Adult Traumatic Brain Injury for Survivors of Brain Injury

How Do I Find Out How Severe My Brain Injury Is?

Your recovery will strongly depend on whether your injury is “mild, moderate, or severe.” Doctors determine this based on how long you were unconscious or unresponsive at the time of the injury. They also look at whether you were unable or only partly able to form new memories immediately before, during, or after the injury. Doctors call this posttraumatic amnesia. This amnesia differs from everyday memory problems like forgetting to call a friend. Doctors also look at whether you were disoriented and confused at the time of injury, and how long this lasted. Stress can also cause people to be confused, disoriented, or have trouble remembering what is happening. In some cases, it can be difficult to sort out what changes in thinking, emotions, or behaviors are due to stress versus brain injury itself. In these cases doctors will still continue to help you with the symptoms or problems, even if we don’t know where they are coming from.

What Will My Recovery Look Like?

Brain injuries are like fingerprints, and each one is different. Recovery, too, is different for each person and depends on the type of injury and how severe it is. Your medical provider will let you know when it is safe to return to activities. After mild brain injury there may be some symptoms immediately or soon after the injury; however, most people fully recover within days to weeks. Some people with milder injuries will return to work or school soon after the injury, and involvement in these activities can be very important in the rehabilitation process. Accommodations are changes to the work or school day, such as having extra time to complete tasks, or testing your knowledge in a different way. Accommodations are designed to remove limitations caused by brain injury, and make it so that you can work around the brain injury. Accommodations level the playing field so that you are not unfairly limited because of your injury in being able to do the work you are asked to do. Talk with your doctor about whether accommodations would make sense in your situation. There is usually a formal process to obtain accommodations, which may involve legal consultation. While almost everyone recovers from a single concussion or mild brain injury within days, the time it takes to heal also depends on the number of brain injuries one has experienced in a lifetime, and other conditions that may exist. For symptoms that stick around after a mild brain injury, it can be beneficial to have a “neuropsychological assessment” to better understand what contributes to symptoms and to get some recommendations on how to deal with the symptoms.

In general, military personnel and veterans seem to have symptoms that last longer than civilians. Many veterans have more than one medical problem, such as chronic pain, medical conditions, posttraumatic stress, trouble sleeping, depression, or substance use. These problems may make it harder to get better from symptoms that were initially caused by any one problem, such as traumatic brain injury (TBI).

Military and veterans who experience a milder brain injury should remember that with proper treatment, improvement is likely. People with more severe injuries will often continue to participate in treatment, including recreational activities with supports, following their injury. Recreational activities can be particularly important for retraining the ability to work well with others, improving your mood, managing your emotions, and for practicing memory and attention strategies. In general, after your doctor says it is safe to do so, activities such as spending time with others, attending outings or treatments, and participating in chores when safe to do so can all help recovery. You can time these activities so that they happen at a time of day when you are least fatigued. It is important to ask your doctor about any safety concerns for resuming activities.

What If I Feel Like I’m Getting Worse?

Return to your health-care provider if you notice worsening in symptoms. True worsening of symptoms directly due to brain injury is rarely due to a worsening of the injury itself. Instead, worsening in symptoms is usually because of poor sleep, physical pain, more stress, or worse mood, and does not mean that further injury is occurring. To be on the safe side, check with your doctor to make sure there is not an underlying medical condition that could require care.

If you are receiving treatments for brain injury and it doesn’t feel like you are doing well, it is very important to be up front with your doctors about your feelings, including what helps you during your treatments as well as your goals, so that they can have a chance to change the treatment, if possible, to accommodate your preferences. They may also be able to clear up any misunderstandings that arise.

You may also feel like symptoms are getting worse (for example, you are getting more tired) as you get involved in more challenging tasks like work and school. This is very normal and the symptoms often improve gradually over time as you adjust to the new situation. Just remember that people usually get better after a TBI, and not worse.

People have noticed (or I’ve noticed) some changes in my thinking (like my ability to remember new things), and my emotions, behaviors, and how I interact with others following my brain injury. What are some of the changes that people can have, what causes these changes, and what can I do about them?

Some common cognitive changes (changes in thinking) seen after brain injury include trouble with learning and memory, trouble concentrating, slowed thinking, speech and language changes, trouble multitasking, trouble filtering out information that doesn’t seem relevant, and trouble making decisions. Recovery can take longer if a person has had multiple mild brain injuries over a brief period of time. For a person who has had a severe injury, some changes may be lifelong.

Emotional and behavior changes seen after brain injury can include trouble “filtering” or restraining emotions or thoughts one would normally avoid articulating, feeling less patient, mood swings or depression, irritability, crying more, wanting to isolate, having trouble with healthy decision-making, feeling as if people are getting on one’s nerves more easily, trouble in relationships with others, and not taking care of oneself (including grooming and hygiene). Some people have difficulty getting started on or completing activities (this can look like lack of motivation, not maintaining interest in activities you’ve enjoyed, or not sticking with goals) due to brain injury. It is important to remember that these changes can also be caused by other things, like stress.

Your doctor may be able to tell you whether the changes in thinking (such as memory), emotions, and behaviors that you are noticing are directly due to damage to brain tissue, or due to other causes. The stress that goes with life changes after brain injury can cause cognitive, emotional, and behavioral changes, and you may find that people get on your nerves more easily. Changes to sleep patterns or physical pain after injury can also cause people to have concentration and memory problems. Some people find that after brain injury they need to develop new coping skills and ways of dealing with frustration. A therapist who specializes in cognitive behavioral therapy (CBT) can help you get “unstuck” and change negative thinking and communication patterns.

What Are Some Common Concerns That Other People Have in Coping With Changes After Brain Injury?

Some people worry that they will not be able to get the help that they need, that life does not hold much hope, or that things will get worse. Stay positive. No one said this recovery process would be easy, but most brain injury survivors will tell you that staying positive can only help deal with tougher days. You will be able to deal with things more easily with more practice. It is important to remember that tomorrow your ability to achieve your goals may be better than today as your brain heals and as you learn new coping strategies. Also, remember that brain changes from TBI can actually lead to decreases in motivation. Realize that your brain is doing this but that you don’t have to be defined by it. There are many people out there who have experienced a brain injury, and who have gone on to have success related to their job, school, or personal lives after brain injury. The way you talk and think about your recovery affects the way you feel about it, so it’s important to keep moving forward.

It may be tough to cope with the responses of others to your injury, or changes in relationships, like loss of intimacy. People can feel as though they have let their family or partner down, or you might find yourself using negative- thinking traps, such as “labeling,” where you tell yourself that you are now “lazy” or “unintelligent” since the injury when in fact this is NOT the case. Sometimes brain injury survivors use “all-or-nothing thinking” after a brain injury. This happens when people believe that if they can’t do everything the same as they did before the injury then the outcome will be terrible.

This “all-or-nothing” thinking trap also happens when people believe that they cannot return to having a productive life unless they can do as well as before the injury. People are often able to do something just as meaningful after the injury. Many people with brain injury have instead tried to engage in more healthy thinking (“I would prefer to work, but I can have other sources of meaning or be productive in other ways”).

Sometimes people get stuck in making unfair comparisons to other individuals with brain injuries if they do not improve as fast as others. It is helpful to remember that brain injuries are like fingerprints and no two are the same; the only fair comparison is between “you” and “you.”

What Are Some Helpful Thoughts and Coping Strategies ThatCan Keep Me Moving Forward in My Recovery?

It is important to focus on all you have accomplished in your recovery since the injury (look forward, not backward). Many survivors have found that focusing on self-care, such as getting enough sleep and getting involved in pleasant activities, can be very helpful in moving forward. Try to challenge “should” statements, such as “I am supposed to be employed right now” or “I ought to remember everything.” If you have always been an independent person, it can be very difficult to challenge unhelpful thoughts such as “I should not need help” or “I am a failure if I can’t be self-sufficient.” A therapist can help you do this. Therapists will help people to come up with alternative, balanced statements, such as, “I would prefer to work, but I can have other sources of meaning or be productive in other ways” or “People with medical conditions sometimes do need assistance.” This might be a time to reevaluate your value and self-worth based on the type of person you are and other ways you participate in the lives of others. “Big-picture thinking” can be helpful (for example, saying to yourself, “I am not good at details now because of the brain injury. Instead, I will help people focus on the big picture and on relationships”).

What Types Of Treatments Are Recommended After Brain Injury?

Rehabilitation is a set of treatments that focus on the medical, physical, cognitive (such as memory and attention problems), and emotional and social changes that can occur after TBI. Rehabilitation helps teach people how to compensate for problems, set realistic goals for recovery that people can successfully meet, and teaches people to be safe in their environments. Participating in a rehabilitation program is something you can be proud of because it involves a lot of work and patience.

Everybody responds in their own way to rehabilitation. Some people after severe TBI have extended stays in the hospital and others get rehabilitation through routine medical appointments. People who experience more severe injuries may benefit from rehabilitation that involves an overnight stay in a hospital for several weeks to months. Many brain injury rehabilitation programs involve spending the night at a hospital for days to weeks and getting help from multiple types of doctors there.

Around the country there are many programs that provide rehabilitation for individuals with TBI. One such program for military members is the National Intrepid Center of Excellence for traumatic brain injury and psychological health in Bethesda, MD, which is tailored toward the needs of service members. The VA also has similar programs for veterans through the Polytrauma system of care (http://www.polytrauma.va.gov). This system is for people with TBI, many of whom also have other injuries. A list of brain injury rehabilitation programs in your state can likely be obtained from the Brain Injury Association of America (http://www.biausa.org).

People with milder injuries may receive rehabilitation treatment by coming to the clinic just like a routine medical appointment. Also, those who are well enough to travel to an outpatient clinic for therapy or whose family members will provide all the help and supervision needed at home are able to have visits provided through an outpatient clinic.

Cognitive rehabilitation is a treatment used to help individuals compensate for memory, attention, and other thinking problems. One major focus of cognitive rehabilitation is helping you organize your physical environment and your day to increase productivity and attention. It is often provided by a speech pathologist or a neuropsychologist.

What Can I Do to Improve My Memory and Attention Problems?

Develop personal mottos or key words that cue you to stay on track or complete tasks. These mottos help trigger your memory about what you need to do. Some examples that have been used are, “do it, write it, or forget it,” “be here now,” “stop, relax, refocus,” and “KPW” (“keys, phone, and wallet,” which you can use when leaving the house). Follow a routine as much as you can. Take breaks as needed and pace yourself. Use key words to summarize information so you can later recall it from memory using just the key words. Also, relaxation strategies promote the brain’s readiness to learn and remember. Relaxation strategies are very beneficial to people diagnosed with TBI because stress can literally cause changes in brain functioning, particularly memory and attention functioning. Ruminating and worrying about symptoms can make them appear worse. Try some brief relaxation techniques before starting a task, including slow, deep breathing. Many people say that managing stress has improved memory and concentration!

What Communication Skills Can I Try to Improve My Relationships With Others?

Some brain injury survivors will find that they need to slow down speech to get words out. Others need to “take a step back” mentally to create some distance before discussing personal things. You can manage your discussion of your injury while looking for cues to continue talking (the other person continues their eye contact with you) or stop (the other person looks away from you). Some people will ask permission to summarize what they have heard, to ensure they didn’t miss anything. Other survivors find that focusing on keeping a friendly expression or remaining at an arm’s length away is helpful. The fatigue you may be experiencing after brain injury can increase when you’re around a lot of other people. Know this so that you can slow yourself down or take a break from the action. Start out with briefer activities, and pace yourself to prevent fatigue. You may need to use assertive communication, such as “I’m going to need some breaks” or “I’m probably going to need to leave early” to prevent fatigue. The use of “I” before each of these statements and communicating the messages up front can help prevent others’ hurt feelings if you need to stop the activity.

A counselor can help you master some communication skills or help you adjust to brain injury as a couple or family.

What Are Some Other Recovery Tips After Brain Injury?

1. Remember that you are not alone. There are many people just like you, recovering from a TBI. Don’t isolate yourself, a tendency that can come after a brain injury, and make sure the people you do spend time with treat you with dignity and respect. If you’re part of a group therapy setting, you can find others to share your recovery with who understand what you are going through. If you would like to start group therapy or meet one on one with a supportive professional but can’t find these resources, start with your primary care doctor or a mental health professional, both of whom will likely know what resources are available in the hospital or local community for people who have experienced brain injuries. Support groups do help. It can be difficult to know what services to ask for or to find doctors who specialize in helping people with brain injury. Be persistent. There are many doctors out there who are waiting to help.

2. Remember that things will get easier once you have developed a routine.

3. Keep your family and loved ones involved in your recovery process if it is possible. They are probably doing the best they can but may be new to brain injury and may be adjusting to changes as well. At the same time, people in your support system may get a sense of life purpose and increased self-esteem from being with you and from providing a safe and loving environment.

4. Mental and physical rest immediately within the days following brain injury can help your brain heal faster. You should receive plenty of sleep during this time period. While getting plenty of sleep is always a good idea, you can consider talking with your doctor about increasing your activity level and socializing more with others, for the sake of your mood and your recovery. Ask your doctor about whether this makes sense.

5. All too often people feel overwhelmed by their memory problems, but one useful coping strategy has been to isolate and identify each memory problem, make a list on paper, and attack one problem at a time. 6. If you abstain from alcohol and drug use after TBI, your thinking will be more efficient and your brain’s ability to heal from injury may be a lot better. Alcohol has been shown to more negatively affect people with TBI.

7. Protect yourself from having an additional brain injury by avoiding contact sports as recommended by your doctor. It is very important to participate in activities you still enjoy, so check with your doctor on other activities that might still be safe and fun.

8. One good self-help book for recovery tips on brain injury is Brain Injury Survival Kit: 365 Tips, Tools, and Tricks to Deal with Cognitive Function Loss, by Cheryle Sullivan (2008; Demos).

How Do I Find Doctors That Specialize in Diagnosing Brain Injury, and Who Can Help Me After Brain Injury?

You can start by asking your primary care doctor or local hospital for suggestions. The Brain Injury Association of America (http://www.biausa.org) can also give you names of doctors, support groups, and educational materials of people who can help.

For military personnel and veterans, the Defense and Veterans Brain Injury Center (DVBIC; see http://www.dvbic.org) and the Veterans Affairs (VA) Polytrauma System of Care (http://www.polytrauma.va.gov) can connect you with the care you will need.

For those who are affected by brain injury, please remember that you are not alone and that there are so many resources and strategies to understand and compensate for brain injury.