Archive for category Caregivers

[WEB SITE] TBI Basics – BrainLine

A TBI can happen to anyone, whether it happens while playing sports, at work, or just slipping on an icy sidewalk. Injuries can range from “mild” to “severe”, with a majority of cases being concussions or mild TBI. The good news is that most cases are treatable and there are several ways to help prevent injury.

What You’ll Find Here

You Are Not Alone

You Are Not Alone

See how others are navigating their post-TBI lives. Check out personal stories and “life after TBI” blogs, or join the conversation with our Facebook community.

Source: TBI Basics | BrainLine


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[WEB SITE] Stress and Stress Management Post-TBI – BrainLine

Stress and Stress Management Post-TBI


Why does stress bring back my TBI symptoms with a vengeance? It feels like a knife reopening a wound. What goes wrong in the brain after injury that makes this happen?


Stress occurs when there is a gap between the current task demands and the resources you have to meet those demands. Your brain interprets this as a threat. Acute stress — as in immediate physical danger — produces a physical reaction (the fight-or-flight response) that includes increased pupil dilation, perspiration, increased heart rate and blood pressure, rapid breathing, muscle tension, and increased mental alertness. However, less immediately threatening or prolonged stressors, such as ongoing money problems, too many things to get done in one day, even something like unexpected company, will produce these reactions. They may occur to a lessor degree, but ongoing stress reactions, even mild ones, will result in your body preparing for a long-term protective response.

Fatigue, concentration lapses, irritability, and lethargy result as the stress continues without relief. You probably recognize these as some of the TBI symptoms you feel coming back with a vengeance. Having experienced a TBI makes you both more susceptible to these symptoms, and these symptoms make it more difficult for you to effectively use whatever coping or compensatory strategies you may have developed to manage your TBI symptoms.

Learning to manage stress is important for all of us, and of particular importance to the recovery process after TBI. Techniques such as relaxation, time management, goal-setting, organization, cognitive-behavioral techniques, and lifestyle modifications can all be helpful in managing stress. It is recommended that you get some help and support in figuring out which of these techniques will be most useful for you from a mental health provider, a case manager, a life coach, a support group, or even a good friend if the stress levels are not overwhelming or seriously affecting your life. There are plenty of resources available for stress management, and a lot of information online, but sifting through it and tailoring it for your particular needs may be challenging without some support.

For more information on stress and stress management, click here.

Source: Stress and Stress Management Post-TBI | BrainLine

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[BLOG POST] 7 Things You Should Never Say To Someone With TBI or PTS

If you have a friend or loved one who is suffering from a psychological health condition like TBI, it can be hard at times to express your compassion through general words. It’s important to be sensitive when speaking to them about their struggles, and it is crucial for them to have your support during this challenging time.

While there is no doubt that you mean well, just a few simple words that don’t mean much to you can actually be painful for them to hear.

“You don’t look sick.”
Not showing physical symptoms of being ill doesn’t mean that illness is not there. While there can sometimes be slight, but noticeable changes in appearance, many of the changes are mental, such as feeling emotionally numb, experiencing panic attacks, and having suicidal thoughts.

“You’re lucky! It could’ve been worse.”
There is nothing that is lucky about living with a psychological health condition. Every day can come with a new set of challenges.

“Are you sure it’s not just all in your head?”
As previously stated, it can be hard for someone to understand what a person suffering from TBI is going through because those symptoms and changes aren’t physical. This battle is internal and is a very real illness. Saying this can just make them feel as if their psychological health conditions aren’t real and could prevent them from seeking the professional help they need. It can also lead to giving them unnecessary stress and anxiety. Read more about the stigma of mental illness.

“Maybe you should just get out more.”
Certain social situations can be overwhelming for those who suffer from psychological health conditions. Loud noises and crowds can often be a stress-inducing trigger, so avoiding them can be better for their health.

“Just look on the bright side!”
While positivity and optimism play a key role in getting better, “looking on the bright side” won’t treat psychological health conditions alone.

“What if you just stop thinking about it?”
When someone experiences a traumatic event, it’s hard to erase that impactful moment from their life. Oftentimes, that moment will replay itself in that person’s head over and over again. Experiencing these flashbacks can lead to destructive behavior to try and block out the memory.

“Have you tried _________?”
There are many ways to help treat psychological health conditions, but leave it to the experts to find what works best for the patient. (Unless you’re asking them if they’ve tried to seek professional treatment. Then by all means, please encourage that!)

The greatest things that you can say to someone who is fighting TBI are genuine words of support. Let them know you’re there for them and that you believe that what they’re going through is a real illness. They’ll appreciate that more than anything else.

Source: Intrepid Fallen Heroes Fund – 7 Things You Should Never Say To Someone With TBI or PTS


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[WEB SITE] Couples’ Relationships After Traumatic Brain Injury – BrainLine

Couples' Relationships After Traumatic Brain Injury

Although some of the relationship changes after TBI are difficult and can be painful, there are many things that couples can do in order to enjoy each other and their relationship in new, positive, and meaningful ways.

Couples’ Relationships and TBI

A TBI can significantly change a couple’s relationship. There are different degrees of brain injury severity, and milder injuries such as concussions do not always result in significant or long-term relationship changes. However, after severe, moderate, or complicated-mild brain injury, both survivors and their spouses or partners must often change many parts of their lives. The following life changes typically affect intimate relationships:

  • Changes in responsibilities
  • Changes in relationship roles
  • Changes and challenges in communication

Brain injury survivors often have new personality traits, challenges, fears, and limitations. Survivors are often surprised by how these changes also mean that they will feel and behave differently in their relationships. These changes have led many spouses to say they feel like they are “married to a stranger.”

The intimate partners of survivors may have new concerns or fears related to both the incident that caused the injury and the new behavior traits of the survivor. Also, partners often change the focus in their lives in order to manage the multiple challenges that arise for their family after an injury.

These changes in the survivor’s personality and the life focus of both partners often result in a feeling that partners do not know what to expect from one another. Uncertainty can increase stress and anxiety within the home.

How Are Relationships Typically Affected?


After a TBI, survivors must focus their energy on getting better and developing new skills. As a result, the assignment of responsibilities in the home must change. This means that everyone in the family is involved in learning new skills and taking on new jobs.

How do responsibilities typically change?

  • Survivors often give up many responsibilities, including work expectations and household chores, while they focus on getting better.
  • Partners often must take on many responsibilities formerly managed by the survivor, such as:
    • Yard work and physically maintaining their home through chores and repairs
    • Managing household finances
    • Planning and organizing activities for the family
  • There are also new tasks for both survivors and their partners, such as managing the health care of the survivor.

What happens when responsibilities change?

  • Any time people have to take on new responsibilities and learn how to handle new tasks, they will also experience more stress.
  • In addition to the stress of injury and recovery, the stress of changes in responsibilities can increase tension between partners.
  • Partners who have significantly more responsibilities will also have less time for other things. In contrast, survivors who are focusing on getting better may feel like they have more time. This can result in different expectations about how much time partners have to spend together.

Tips to improve relationship issues related to responsibility changes

  • Be understanding about each other’s new responsibilities. This can have a positive impact on a relationship. Although it is natural to focus on oneself when a person is overwhelmed, partners must take time and effort to note all of the new responsibilities their partner is managing. Noticing and talking about these challenges can reduce tension within your relationship.
  • Say “thank you.” Make a commitment to yourself to thank your partner at least once a day for attempting to manage new responsibilities.
  • Schedule opportunities to take breaks from responsibility. These breaks may be short and may not be as frequent as desired. However, when couples and families schedule time off for each adult family member and honor that commitment both practically and emotionally, thankfulness and respect are more likely to grow in the relationship.

Relationship Roles

In all families, people take on roles that often define how they behave. After brain injury, the challenge of recovery nearly always results in some changes to the roles within a family. While the person with TBI is in the hospital, their partner may need to make decisions that are usually made by the survivor. For example, a husband may make decisions about child care that his wife usually makes, or a wife may calm the family when everyone is upset, although that is something her husband has always done.

How do relationship roles change?

  • Although people often take on many different roles in their relationships over the course of a lifetime, TBI results in dramatic role changes that occur instantly, and without preparation.
  • Early on in recovery, it may seem to couples that role changes are temporary. However, as time progresses, couples often find that these role changes may last for years or even be permanent.
  • Commonly, partners take on more leadership roles in the relationship. Depending upon who is hurt and how the family did things before the injury, this may mean some small shifts for the couple, or it may mean drastic changes.

What happens when relationship roles change?

  • The more role changes that occur, and the more dramatic the changes are, the harder it may be for a couple to adjust to the changes.
  • Certain family dynamics may also make the role changes more challenging:
    • Couples who keep tasks separate instead of alternating who does what may find it more challenging to adjust to new roles.
    • Couples who have just recently begun a new phase of their relationship, such as being newly married, having children, or being a new “empty nest” couple, may have a more difficult time with changes in roles.
  • As each partner learns how to operate in his or her new role, there will be a period of adjustment for both people. Uncertainty and frustration during this time can result in increased criticism between partners.
  • People close to the couple may not understand the need for role changes and sometimes incorrectly believe that such changes slow recovery. For example, family members may say “Let her talk to the kids’ teachers. She will never get back to her old self if you don’t let her do her job.” This can cause tension between the couple and their family and/or friends.

Tips to improve relationships when roles have changed

  • Identify where role changes occur and talk about these changes openly. Partners should try to be sensitive to the feelings of survivors. For example, the survivor may have felt pride in his or her role before the TBI and may feel sad or frustrated when asked to step aside.
  • Partners can serve as mentors and consultants for one another. Couples can ask one another, “What works best for you when you are in this situation?” Although survivors may not be able to manage a former role, such as being the financial decision maker, they can share their knowledge with their spouse. Both partners will benefit when this approach is taken.
  • Couples must be conscious of not criticizing the partner who is taking on a new role. For example, it is unlikely that a girlfriend will handle a challenge in the same way her boyfriend would have handled it. Partners should work hard to support one another in their new roles. This includes being patient with the time it takes for everyone to feel comfortable in their new roles.
  • Family and friends may need to be taught about brain injury and the changes it brings. Children who live at home will also benefit from direct discussions about these changes: “I know mom used to be the person who checked your homework every day, but she and I have decided that it will be better for now if I do it.” Without open communication about role changes, others may not understand why things feel so different and why supporting those differences can help the whole family to heal.


Communication is the foundation of a relationship. Many people think only of talking when they hear the word “communication,” but couples are actually communicating through gestures, facial expressions, emotional reactions, and physical interactions as well. In studies on relationships after brain injury, communication is often reported as the biggest change people notice.

For spouses:

  • Additional responsibilities and the uncertainty of recovery can cause spouses to feel very overwhelmed. When overwhelmed, people often change their communication styles. Some common changes can include talking less, talking more, and/or communicating more intensely or urgently than before.
  • Spouses may be unsure how best to communicate with their partner after injury. This discomfort may cause spouses not to communicate as often or as openly with the survivor.

For both people:

  • Increased stress levels often affect communication for both partners.
  • Both people may be afraid that sharing their negative thoughts or feelings will burden their partner.
  • When either person in a relationship changes how he or she communicates, both people will behave differently.

What happens when communication styles and patterns change?

  • Changes in communication between partners can result in both people feeling alone and isolated. Couples may feel they no longer understand what their partner is thinking or feeling.
  • Difficulty communicating can sometimes cause people to pull away from their relationship, choosing instead to handle challenges with friends or other family members. Sometimes, people choose not to communicate their feelings with anyone at all.
  • Communication struggles can impact all other parts of a relationship, including responsibilities and roles, and make it difficult to adjust to changes together.

Tips on improving a couple’s communication

  • Both partners should make a commitment to improve communication.
  • Listen patiently to what your partner is saying.
  • Listen for points where you can agree rather than focusing on disagreement.
  • When you do disagree, think about what you might say before you say it.
  • Remember that survivors will likely need more time to think about what their partner is saying, or about how they want to communicate again, patience is key.
  • Take notes on your thoughts during conversations rather than immediately saying what comes to mind. Come back to these points later, after you have had time to reflect.
  • Exchange bulleted lists of important points for big discussions. When you have something you would like to say, write it down before a discussion and use it as a guide. Trading these lists after a conversation helps with memory and allows more time to digest and think about the information.
  • When a topic is likely to cause a disagreement, practice what you would like to say before you start the conversation.
  • Practice in front of a mirror. Look at facial expressions, gestures, and body language, while also choosing your words carefully. When you talk, try to stick to what you practiced.

Physical Intimacy/Sexual Relationships

Most couples notice significant changes in their sexual relationship after TBI. There are many reasons for these differences, including changes in:

  • Hormone levels due to injury
  • Roles in the sexual relationship
  • Appearance, self-confidence, and or attraction
  • Areas of sexual interest

*For more information on physical intimacy and sex after TBI, see the MSKTC factsheet on BrainLine “TBI & Sexuality.”

Tips for Improving Intimate Relationships

Find a therapist

Therapy can give couples support and ideas to improve their specific situations. Different types of counseling are available, including individual counseling for either the survivor or partner, couples counseling, or family therapy.

Seek out a counselor or psychotherapist who has expertise in brain injuries. If there are no therapists locally with brain injury experience, couples should provide their therapist with information about injury and common relationship challenges that can accompany injury. The Web sites on this factsheet can be a good place to start.

Try a support group

Many communities have support groups for both survivors and caregivers/partners, which are often listed in the newspaper or advertised by State brain injury associations. These groups can help couples establish new friendships, find local information and resources, and provide time apart from their partner for reflection.

When local support groups are unavailable, try Web-based chat groups and support communities. These groups are an excellent option when in-person groups are either too far away or when transportation is a challenge.

Finding a therapist or a support group

To find a support group or counselor in your area, start with your State brain injury association. If you do not know how to reach your State brain injury association, you can either a) contact the Brain Injury Association of America (1–800–444–6443 or on the Web at or b) use an online search engine (Google, Yahoo, Bing, etc.) to find one by typing in “Brain Injury Association” and the name of your state.

Online support groups are available on Facebook and throughout the Web. Use the search feature on Facebook and type “Traumatic Brain Injury” to find different groups that you may like. Or use an online search engine such as Google or Yahoo and search the term “Traumatic Brain Injury Support Groups.” There are many different options, so look around to find the one that best fits your needs.

Changing the relationship environment

At home, make a commitment to establish a positive environment. Looking for progress in recovery instead of ways in which a relationship is not succeeding can improve how people feel about each other. Additionally, part of having a positive home life comes from the opportunity for fun as a couple.

Scheduling a “date” on the calendar to take a walk, watch a movie on television, or play a game like cards can be an inexpensive strategy that may make a big difference in reducing tension. When fun time is scheduled, consider it to be as important as a doctor’s appointment—something that cannot be ignored or rescheduled.

Considerations in new relationships

If you are in a new relationship, the process of recovery can be more complicated. For example, if an individual is injured while he or she is in the early stages of a relationship, the couple may not know what their roles are yet. This can result in confusion and uncertainty and may lead some people to ask, “Who am I in this relationship?” or “Who are we together?”

Any couples who are new to their relationships can work to take a positive approach to recovery. Although role uncertainty may be a challenge, it also provides the couple more freedom by not being tied to old ways of doing things.

Considerations in nontraditional relationships

There are also a growing number of adults who choose to live in unmarried monogamous relationships. For cultural, financial, social, or other reasons, these couples may not be in a “traditional marriage.” Individuals who identify as gay, bisexual, lesbian, or transgender, as well as people who identify as heterosexual and in an unmarried relationship may have more complicated issues to deal with.

For example, they may not have access to their unmarried partner’s insurance, bereavement, pension, or other benefits. Other challenges can include the inability to be represented in health care decisions, lack of recognized family leave from work, or even having to choose to “come out” as a result of the injury. In addition, the lack of acceptance or awareness in their community with regard to nontraditional relationships may impact a couple’s ability even to seek or obtain care. These complications can influence a couple’s success or failure in a relationship.

Tips for nontraditional couples to manage challenges

  • For caregiving partners, building relationships with the survivor’s family members who are supportive can be very helpful. Partners may want to make working on these relationships a top priority as a way to stay involved in a survivor’s care.
  • Psychotherapy or counseling is likely an important component of recovery for nontraditional couples. Because partners may have even less support than couples in traditional relationships, finding a therapist who can provide this support and guidance is an important part of healing.

Concerns About Divorce or Separation

You may have heard that divorce or separation is likely after TBI. Although no one knows for sure what will happen in any relationship, some studies suggest that divorce and separation rates may actually be lower after brain injury than for the rest of the population. Rather than focusing on the possibility of divorce or separation, couples do best by focusing on improving the quality of their relationship with one another.

Recommended Reading

  • Healing Your Marriage After Brain Injury. Published in “The Challenge,” a Brain Injury Association of America publication. Written by Jeffrey S. Kreutzer, Ph.D., and Emilie E. Godwin, Ph.D.
  • Learning by Accident. Written by Rosemary Rawlins
  • Brain Injury Survivor’s Guide: Welcome to Our World. Written by Larry Jameson and Beth Jameson
  • Blog: Starting Marriage Over After a Brain Injury (survivor and caregiver stories). Available at
Posted on BrainLine April 17, 2013

Couples’ Relationships After Traumatic Brain Injury was developed by Emilie Godwin, PhD, Jeffrey Kreutzer, PhD, and Stephanie Kolakowsky-Hayner, PhD in collaboration with the Model System Knowledge Translation Center. This health information content is based on research evidence and approved by experts from the TBI Model Systems.

Please check the MSKTC site for any recent updates on this article.

Source: Couples’ Relationships After Traumatic Brain Injury | BrainLine

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[WEB PAGE] Stressed out? Try talking to yourself in the third person

New research shows that talking to yourself in the third person may help to relieve stress and anxiety.

From meditation to physical activity, there are various things that we can do to regain control over our emotions during stressful times. But what if there was an easier way of doing that? New research investigates the effect of talking to yourself in third person on emotion management.

A team of researchers, led by scientists from Michigan State University in East Lansing and the University of Michigan in Ann Arbor, set out to examine the neuropsychological effect of talking to oneself in the third person on controlling one’s emotions.

The researchers’ hypothesis was that talking to oneself in the same way that one would about others would provide some much-needed psychological distance, which may help to control emotions.

The new study – which is published in the journal Scientific Reports – consists of two neuroscientific experiments that tested this hypothesis.

Using an electroencephalograph

In the first experiment – which was conducted at the Clinical Psychophysiology Lab and led by Prof. Jason Moser, of Michigan State University – participants were asked to look at emotionally aversive images (for example, a man pointing a gun at their heads) and neutral images.

They were asked to view these images in both conditions: the first-person condition, and the third-person condition.

In the former, the participants asked themselves, “What am I feeling right now?” But in the latter condition, they asked themselves, “What is [participant’s name] feeling right now?”

The participants’ brain activity was monitored using an electroencephalograph.

Referring to themselves in the third person reduced the participants’ brain activity across the neural mechanisms that are known to be involved in emotional regulation – and it did so almost immediately, within 1 second.

Interestingly, the brain activity – as recorded by the electroencephalograph – did not show an increase in cognitive control markers, which suggests that the strategy is effective at managing stress in a cognitively effortless way.

Talking to oneself inside an fMRI machine

In the second experiment, participants were asked to recall emotionally distressing experiences from their past in both first-person and third-person conditions.

This time, however, their brain activity was monitored using a functional MRI (fMRI) machine.

The second experiment revealed decreased activity in the medial prefrontal cortex, an area known to be a marker for self-referential emotional processing.

So, the third-person technique decreased activity in the brain area involved in processing painful autobiographical emotional memories.

However, reinforcing the findings of the first experiment, the second experiment did not reveal increased activity in the brain network involved in the cognitive control of emotions, the frontoparietal network.

This suggested, once again, that talking to oneself in the third person may be a simple and cognitively inexpensive way of reducing negative emotions on the spot.

Essentially, we think referring to yourself in the third person leads people to think about themselves more similar to how they think about others, and you can see evidence for this in the brain. That helps people gain a tiny bit of psychological distance from their experiences, which can often be useful for regulating emotions.”

Prof. Jason Moser

“What’s really exciting here,” says the leader of the second study, Ethan Kross, of the University of Michigan, “is that the brain data from these two complementary experiments suggest that third-person self-talk may constitute a relatively effortless form of emotion regulation.”

“If this ends up being true – we won’t know until more research is done – there are lots of important implications these findings have for our basic understanding of how self-control works, and for how to help people control their emotions in daily life,” concludes Kross.

Source: Stressed out? Try talking to yourself in the third person

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[BLOG POST] Every Little Thing You Do – BrainLine

Every Little Thing You Do

Hugh Rawlins
Every Little Thing You Do Hugh Rawlins

When I sustained a severe traumatic brain injury fifteen years ago, I learned that every small step I took to return to health made a difference.

It took over a year of intense occupational, physical, speech, and cognitive therapy to regain the use of my left side, my balance, ability to walk, run, ride my bike, speak coherently, and increase my attention span and memory. In short, I began enjoying life once the cloud lifted (brain injuries heal slowly). It also took nearly a year for me to motivate myself to work hard again since I had executive function issues, but once I was able to motivate myself, my healing accelerated.

It wasn’t always easy, and I often felt like quitting, but the important thing is that I didn’t quit. I stuck with my rehab and listened to my family and friends even when I felt they were annoying.

In the past twelve years, I’ve lost count of the number of people who have asked me, “How did you do it? What did you do differently?” The first and only response to that question is that every individual and every brain injury is unique. Some injuries make it impossible for a person to regain his or her speech, balance, or memory. Other injuries require persistence, a healthy lifestyle, and rehab to reach success.

There are no guarantees, but there are smart choices and strategies that can optimize recovery after TBI. The following is a list I compiled as my answer to the many people in the beginning stages of TBI who have asked about my success over the years. I hope it helps.

1. Find doctors that you trust and follow sound advice.

Some doctors are more informed about TBI than others. This seems like obvious advice, but you’d be amazed at the number of people who do not follow through—who don’t exercise, eat right, or make an effort to rest and follow instructions—especially when it comes to doing the “homework” required of therapy.

2. I take short naps when I need them.

They help me rejuvenate myself and give me the energy to enjoy a full day that lasts well into the night.

3. I think about multiple ways to accomplish something.

Mental fatigue is harder on me than physical fatigue.

For this reason, I break my mental work into smaller segments of time. I might read the newspaper in the morning, balance my checkbook an hour or two later, and check email or work on the computer for only thirty minutes at a time. Taking a break in between mental work sessions allows me to stay energized.

4. I’m able to laugh at myself when I mess up.

This puts others at ease and helps me because then I’m not so hard on myself when I fail at something. In my book, the only failure in life is a failure to keep trying.

5. I (still) always consider the people in my company.

When in the company of new acquaintances, I tell myself to be quiet and not say too much because I know I’ll be at risk of saying something offensive off the top of my head. When I’m with family or friends, I am open and more talkative because they know me and understand that I sometimes express myself in unclear ways, and usually, we have a good laugh.

6. I always evaluate risk: both physically and mentally.

I ask myself these questions: How could I get hurt if I do this? If I do get hurt, what will be the likely injury? What plan do I have for escape? (If riding my bicycle on a road, I make sure there is a safe landing spot, grass, etc.) I leave extra length between other cyclists and especially vehicles. For mental risk, I think about places that are loud, noisy or have flashing lights (all three aggravate my symptoms and give me a headache). So I might choose to sit in a corner away from the crowd, or I may use earplugs (during a concert) to dull the noise.

7. I make sure to keep up social ties.

I will visit the surf shop to see a friend, make a phone call to reconnect with someone out of town or text a friend to catch up. These relationships enhance my life, and focusing on recreation is a welcome rest from “thinking” too much.

8. I make it a priority to exercise regularly.

I am fortunate that I love to exercise and be outdoors. I ride my bike, swim, surf, and walk with my wife. Exercise is a way of life and involves planning and research to maintain and improve physical and mental health. I also set goals by using a heart monitor, power meter, and Strava (a social network for athletes). Keeping track of progress provides motivation!

9. A few simple strategies that help me throughout the day include:

  • I manage my meds with a plastic med keeper to be sure I take my medicine on time and don’t take it twice.
  • I use alarms on my cell phone as reminders to do various activities.
  • I make an extra effort to drink liquids whenever I can to stay hydrated and because I have dry mouth from certain medications.
  • I still struggle with sleeping through the night so naps help.
  • When driving, if I feel tired, I pull over and take a power nap in the car.
  • I keep my wife’s cell phone number in my phone designated as ICE (In Case of Emergency), and wear an I.D. bracelet when cycling.
  • I talk about my feelings with trusted family members because it reduces stress and stress can exacerbate symptoms of TBI.

TBI is something that happened to me, but it’s not what defines me. Knowing that any moment could be my last makes me want to see, do, and enjoy as many people and as many experiences as possible.

Posted on BrainLine July 17, 2017

Source: Every Little Thing You Do | BrainLine


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[BLOG POST] Conquer motivation after brain injury- tips from a survivor

Why it’s so difficult to conquer motivation after brain injury?

One of the most commonly reported symptoms of brain injury is fatigue. And I don’t mean tiredness.  Fatigue is something much worse. For me I can be willing, but my brain has other ideas. Sometimes I think my conscious mind and sub-conscious don’t like each other and are always having an argument.  The result might make me appear lazy to the casual observer, but that isn’t the whole story. The ongoing battle is within me, as I try to conquer motivation.

When I tried to return to work (and failed) my bosses tried to tell me I needed to take some responsibility for my recovery. My left leg and arm were very weak, and they were surprised that I hadn’t joined a gym to rebuild my strength. At that stage I had never been a gym goer. But the idea of trying to do something like that without being ordered to was unfathomable.  When I was suffering with so much fatigue, how was I supposed to find the motivation?

Even things like tidying the house took so much building up to. But over time I have noticed something about myself. I knew it before, but I hadn’t appreciated it’s power over me previously.

The impact on others gives me more motivation than the impact on me.

9 months after my accident I adopted my Dads cat Murphy, who he was struggling to care for. I knew Murphy was ill, and it turned out to be mouth cancer. I had known Murphy his whole life as I lived at my parents when Murphy first arrived. We were best mates, and so I moved him to the other side of the country with me so I could look after him.

He was skinny and very underweight. As he had no appetite so I spent all day, everyday chasing him with food, trying to make him eat. Murphy became one of my priorities. I knew he didn’t have time on his side, but I needed to make him as comfortable as possible. And it worked, I soon got him back to a healthy weight. He found new energy and found the motivation to explore outside several times a day. That made me so happy. He was my reason to get out of bed in the mornings, because he needed me more now than he had ever in his life. Earlier this year he lost his battle, but he knew he was loved.

Others well-being is my motivation

How I motivate myself now.

So if I need to tidy the house, I tell myself how it’s not fair on my partner James if I don’t. He works long hard days, so I can’t expect him to do it after work. Nor should I expect him to have to live in a pig sty. So I tell myself off and get on with it. (Followed by a impromptu nap.)

I did eventually join a gym and was doing really well. But that has fallen by the wayside, as it only helps  me. I don’t think this is about confidence or self esteem, just having a purpose. I was always a dedicated worker, but now I don’t work I’ve had to explore other ways  to motivate myself.

When I started this blog, it wasn’t as therapy for myself, it was to raise awareness. I felt people needed to better understand brain injury. Now I know there are other survivors who read this and in some small way find it helpful. So my responsibility is to you, and therefore you are my motivation to continue my ramblings. So my advice is if you struggling to get going think who really needs you to complete that task. It could be as simple as the birds in your garden need you to put some food out for them to ensure their survival. We make a difference to somebodies life every day, that is a most profound motivation for me.

If you need more ideas on motivation I found this article which is suitable for most people.

Other related articles:

Source: Conquer motivation after brain injury- tips from a survivor


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[BLOG POST] How Relationships Can Change After a Brain Injury  

I want you to imagine someone who deeply loves you; how they make you feel when they smile at you and what it felt like to be around them. What if life changed in an instant, and they never looked at you the same way again?

Sadly, this happens to many traumatic brain injury (TBI) survivors, myself included. I have always been outgoing and had many cheerleaders who looked up to me. That look of aspiration turned into the look a wild animal would give after being caught in a trap for hours: frightened, helpless and hopeless. I remember seeing this look on people for a long time. Even when we were having a good time together, that look would be hiding deep in their eyes, waiting for my brain to scare them again. They would hug me as if it was the last hug they would ever give me.

My heart would shatter because in my mind I knew there was a chance they might be right; this might be the last time they hugged me. Even if I lived through the hospital stays and tests and “seizures” no doctor could diagnose, what if I forgot so many memories we shared that they couldn’t relate to me anymore?

When my TBI occurred it slowly began to bury every relationship I had. I have had a couple traumatic experiences in my life, and like a cat cashing in his lives, I have always bounced back. But with this brain injury I was not landing on my feet. That strong, confident, feisty woman turned into a helpless little girl who couldn’t even take a bath without supervision, or recognize family members. How do you relate to someone who has changed so drastically overnight?

Each brain injury is unique. Everyone can experience different symptoms, treatments and recovery times. However, there is one part of brain injury that is universal: the evolution of relationships. When the accident first occurs everyone tends to rally around you and cheer for a speedy recovery. When a limb is broken it heals, you rehabilitate, and life tends to move on. When there is damage to the brain or spine, the word speedy doesn’t come up during your recovery.

I remember being in the ICU when the symptoms of my TBI peaked in 2013. I earned myself a bright yellow “fall risk” bracelet, and my head was wrapped in gauze. I would wake up and have no idea who I was, or where I was. I wasn’t able to move the left side of my body and my head felt like it had been manhandled by a gorilla. My vision would be almost non-existent, and if I was really lucky I what I could see would be in doubles.

I would look around the room, not able to recognize my loved ones, a tear would roll out of my left eye and I would say, “Is my brain broken?” I would see everyone around me, dumbfounded on how to answer that question. My mouth would be so dry I could barely move my tongue to talk. “Was I in a car wreck?” I would utter out next. “No, honey, you weren’t in a wreck,” someone would usually confirm. I didn’t understand how I got there, or why I was in the condition I was in, although, they didn’t either.

I was sent home after five days in the ICU with no tools or explanation of what was happening. I would sleep for 14 or more hours a day. I was so weak and fatigued that I couldn’t sit for too long and my head would droop over as if a weight was tied to my neck. Sometimes my eyes looked like a zombie, just soulless. I couldn’t handle too much noise or light. If I reached my capacity with stimulation I would turn into an irritable T-rex that was seeking vengeance on anything that crossed my path.

I remember one day when my best friend sent me a text and asked if I wanted to hang out. I was overstimulated already when my phone began to buzz. He hadn’t heard the news about my condition yet, and unfortunately he found out through a text message sent straight from the wrath of my brain injury. I went off on the poor guy without realizing or remembering what I had done. He showed up to my house about a week later with a Disney puzzle in hand, and sulking sadness and confusion. I tried to explain what I could, as best as I could, and I saw his eyes tear up. He knew to some degree he lost his best friend Nikki, and she may never come back.

After I learned how I treated him on that text, I was immediately filled with regret, shame, and embarrassment. How could I be so cruel to some who cares about me so much? When he left I remember longing for the day we could go hang out again. I was also terrified — what if I said something worse to him, or said something I would never be able to take back?

I began slowly isolating myself from everyone so I wouldn’t be hateful to them, because I knew I wasn’t in a state to control it. I was also too embarrassed to be around them. Some days my speech was slurred and I would mix up my words. I can’t tell you how many times I called my dog a fridge, instead of Nyah. I felt worthless, like I was a burden to my friends and family. I saw the look on my friends and families faces that they would wear at my funeral. I didn’t have the emotional strength to keep facing that.

Significant time had passed and I was still working harder than ever to slowly get my life back. I had family members who would be critical of me because I hadn’t readapted into what they considered a normal life. “When are you going to get a job?” they would ask. Or my all-time favorite, “Is she just lazy?” I would get deeply offended. At the time I was going to 15 appointments a week to try to get to a stage where I could have some sort of quality of life. It took hours and hours of work just to come as far as I had and yet it still wasn’t good enough for them. They talked to me like a failure and a disappointment because I wasn’t healing at the rate they expected. It was ironic to me that all these people had opinions of how far along I should be, or what I should be doing, and yet not one of them had suffered from a brain injury. How could they project such a high standard at me, when clearly they had no education or experience that could relate to my circumstances? Why couldn’t they accept how I had become beautifully broken?

I knew that loss of relationships was a common after-effect of TBI but I was curious as to how common. I know of at least 37 survivors that have lost friends, family, and spouses as a result of their TBI. People who have vowed to be by your side, for better or worse, disappeared when the situation became “worse.”

Brain injury survivors once were nurses, mechanics, doctors, business owners. A brain injury can happen to anyone. Whether you are on your way home and God forbid get in a car wreck, slip on the ice, or collide while shooting some hoops. What would you do if everyone you loved started trickling away from you? Nothing hurts more than losing relationships with family, friends, and everyday life. While your lives have moved on and you pulled away I was still learning how to get dressed by myself.

If you want to support a loved one who has TBI, drop the expectation of what they are supposed to be. First off, unless you have been there, or have some sort of doctorate in the field, you are not qualified to tell me “how I should be progressing” in order to have you in my life. I have come to peace with my condition. I love every part of myself, even if that’s not good enough for you. I wouldn’t apologize for accidentally breaking my arm and I won’t apologize for accidentally breaking my brain. I am “beautifully broken” and I am proud of how far I have come, even if you don’t understand my journey.

If you ever do find yourself in a predicament like I was in, I hope you are treated with love and respect. That you aren’t abandoned by society because you don’t meet their expectations. I hope friends come by your side, and have patience with you even though you have failed to do so with them. If you find yourself in a situation similar to mine with no one around, know that you can reach out to me. I will be your friend and help you, even if you didn’t treat me with the same respect. Survivors are people that matter, and deserve to be treated as such.

Five Ways I am Different After My Traumatic Brain Injury

1. After my TBI I used to repeat myself often, and here and there I still do. I was OK with people calling me out for it, because it pointed out my much-needed growth. If someone was cold, or made fun of me it would make me feel mad and frustrated with myself. Sometimes it could put me in cycle where I would feel worthless.

I know it can be irritating to hear the same broken record, but it was sad to me that I was that record and couldn’t remember it. I may not have remembered telling the person, but I do remember some people’s reactions and it hurt. Saying things like “That’s right, you had mentioned something about that earlier, thanks for reminding me,” was really helpful. I know there were many times when my mom would pretend it was the first time she had heard something, even if I had already told her 10 times that day. I can’t tell you how grateful I am for her support. She was always kind, gentle, and encouraging; it has allowed me to mostly heal my injury.

2. When my brain would be overstimulated or something wasn’t functioning properly, I would turn into an angry wildebeest. My tongue would lash harsh phrases at people and I wouldn’t have a recollection of everything that I said or did. The brain goes into fight or flight (survival mode). It does what it can to survive.

By yelling and going off on everyone two things tend to happen. The brain produces different hormones and begins to change the chemistry of the brain, and a lot of times people would back away from me which brought down the level of stimulation. Arguing with me would only make the situation worse since my brain would go deeper into survival mode. Even if I was really hateful, I was fortunate enough that my parents understood. Them leaving the room and not arguing was extremely helpful, even if I was arguing something ludicrous like the San Francisco Bay Bridge was in the UK. I would also find a sanctuary in my laundry room. I was so hot (mostly because I was pregnant) and I would lay on the floor in the dark to let everything calm down.

3. Before my TBI I used to travel all the time. It has been a hard thing to not be able to just get on a plane and go. My brain is not able to adjust to altitude or barometric changes. When experiencing these drastic changes my head feels like it’s in a microwave and any minute it’s going to explode like overcooked leftovers. The pain is astronomical and I have cried when it’s too intense. I get extremely nauseous and irritable. I am exhausted by the time I get back to the altitude or barometric pressure I am most acclimated to.

4. I have a tendency to forget to do something easy like mail off a bill or make a phone call. It didn’t help the situation to have someone angry at me for forgetting. It wasn’t intentional and I am still very proud of all the things I do remember. Doing things like getting me sticky notes or organizing a calendar with me were very helpful. I also started relying heavily on my phone to track appointments, phone calls, and any other tasks I needed to do.

5. I have always been very confident and witty. I could crack jokes with the best of them. When my symptoms were really bad I couldn’t even understand a knock-knock joke, never mind tell one. I had a hard time relating to people because they were out doing so many things and I was always in the same routine. Go to appointments, and fight to heal the brain injury. I would eventually be vague with people because I was always telling the same ol’ story and I didn’t want to bore them.

Or I got reluctant to hear questions like “When are you going to be better?” or “When are you going to be back to normal?” I myself couldn’t even answer that question and I felt worthless. I have fought this hard to be where I am and I still didn’t feel good enough for them. Like you will only be by my side if I change back to my old self. And sometimes I would utter rude things to myself like, “Newsflash people, I don’t even remember who I was. How am I supposed to ‘get back to normal’ if I don’t even know what that ‘normal girl’ is anymore?”

I was able to build deeper friendships and relationships with the people that would keep encouraging me. If I disclosed a baby step of progression I would get positive affirmations like “awesome” or “I knew you could do it.” It encouraged me to keep fighting, and I felt some sort of self worth. Like I was finally climbing out of the darkness, into the light.

Follow this journey on My Traumatic Brain Injury.

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Source: How Relationships Can Change After a Brain Injury | The Mighty

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[BLOG POST] 9 Tips to help clear brain fog

How do I say this? I CAN’T THINK STRAIGHT THIS WEEK. Ok, I guess I came up with those words pretty easy but if I want to speak past a 6th-grade grammar level I need a thesaurus.

Many suffering with chronic illness find themselves plagued by a condition known as brain fog.

clear brain fog

You may have also heard of fibro fog in the fibromyalgia community. Same thing! At it’s very worst it can cause a disorienting effect that can leave a person not knowing where they are or where they were headed for 30-90 seconds or more. I haven’t experienced it to that extreme, yet.

My main problems are losing my train of thought mid-sentence, comprehending what I’m reading, and having trouble following conversations. Sometimes it can feel like a bunch of static in my head and I wish I could just tune in to whatever channel needs to be my focus for that moment.

There are a few little tricks I keep up my sleeves to help clear brain fog. I thought I’d share them with you.

    1. Don’t trust your brain. Even though you think of yourself as normally an intelligent person who’s really focused; just face it. For certain periods of time, possibly every day for some, you won’t be able to trust that little gray matter in your skull. Don’t stress about it or feel less of a person – just work with it. Determine that you’ll change how you do certain things so you can manage at your very best!
    2. Don’t panic – you’re not losing your mind. Some individuals get really nervous that they could be developing Alzheimer’s. The two aren’t related and the one doesn’t turn into the other. For example, with brain fog I might forget what you just told me but with Alzheimer’s I may forget who you are.
    3. Make lists! And use them! Use a planner too! I’m getting better at this all the time. For example, I developed a grocery list that is divided into sections according to the aisles in my local grocery store. This really helps me stay on track and focused. I don’t have to keep scanning through a list in the midst of store noise to be sure I grabbed it all; I just start at aisle one and I’m all set.
    4. Sleep. The problems with brain fog are multiplied when you’re tired and wore out. I understand insomnia can come with the territory of chronic illness too. Try your best to do what you can to unwind at night and talk to your dr to see what can be done to help. Insomnia is horrible and can highlight fatigue, fog, and pain – among other problems!
    5. Talk to your doctor about possibly adding some supplements to your mix. I discovered a supplement called ribose from reading a book by Dr. Teitelbaum called Fatigued to Fantastic. D-Ribose is a simple, natural sugar that your body uses in the energy molecules. It also helps process other nutrients as well, such as the B vitamins. As part of my treatment my doctor has me taking B vitamins 3x’s a day; mainly for the fatigue. However, I have noticed a drastic difference with my brain fog on days I don’t take them.
    6. Get oxygen moving in your blood! Exercise increases the flow of oxygen and blood to the brain and helps with the fog. I understand there are days we can barely shower, let alone get out for a walk. For those days, I’ve noticed sitting on my porch, or even in the house in a quiet room for a bit, and breathing deeply helps calm down my mind when it’s racing or foggy and it allows me to focus better.
    7. Cut back on the sensory overload. I grew up in a house where the tv was on almost constantly. Sad to say it’s on way too much in my own home. To top it off I have my cell phone, my Kindle, my computer, my husband, my kids and my grandson all contributing to the amount of input my brain is trying to process at any given moment. On days I’m at my foggiest I find taking some time away from all the media noise helps! I can’t turn off the people in the home, I’ve tried ;). But I can limit those other things!
    8. Uni Task. I don’t know who decided multi-tasking was the benchmark for productive women but they certainly didn’t have a chronic illness or brain fog. I’m not militant about this. Yes, I’ll do other things while I have a load of laundry in the washer but trying to do too much just adds to the already confused state of our minds. Focus on one thing at a time and don’t allow yourself to be distracted by trying to do multiple things at once.
    9. Avoid caffeine. Trust me, a Coke is usually the first thing I want to grab when I need to focus but it only means you’re going to crash later on. Also, because it’s a stimulant it can make all those jumbled thoughts floating around in there move faster-making things worse!

Source: 9 Tips to help clear brain fog


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[BLOG POST] Brain Injury Medicine – Neuro Landscape


Brain Injury Medicine

Individuals who sustain brain injury face a unique challenge with their health professionals. Brain injury is now widely viewed as a disease in the medical field, however patients are not yet granted the benefits and opportunities in treatment as are necessary for disease management. Increasing awareness of brain injury as a disease, and exploring the challenges of brain injury treatment will help us reevaluate our current system.

Brain Injury as a Disease

A brain injury is remarkably complex. Emerging evidence suggests that, like cancer, brain injury may actually be comprised of a number of distinct diseases that vary by the etiology of the injury, the nature of the injury, co-morbid health conditions prior to and since the injury, and factors such as gender, race, age, for example.

When the brain is injured, consequential effects often occur within immune, endocrine, and autonomic nervous systems’ functions. Persons with brain injury can become very sick, very quickly, seemingly only heralded by relatively minor early symptoms. Though we do not fully understand why this heightened period of illness occurs, it is likely a result, in some capacity, of the changes to the body’s systems’ functions.

Challenges of Brain Injury Treatment

Medical professionals working within the confines of our current system are often unable to dedicate sufficient time to a patient with brain injury in order to address the full scope of his or her injury, which includes cognitive, behavioral, communicative, and/or physical disabilities. Furthermore, these medical professionals are rarely able to stay current enough on the case to identify advisable and inadvisable medical practice patterns, thereby increasing the odds of treatment-induced complications.

Patients and their families cannot assume that medical providers are alike in their knowledge and experience. For example, the notion that patients can be best followed by practitioners in their home community is seriously flawed. Locality does not replace the prerequisite for a practitioner with expertise on brain injury. In fact, many of these less experienced practitioners are unaware of the comparative medical fragility associated with brain injury. Many poor medical decisions could have been avoided had the proper brain injury specialist been consulted.

Additional challenges can be found in the person’s inability to fully and competently participate in his or her medical care and decision-making. Cognitive, behavioral, communicative and physical disabilities following brain injury can make it difficult, if not impossible, for a person to recognize changes in his or her health, convey those changes, recognize improvements, or a lack thereof, in health following a medical treatment or intervention, accurately convey medical history or the history of present health problem(s), obtain appointments for procedures or laboratory studies, obtain prescribed medications or otherwise properly adhere to a prescribed treatment regimen. One might conclude that the attendance of an advocate or family member to medical appointments will mitigate such difficulties, and while helpful, such participation often fails to provide improved results.

Reevaluating our Current System

In my career, I have seen many downstream medical decisions result in serious and, sometimes, deadly consequences. These have always been avoidable and unnecessary, and borne out of a lack of knowledge.

A general physician cannot reasonably manage a patient with a complicated cancer, and brain injury is no different in this regard. We need to develop mechanisms that enable a patient with a brain injury all the same benefits as those allowed patients with complicated diseases such as cancer or cardiovascular disease. Simply put, there is no substitute for an individual case being followed closely by an experienced brain injury specialist.

Source: Brain Injury Medicine – Neuro Landscape

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