The brain is extraordinarily complex. The average human brain has about 100 billion nerve cells that transmit as many as 1,000 trillion signals to support body functions and responses. When an injury to the brain occurs, messages from one or more sections of the brain may be disrupted. Some messages may not be released, or may occur in changed or unexpected ways. Brain injuries are unique to each person. Think of your brain as your own fingerprint. Let’s discuss this in very simple terms.
The brain consists of two halves. The left side of the brain sends signals to and controls the right side of the body and the right side of the brain controls the left side of the body. A friend of mine had a stroke, another type of brain injury, which resulted in her right arm being paralyzed. Her stroke occurred on the left side of her brain.
In addition to the two sides of the brain, the brain has various sections that control specific functions. These sections are referred to as “lobes.” Each lobe controls different functions. There are many spots within each of the lobes that control very specific things. For example, one area sends signals to control how you move the muscles in your face and throat. If this area is impaired, someone may have difficulty swallowing or moving their mouth to form words.
Knowing more about the location effected by a brain injury can help you better understand why a person may be challenged with certain functions or behaviors. For example, the frontal lobe supports your ability to plan, multi-task, and solve problems. It also helps filter information and reminds you to refrain from inappropriate behavior. The degree to which any of these functions are problematic varies from person to person, depending on the severity of the injury.
This very simple description serves as a general reference and is not intended to cover every detail and functionality. Knowing how the brain works helps family, friends, and even the person who sustained a brain injury, better understand why he or she may experience difficulty with particular tasks or behave in unexpected ways. It also reminds us that a brain injury is a “physical” condition, not something that someone can just “will” through or completely control. Despite changes and challenges in thinking, memory, and behavior, there are a variety of strategies that can support you and your loved one’s progress and adjustment.
STRUCTURE YOUR TIME
With a brain injury, the process of “thinking” is more taxing than usual. Mentally keeping track of daily appointments, activities, and people is tiring. At times, this can be frustrating and may even create anxiety. Structuring your loved one’s day with a schedule of events is helpful because it reduces the energy needed to remember things. Schedules provide cues to what needs to occur in a given day and a reference to what was accomplished. Schedules also help establish routines which build and expand thinking skills. Referring to a schedule prompts conversations and helps your loved one to reflect on what’s been completed or needs to be completed. All of this supports planning and problem solving skills.
BE TIME SENSITIVE
Many people with brain injuries indicate that their sense of time is altered. They have to work hard to grasp what time is and how to complete things on time. Random time changes can be upsetting and make it difficult to regroup. Being mindful of this characteristic can help you stay true to your words and be respectful in your communication and interaction. For example, if you said you’d pick up your friend at 8 o’clock and you’re running late, give him a call so he doesn’t waste mental energy thinking he forgot the time or wrote it down incorrectly. Understand that your friend is working to make the most of their energy bank on any given day. Your thoughtfulness can help him increase patience and tolerance, as well as minimize stress.
As much as possible, keep environments peaceful and free of multiple distractions in order to help your friend or family member focus and build their mental tolerance. Engaging in one topic, conversation, or activity at a time is helpful. Take breaks and allow for more time to complete activities to maximize cognitive energy. As you pay attention to energy levels you will be able to recognize a “tipping point,” and be better able to gauge times of day that are most effective for activity or when mental rest is needed.
Gradually extend involvement in activities over time. Start small and build from there. This might occur with one activity that forces your loved one to think of, remember, and follow through with something. It could be as simple as, “Today, I am going to walk the dog.” In many cases, mental stamina will increase. Remember to be patient. Finding a balance between rest and activity is an ongoing process.
There will be times when your loved one just doesn’t feel like themselves, or behaves in ways that are not typical. There may even be instances when he or she says something or talks in a way that is completely from their norm. If moods swing dramatically or tempers flare, working with a coach may be helpful.
A coach is someone who can be trusted to help your loved one know when behavior is unproductive or inappropriate. A coach can help your loved one develop ways to improve communications and reactions to situations. A coach could be a family member or friend. It’s important that this person be accepted and respected by your loved one. Both can then work towards becoming alert to instances in need of change and strategies to support success.
One method reported to be helpful involves using a discrete signal to help your loved one know when their behavior needs adjustment. For example, if your loved one was in a group conversation and their comments started to become inappropriate, the coach could rub his/her chin or cough to let your loved one know things are going off track. Your loved one and coach would make this explicit between them to avoid resentment. To be successful, your loved one needs to commit to responding to his/her coach when the signal is used. Likewise, the coach needs to commit to only using the signal when it will be helpful.
It takes work and time to bring about self-awareness. A component of this also includes supporting your loved one in paying attention to their personal appearance and body language. Maintaining personal hygiene can help them feel good about themselves and understand more about their first impression to others. Encouraging your loved one to look in the mirror to practice facial expressions also supports this process. Gently reinforce smiling, making eye contact, and positive body language.
ENGAGE WITH OTHERS
Getting out and being involved in activities with others reinforces gains made and supports ongoing progress. Outings and recreational activities also help others and your loved one to see themselves beyond the brain injury. To be successful, begin with activities that fit energy levels and interests. For example, a short outing to a local concert in the park may be more appropriate than going to a full concert at a big auditorium. If interests have changed or motivation is low, be flexible and open to exploring new activities. Adopting a can-do approach helps all parties involved develop tolerance and willingness to explore new territory in social activities. Start with familiar people, places, and activities and begin to branch out from there. If your loved one has added mobility challenges, be mindful of accessibility and endurance needs. Plan accordingly so you can create and engage in experiences that leave everyone feeling refreshed and not drained. This may initially mean engaging for short time frames, gathering earlier than usual, or leaving an event before it ends. The main point is to get out and enjoy something totally unrelated to day to day care. This also provides useful ways to build on interpersonal skills and strengthens relationships.
People tend to measure success by how soon they get back to who they were and what they did. As difficult as it may be, do your best to refrain from comparisons. Focus on where you are and what you can do, now. Oftentimes, people will say, “I was doing x, y, z and I’m working to get back to that.” While this may be a goal, recognize that one part of recovery includes getting some of that back, and another part includes knowing that you will continue to progress in new ways. It is important to recognize that there are always new opportunities, no matter where you’re at in life. Focus on the “now” and see how you progress. Celebrate gains, no matter how big or small. Better is better.
EXPAND YOUR RESOURCE NETWORK
Understanding your challenges can help you teach others about what a brain injury is and isn’t. Tell someone what you learned today. Help your family and close friends understand that a brain injury is a physical condition -- that the brain injury challenges the way information is processed and does not reflect your loved one’s intelligence, and that too much information and stimulation can create mental fatigue.
Set small goals and keep moving forward. Talk with your loved one to identify a trusted coach who is willing work with them and be their advocate. Make a point to get out on a regular basis and enjoy activities with others.
Despite the challenges of living with a brain injury, you have the power to overcome obstacles. Your positive perseverance will help you and your loved one to discover and enjoy life with purpose and meaning. Creating a team of support will help carry you through this time of transition in a positive way. Start small and stick with it.
Promising research on brain injury treatment and recovery shows that physical rehabilitation has a significant impact in recovery. Partner with your physician and medical team to ensure ongoing progress and support.
“TIPS FOR FAMILIES AND FRIENDS” *
- Be true to your word
- Be time sensitive
- Speak slowly and clearly, but not demeaning. Speak to the person, not around them or in third person
- Focus conversations - one person, one topic, one task at a time
- Minimize distractions – it can be hard work to interact with others
- Be mindful of fatigue and how it affects thinking and behavior – both brain and physical stamina
- Verify that information is understood
- Write down information for recall at another time
- Use visuals to simplify / clarify
- Reinforce use of a to do list or memory book
- Establish a signal to help a person “stop & think” – use the signal in a fair way
- Rehearse answers to questions - Keep it simple and positive.
- Reach out to others to help them stay connected with you and your loved one
- Clarify misinformation and misunderstandings – nurture relationships
- Embrace the person for who they are now – refrain from comparisons to the old self
- Practice forgiveness
Brain Injury Association of Maryland, Why Did it Happen on a School Day? https://www.sralab.org/lifecenter/resources/why-did-it-happen-school-day
Burgard, Jodi, Brain Injury: Why Does my Loved One Act Out? https://www.sralab.org/lifecenter/resources/brain-injury-why-does-my-loved-one-act-out
* Cichowski, MS, Kristine, Paschen, Judson, Changes in Thinking, Memory, and Behavior: Strategies for Coping & Adjustment after Brain Injury, Shirley Ryan AbilityLab
Nadler, Paul, Brain Damadj’d… Take II (film). Toronto: Apartment 11 Productions; dist: Films for the Humanities.
Neumann, PhD, Dawn, Lequerica, PhD, Anthony, Model Systems Knowledge Translation System. TBI Fact Sheets. Cognitive Problems after Traumatic Brain Injury, http://www.msktc.org/tbi/factsheets/Cognitive-Problems-After-Traumatic-Brain-Injury
Neumann, PhD, Dawn, Lequerica, PhD, Anthony, Model Systems Knowledge Translation System. TBI Fact Sheetss. Emotional Problems after Traumatic Brain Injury.
Ranchos Los Amigos National Rehabilitation Center, Brain Injury: Family Guide to The Rancho Levels of Cognitive Functioning, http://file.lacounty.gov/SDSInter/dhs/218115_RLOCFOriginalFamilyGuide-English.pdf
Shirley Ryan AbilityLab-Brain Injury Team, Brain Injury Circle of Caring – A family discussion guide.
Shirley Ryan AbilityLab-Brain Injury Team, Brain Injury: Impaired Cognition, https://www.sralab.org/lifecenter/resources/brain-injury-impaired-cognition
Shirley Ryan AbilityLab-Brain Injury Team, Brain Injury Overview: What is it? What does it affect? https://www.sralab.org/lifecenter/resources/brain-injury-overview-what-it-and-what-does-it-affect
Shirley Ryan AbilityLab-Brain Injury Team, Brain Injury Patient and Family Resource Guide. https://www.sralab.org/lifecenter/binder
Rehabilitation Institute of Chicago Academy. Behavioral management strategies for working with persons with brain injury https://www.sralab.org/lifecenter/resources/behavioral-management-strategies-working-persons-brain-injury
The Human Memory, http://www.human-memory.net/brain_neurons.html
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