and lend support to those immediately surrounding the survivor. Luckily, there are a few different roles you can play.

Support

A person that sustains a brain injury undergoes changes well after the incident that causes the injury. The caregivers are the primary support for the person suffering from the implications of a brain injury, and their role is very understated. Rosemary Rawlins highlights this with her story shared on Insanitek.

There’s a deeper emotional layer to this in the real world. Here’s what it was like for me. Immediately after Hugh’s traumatic injury, I struggled with shock, grief, and overwhelm. I was elated when he lived, but then came the radical changes in ability and behavior as his deficits revealed themselves. It felt as though my husband was a completely different person, as if he had died in the accident and someone else took over his body. My loss was compounded by guilt for thinking this way, so I didn’t tell anyone about how I felt. As I tried to keep all the pieces of my own life together, (parenting, home, work) I was immersed 24/7 in this TBI world that devoured my heart, mind, and body. All of this happened right at the time when Hugh most needed my stability, help, and understanding.

However, this extends to parents of small children, too, as Laura Wagner-Hall discussed in a phone interview. Due to a medical condition where the nutrients were being split between the lungs and stomach, Laura’s son, Eric, had a seizure at two weeks old. Sometime between second and third seizure, he had a stroke.

When we got to Riley, the neurologist told me that he would be a vegetable. He wouldn’t be able to live long, he wouldn’t be able to talk. She basically told me to give up on my son. I didn’t. By the time he was three, he was walking with a walker, he was talking, using sign language, going to school… and even riding horses. He was doing everything I was told he would never be able to do.

However, the effects of the stroke and resulting brain damage were long lasting. Later on in life, her son had more complications and passed away.

Caregivers are the primary source of support for survivors a brain injury. However, these caregivers also need a network of support. There are several places you can turn to for advice, such as Rosemary’s blog on BrainLine.org, your local support groups of the Brain Injury Association and even support groups at your local hospitals.

Advocacy

An advocate is the voice of hope, help, and ultimately healing. They speak for the survivors and the caregivers in anyway they can. This could be by educating people, by finding information for those immediately affected by the tragedy, or even by standing up in the courts on behalf of the survivors and their families.These advocates come in many forms. Tim Hoffer, for example, shared his thoughts as a survivor on the matter.

I realize that I will never be quite the same as I was before, but working in therapy has done a lot to help me get back to my family and job. I am actively involved in brain injury support groups and visit my therapy unit on occasions. I am aware enough now to see how therapy does help those recovering from TBI. Also, I see how those suffering from TBI and have not had the access to the therapy that I received are still living with a deficit that could or can still be addressed with this type of therapy.

Alan Neuenschwander, an advocate in Fort Wayne, Indiana noted that advocacy is a wide area that just about anyone can contribute to. All you need to do is be able to strive for understanding, then commit to educating others, reaching out to support those in need, and not be afraid to say “please help”. Understanding comes from education and research, while support can be emotional or financial.

Education

Education overlaps with both advocacy and research, but it is an essential component to developing a support base for survivors of brain injuries and their support group. While there is much to learn, you can start with the attached documents provided by Neuenschwander to further our education. You can also visit sites like the Brain Injury Network or Traumatic Brain Injury and Neurological Rehabilitation Institute for more information about what is the most pressing need that needs to be discussed with current events and policies coming out of Capital Hill.

Research

Brain injury research and care have developed quite a bit over the last few years. However, there is still a need to research more methods to stop the secondary injuries from occurring and spreading after an accident. There needs to be more push to look for new technologies and new ways to answer old questions such as “how can we heal the brain”.

Financial aid

Survivors, caregivers, and researchers all need money to see this problem through to the end. Medical expenses can be astronomical from the outset, then compounded with rehabilitation and return visits. With families being under constant financial strain, they need all the understanding and help they can get. Then, of course, research can not subsist on good intentions alone. Research is put into prevention, outreach, and healing; all areas are equally important and are constantly in need of more resources to help deliver hope and healing to those that affected. You can help by donating your time or contacting your local support groups and offering a donation.

I am working on a series of crocheted brain hats that I will donate a portion of the profits to Defense and Veterans Brain Injury Center (because I’m a reservist and care about my fellow brothers and sisters in the military) and Hydrocephalus Association.

Insanitek is also working on a brain injury graphic which will soon be available for purchase in the Insanitek store. A portion of the proceeds go to the Brain Injury Association.