Archive for category Caregivers

[BLOG POST] Substance Use and Disability – A Look at NIDILRR – Funded Research


Last week, NIDILRR released a Funding Opportunity Announcement for a Disability and Rehabilitation Research Projects (DRRP) Program: Research on Opioid Use Disorder Among People with Disabilities. The announcement followed several months of careful research to write an opportunity that answered the needs of the community in regard to opioid use and disability. Earlier in the year, NIDILRR released a Request for Information on the topic to generate comments, concerns, and ideas from the community on this issue. The result, summarized in a report released May 4th (PDF), provided information about “what is known and what are the most pressing research questions for the disability and rehabilitation research fields.” Among the responses, NIDILRR found that:

  • New evidence suggests that people with disabilities are more likely than the general population to misuse opioids and develop related disorders, but they may be less likely to receive treatment than their peers without disabilities.
  • Barriers to treatment included physical accessibility of treatment centers, limited insurance coverage, and policies that withheld opioid prescriptions without first offering pain management alternatives.
  • People with disabilities involving serious traumatic injury such as spinal cord or brain injuries may be at greater risk of opioid misuse and unintentional death due to opioid poisoning.

Many people with disabilities experience pain on a daily basis and may use opioids as part of their physician-directed pain management. Research is needed in this area to understand how these individuals and their care teams can balance the need to manage pain and the risk of substance abuse. This opportunity is not NIDILRR’s first foray into exploring the connection between disability and substance use disorders. NIDILRR-funded research in this area has included:


(Click the project title to view an abstract and links to any related publications in NARIC’s REHABDATA database)

Integrated Program to Improve Competitive Employment in Dually Diagnosed Clients(Field Initiated 2014-2017)

Treatment Development for Alcohol Craving and Rehabilitation Among Individuals with Co-Occurring Mild Traumatic Brain Injury, Post-Traumatic Stress Disorder, and Alcohol Use Disorder. (Fellowship 2013-2014

Deaf Off Drugs and Alcohol: Evaluating a Technology-Assisted E-Therapy Program for Substance Use Disorder Treatment (Field Initiated 2011-2013)

A National Assessment of the Rates and Correlates of Alcohol and Other Drug Use by College Students with Disabilities (Field Initiated 2008-2011)


The Impact of Alcohol Use on Outcome and Recovery after Traumatic Brain Injury.(Fellowship 2006-2007)

Rehabilitation Research and Training Center on Substance Abuse, Disability, and Employment. (Rehabilitation Research and Training Center 2004-2010)


Rehabilitation Research and Training Center on Drugs and Disability (RRTC 1997-2001) and the RRTC on Substance Abuse and Disability (1993-1997)

Substance Abuse Treatment for Adults with Chronic Mental Illness (Fellowship 1994-1995)

Substance Abuse as a Barrier to Employment for Persons with Traumatic Brain Injury.(Disability and Rehabilitation Research Project 1991-1995)

Pre 1990

Innovation Grant to Develop a Unique Rehabilitation Curriculum to Train Rehabilitation Counseling Masters Students in Alcoholism Counseling to Work with Multidisabled Alcoholics. (Innovative Research Projects, 1987-1988)

Medication Effects on Attention and Behavior in Head Injured Patients. (Field Initiated 1986-1987)

Relation of Substance Use to Rehabilitation Outcome in Persons with Spinal Cord Injury.(Field Initiated 1986-1987)


Explore publications from these projects and other members of the NIDILRR community in the area of substance use disorders:

If you are a person with a disability who is concerned about substance use disorder, please visit the Behavioral Health Treatment Services Locator at or call your local 211 to speak with a community-level information specialist who can help you find treatment in your area.


via Substance Use and Disability – A Look at NIDILRR-Funded Research | Collection Spotlight from the National Rehabilitation Information Center


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[ARTICLE] Psychological Resilience Is Associated With Participation Outcomes Following Mild to Severe Traumatic Brain Injury – Full Text

Traumatic brain injury (TBI) causes physical and cognitive-behavioral impairments that reduce participation in employment, leisure, and social relationships. Demographic and injury-related factors account for a small proportion of variance in participation post-injury. Personal factors such as resilience may also impact outcomes. This study aimed to examine the association of resilience alongside demographic, injury-related, cognitive, emotional, and family factors with participation following TBI. It was hypothesized that resilience would make an independent contribution to participation outcomes after TBI. Participants included 245 individuals with mild-severe TBI [Mage = 44.41, SDage = 16.09; post traumatic amnesia (PTA) duration M 24.95 days, SD 45.99] who completed the Participation Assessment with Recombined Tools-Objective (PART-O), TBI Quality of Life Resilience scale, Family Assessment Device General Functioning Scale, Rey Auditory Verbal Learning Test, National Adult Reading Test, and Hospital Anxiety and Depression Scale an average 4.63 years post-injury (SD3.02, R 0.5–13). Multiple regression analyses were used to examine predictors of PART-O scores as the participation measure. Variables in the model accounted for a significant 38% of the variability in participation outcomes, F(13, 211) = 9.93, p < 0.05, R2 = 0.38, adjusted R2 = 0.34. Resilience was a significant predictor of higher participation, along with shorter PTA duration, more years since injury, higher education and IQ, and younger age. Mediation analyses revealed depression mediated the relationship between resilience and participation. As greater resilience may protect against depression and enhance participation this may be a focus of intervention.


Following traumatic brain injury (TBI), participation in employment, education, leisure, and relationships is often significantly reduced, leaving individuals substantially less integrated in their communities (14). As a result, many individuals spend increased time at home, straining family and other relationships (5). Given that TBI occurs commonly during young adulthood (6), participation deficits coincide with a critical period of development in which individuals are completing education, establishing a vocation, leaving home, and forming important lifelong relationships. Failure to attain these goals may profoundly impact their sense of self, mental health and general well-being. Reduced participation often extends beyond the acute recovery period and continues to be associated with poorer quality of life up to two decades after injury (7). Arguably participation in these life roles, including employment, education, leisure and relationships, represents one of the most important and objective indicators of injury outcomes.

Numerous variables have been associated with participation outcomes post-TBI, including injury-related and demographic variables as well as post-injury environmental and personal factors. Injury severity, cognitive difficulties, and limb injuries with related pain and impact on mood, affect an individual’s ability to engage socially and often present significant barriers to education and employment (816). Injury severity is a particularly well-researched predictor of participation outcomes, with duration of post traumatic amnesia (PTA) having the most robust association (1721). With respect to demographic factors, younger age, higher premorbid education level, higher premorbid IQ, and being employed prior to injury have all been associated with better participation outcomes (102229). Notably, older age at injury has been found to predict both worse participation overall as well as progressively worsening participation over time (10). Although gender does not appear to be directly associated with participation (30), it may have an indirect association, for example through mood and pre-injury education (14). Post-injury psychological functioning, particularly depression and anxiety, are also important predictors of participation outcomes (10123133). The impact of family functioning on participation is thought to be both direct, and through association with emotional well-being (3435).

Due to this broad range of factors influencing outcome, research has moved toward a multivariate approach to prediction of participation outcomes following TBI (24363738). These models contribute to a more comprehensive understanding of participation outcomes; however, the average amount of variance accounted for by predictive models is around 30% (21). This suggests there are additional predictive factors yet to be identified. One such factor that has increasingly gained scholarly recognition, due its positive association with quality of life and well-being outcomes among different clinical populations, is resilience.

Resilience has been conceptualized as a process of adaptation to adversity or the ability to bounce back after trauma or adversity. Resilience arguably influences the extent to which a person is able to resume important life roles after an injury. Resilience may impact participation outcomes directly through facilitating or promoting return to normal life or the development and achievement of new life goals (39), and indirectly through its effects on improved well-being, quality of life and psychological adjustment. Participating in employment, education, leisure, and relationships represent fundamental areas of participation. Resilience has been positively associated with physical and emotional well-being in individuals with cancer (40), Parkinson’s disease (41), diabetes (42), chronic spinal cord injury (43), multiple sclerosis, spina bifida, stroke, and posttraumatic stress disorder (4445). There has been less resilience research in TBI, with only one study to date examining the association between resilience and participation. Notably, it has been suggested that the study of resilience after TBI poses a distinct challenge, in that the skills characteristically associated with resilience are typically impaired after TBI (4547). For example, resilience requires emotional stability, a positive outlook, good problem-solving skills and social perception (47); however, TBI is commonly associated with impaired executive functioning (4849), irritability and aggression (5051), depression (3345), and difficulties with social perception (52).

The little research that has focused on resilience after TBI has been largely limited to patients with mild TBI, in whom no studies have examined impact on participation. In this group, greater resilience has been associated with less reporting of post-concussional and post-traumatic stress symptoms (5355), reduced fatigue, insomnia, stress, and depressive symptoms, as well as better quality of life (56). One study found that greater pre-injury resilience was significantly associated with greater post-concussion symptom severity 1 month post-injury (57), perhaps reflecting insufficient time for participants to “bounce back” (44), or overrating of pre-injury resilience levels, a phenomenon known as the “Good Old Days”(58).

Only three studies have examined resilience in individuals with moderate to severe TBI, of which one examined an association with participation. Marwitz et al. (39), conducted a large (n = 195) longitudinal study and found that resilience was significantly associated with participation over the first 12 months post-injury (39). Other studies have associated higher resilience in individuals with moderate to severe TBI with fewer depressive and anxiety symptoms, better emotional adjustment, use of task oriented coping and greater social support (4445). However, one of these studies used a sample of individuals who were actively seeking help with adjusting to changes post-injury, possibly biasing the sample toward those experiencing greater adjustment problems (45).

The aim of the present study was to examine the relative association of resilience, as well as demographic, injury-related, cognitive, emotional, and family factors with participation (productivity, social relations and leisure) following mild to severe TBI. To the best of our knowledge, this is the first study to examine the association between resilience and participation outcomes more than 12 months after mild to severe TBI. This critically extends previous research by examining the impact of resilience across the spectrum of TBI severity, from mild to severe, and how this association influences outcomes beyond the acute post-injury period. It was hypothesized that resilience would make an independent contribution to participation after TBI, in a model that would include demographic variables (gender, age, pre-morbid IQ, education, pre-injury employment), injury variables (injury severity, cognitive functioning, limb injury, time since injury) and post-injury personal and environmental factors (depression, anxiety, family support).[…]


Continue —> Frontiers | Psychological Resilience Is Associated With Participation Outcomes Following Mild to Severe Traumatic Brain Injury | Neurology

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[BLOG POST] Why do people act differently towards a person after their TBI?

Why do people act differently towards a person after their TBI?

Why do people act differently towards a person after a TBI? Many times, it’s because they can’t handle the truth!

By Bill Herrin

After a traumatic brain injury, acceptance is one of the first steps toward recovery…even if recovery is a long way off. When you evaluate your own personal situation and work to be content within your life’s new parameters – that is basically acceptance. Although TBI can make a huge change in a survivor’s behavior, patience, temper, attitudes, etc. – it also can cause a huge change in the people around us – and in how they act toward us. The fact is that people may not be able to handle the truth because the truth they’re facing is that you’ve changed. You’re still the same person that they know and love, but it’s the adapting part that is awkward for them (which, in turn, makes it awkward for you, too). Brain injury not only affects the TBI survivor, but it affects everyone in their life. This is one of the parts of TBI that can bring misunderstandings, judgment, and often, isolation…the truth is hard to handle for family and friends. Why? Because they don’t want to upset you, or possibly just don’t know what to say. Often, it’s no more complicated than that.

Workarounds, ideas, and other solutions

The following excerpts are from Lash & Associates tip card titled “Coping with Survival After Brain Injury.”

Brain injury has an odd way of attacking your self-esteem and self-confidence. Maybe you used to consider yourself brilliant, attractive,
handsome, beautiful and just wonderful. Brain injury has a way of landing right on your self-confidence center. Your worth as a person – both before and after your brain injury – is about more than how well you can do this or that. Don’t think of yourself as less of a person since your brain injury because of all the things you can’t do. Look at the love and warmth that you can share. Others may value you for the contents of your soul.*

With that said, how you think about your situation and approach to life could improve – despite how others may acttoward you? Here are a few more great bits of advice from the tip card titled “Coping with Survival After Brain Injury.” You’ll find that acceptance takes the focus off complaining, of fault-finding of others, and will make you see things in a more meaningful and positive light.*

For example, You can moan, groan, complain, be angry, and spend your time asking WHY did this happen to me? You can be angry at whoever and however, it happened. Be angry on a daily basis. Drink and do drugs to escape…OR you can acknowledge and accept that it happened. You certainly don’t have to like it or be happy about it, but acknowledge that it happened and move forward. Do the best you can with whatever you can. Work on getting to your “New Normal” which isn’t going to be the same as your “Old Normal.”*

If you ask yourself, whether you are religious or not, “Why did God do this to me?” – maybe instead, take the approach of asking yourself, “I was saved for some reason, what is it?”*

You may figure that you have enough of your own problems to deal with and avoid helping others – OR you could work to prevent brain injuries. Tell people your story in the hopes that they won’t have to walk down this road.*

If you let your anger and sadness spill throughout your life, and you take it out on those around you-you could (instead) be sad, but acknowledge that you aren’t the same as you used to be. Meet new people who may understand some of your challenges.*


Do you see the sharp contrast in thinking and the approach here? One approach is wallowing in self-pity, and the other changes the focus to living life to the utmost, loving people despite how they may act, and hopefully inspiring others that are also survivors. When you feel angry or sad that your “terrible family or friends” are not loyal, or may not come to visit you enough – look at the other side of the coin – maybe your partner / husband / wife / parents / kids / siblings / other friends stand by you, thank them sincerely and deeply for their loyalty, love and commitment. They didn’t ask for this any more than you did!*

*(Reference: From the Lash & Associates tip card titled “Coping with Survival After Brain Injury,” by John W. Richards, MBA, MSW, Survivor.)


Coping becomes Hoping

When it comes to family and friends’ emotional reactions to your TBI, there are some things to keep in mind. When an individual has a brain injury, most families go through the entire range of emotions. There is fear, anger, hope, despair, and even joy at times. These emotions are often seen as negative (fear, despair, anger) or positive (joy and hope). Each emotion affects how a family member acts and responds to others. Try to use your emotions effectively rather than allowing them to control or overwhelm you.**

You may have felt like you were on a roller coaster of emotions soon after the brain injury occurred. Every day there were unfamiliar terms, complicated medical information and difficult questions that often could not be answered. Your emotions may change over time but they continue to be powerful feelings. Every member of your family may feel a wide range of emotions. Some may be similar to yours; others may be different. All emotions need to be respected. It’s important to let everyone in your family know that it’s okay to feel angry, afraid, sad, helpless, and overwhelmed. It’s what you do with these emotions that matter.**

One of the hardest things to realize when you’ve been through huge life changes after TBI is that negative emotions, anger, sadness, and fear can be negative and destructive. But without them, you would lose valuable energy and perspective. They can help you not only survive, but thrive in the aftermath of a brain injury to you, or a member of your family. Imagine that! The takeaway from negative fear, sadness, anger, etc., is that it motivates you to improve your attitudes – and the result will be an overall improvement of your outlook on life, despite any setbacks.**


Handling Emotions When People Act Differently After a TBI

In closing, here is a small, but important checklist that could offer some “life hacks” to get on the right track, and away from feeling bad 
about your situation…this is only a small list, and there could certainly be more added – but in the interest of time, these are good to start off with.

Tips for handling your emotions…

✓ Stay in the moment.

Rather than wishing for the moment to pass, ask yourself what exactly this moment is about.**

✓ Allow emotions to subside or quiet.

Instead of trying to hold onto an emotion, be aware when it lessens. Notice the emotion that replaces it. Why this emotion now? What triggered it? How can it help you?**

✓ Review and reflect.

Keep a journal of your different emotions and experiences. It is often easier to understand your feelings after some time has passed. Reading your journal days, weeks, months or even years later gives you a different outlook. This can help you understand what you were feeling and why. Review and reflection can help you use your emotions effectively or change them.**

✓ Find someone you trust.

If you are feeling overwhelmed by an emotion, share it with someone you trust. Ask for the person’s views and ideas. By sharing the emotion, you will find it more manageable and less overwhelming.**

✓ Consider the opposite emotion.

Sometimes an emotion can block you from taking action or it may prevent you from getting action from someone else. When this happens, try choosing the opposite emotion and ask yourself what you’d do if you felt that way instead. For example, if you are feeling angry but need to make a request, ask yourself, “How would I say this if I were feeling warmly towards this person?”**

**Excerpted from “Emotions – Hope after brain injury”, by Ann V. Deaton, Ph.D.


Final Thoughts

The takeaway (hopefully) is that working on acceptance of your new life, and then working through your feelings (about yourself and others’ actions toward you) will bring positive change to everyone involved. Life is precious, and sometimes people just need time to sort things out – either as a TBI survivor or as the friend or loved one of a TBI survivor. Make the most of each day. Progress comes in different forms, different levels, and sometimes it’s elusive – but hope springs eternal. Choose hope.

Lash & Associates offers lots of books and products for the TBI Community, click here to see our monthly specials!
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[BLOG POST] Miscommunication …Straight From the Horse’s Mouth

By Bill Herrin

Communication is the lifeline of any relationship!


Work to take frustration out of communication

When a TBI happens, the survivor is the primary person left with the biggest life changes of all. However, family and friends are also impacted in a huge way. For survivors of a TBI, finding ways to communicate about worries, frustrations, physical issues and emotions – as well as conveying all of these things to loved ones is not only tiring – sometimes it just doesn’t come out in a way that’s easy to understand. That’s miscommunication. Your grasp of your life after TBI is going to depend on several key factors: acceptance, progression, facing denial, and finding the inner strength to move on with your “new normal.”

That’s an easy thing to tell someone, but living it out is a challenge that every person will handle differently – as varied as each brain injury (and its effects) can be. Your mental and emotional connections to others are going to be different. Responses to how you communicate can be different as well…all leading to miscommunication on both ends of any conversation. That can lead to frustration, anger, hurt feelings, and a host of other things. We’re going to take a look at how to soften the blow of harsh words, misunderstandings, missed points, and overall miscommunications.

Saying how you feel

One of the key things to consider as a survivor of TBI is this: No matter how you feel, try to consider how the people all around you are feeling as well. They may be feeling bad for you, or they may be feeling time constraints from caregiving, or possibly just feeling overwhelmed or concerned that you’ve changed since your TBI. Communication of thoughts between the two of you (or between you and all of them) is critical to your successful recuperation, to your emotions, and your relationships. This also goes for your family and friends – they should strive to understand that you are affected by their attitude and communication with you. It’s always a two-way street, and it even was before TBI came into the picture – but, now it’s even more critically important. Miscommunication can create even more stress.

They’ve noticed change

Empathy makes things better for everyone involved

Friends come and go, many last a lifetime, but family is forever. Keep in mind, family members can be your best advocate – or your worst critic. The point is this: it’s best to surround yourself (to the best of your ability) with people who understand how you’ve changed and they embrace the change. Empathy is one of the strongest healers – having an understanding of what someone else is experiencing, and “putting yourself in their shoes” can make the worst situation more bearable for everyone involved. This goes for the survivor, family, friends, and co-workers, etc. Seeing how everyone deals with the your TBI can bring a team together, instead of having miscommunication and strife. Strife is going to happen, because nobody is perfect, but remember that we need each other!

Trying to read people

When we talk with each other, half of our expression comes from….well…our expressions. Our facial expressions and body language say a lot, and can be subtle or direct. Survivors of TBI may lose their ability to take expressions or body language into account, or even misread what it being intended. This is also miscommunication. For family and friends, a natural rapport and emotional (as well as physical) healing will usually improve with time. Remembering that is key to maintaining a friendship with the TBI survivor in your life. They’re working toward their new normal, and their frustrations are going to be running high as well. Work toward better communication together!

Expression and tone of voice

Try not to get discouraged

Voice, diction, and clarity of speech can often be affected after a TBI. As a survivor of TBI, strive to work on your speech patterns – with a clinician if possible, or with a caregiver or friend…and even on your own if possible. Enunciation is only going to improve with practice – kind of like playing a musical instrument. Practice, practice, practice! You’ll never get further without having the will to improve. It’s that simple – nobody can make you want to improve, but they can encourage you to do it. One of the bigger parts of miscommunication, beside changed behaviors and expressions is the simple fact that clarity of speech makes a huge difference. Some may never be able to achieve their previous language skills, but communicating what you feel, need, think, want, etc., as clearly as possible is going to be the reward for all your hard work.

Changes in relationships

Whether a TBI survivor is married, single, a child or teen, man, woman, or anything else – relationships are the fuel that keep most people pushing ahead. Since relationships require effort from all parties involved, be aware that brain injury is going to “throw a wrench” into the mix. Many people want to solve problems – they’re “fixers,” full of suggestions and comments, and sometimes criticism. This can bring a lot of tension into a relationship. If you can work to remember one thing about relationships, it’s this: True friends love you for who you are, and they’ll meet you wherever you’re at. Despite being different after TBI doesn’t mean you’re a completely different person, but it does mean that parts of your personality, likes, dislikes, and other things have changed. If someone points out to you that you’re not the same person any longer, consider telling them this: “Think of me as a house. I’ve made some new additions, I’ve changed some things around, I’ve gotten rid of some things, and maybe I don’t seem quite the same. But I’m still the same house…just a remodeled one, now.” Maybe that simple analogy will explain that you’re always going to be you, but changes do happen!

The bottom line

Frustration can make your day seem long

This particular blog is purposely not referencing clinical books, studies, findings, or scientific facts. The goal here is to help families and TBI survivors see themselves in a different light, as a team – as co-conspirators in a battle against TBI, that they both are fighting together. A TBI survivor needs you. You need and love them. Don’t let miscommunications become a wedge between you, because they’ve changed. Overlooking an outburst of frustration of a TBI survivor could make the rest of their day much better. For a survivor of TBI, letting go of a snide comment about them by a loved one who is frustrated or tired, could mean the difference in their day. Communicate with each other as clearly as you can, and always work toward better communication. It’s the key to progress. I hope that you can find contentment in life if you’ve experienced a TBI. I also hope that you will find it as a caregiver, family member, or friend of a TBI survivor. The words of a very well-known college basketball coach come to mind – Coach Jim Valvano, from North Carolina State University was battling terminal cancer, and in one of his last speeches to his adoring public he said “Don’t give up. Don’t ever give up.” Those are words to live by.

via Miscommunication …Straight From the Horse’s Mouth – Brain Injury Blog With Free TBI Information

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[BLOG POST] Misinterpretations, Reactions, and Anger after TBI (Traumatic Brain Injury)

You Did That on Purpose!  –  Misinterpretations and Anger after Brain Injury

By Dawn Neumann, Ph.D., FACRM

Imagine that you are waiting in line at the store and someone cuts in front of you.

A) Do you think the person cut in front of you on purpose or was trying to be mean?

B) Or do you think maybe he or she did not see you and it was an innocent mistake or there was some kind of emergency?

How you interpret this situation will affect how angry you will feel and how you will react to the situation. If you chose option A, it is likely you will be more irritated and angry than if you chose option B.

Irritability and anger are common side effects of traumatic brain injury (TBI). How we interpret others’ actions can lead us to feel irritated and angry toward those involved. Recent research suggests that one reason irritation and anger are more severe and common after TBI may be due to misinterpreting others’ harmless actions.


It is not always so obvious why people behave the way they do. So, it is normal to try to figure out the reasons behind others’ actions: What do they really want? Why did they do what they did?  If we think someone did something to us on purpose, of course, we are going to get mad, and possibly even react.  But for the most part, people without a brain injury

usually give others’ the benefit of the doubt and assume that others’ actions are not intentionally mean.  For example, many people will assume the person who cut in front of you on line did not see you and it was an innocent mistake. As a result, it does not irritate or anger them that much.  In contrast, it appears that more people with a brain injury assume others’ actions are intentionally mean.  More people with a brain injury are likely to choose option A and feel more irritated or angrier.


What is the potential impact of this type of thinking?

  • Socially inappropriate and/or violent behaviors towards others.  Someone who thinks this way and gets angry is more likely to respond aggressively (yelling, pushing), especially after a brain injury when it is hard to stop the impulsive desire to do something about it. This behavior would not sit well with others.
  • Legal troubles, criminal charges, and/or incarceration. This type of thinking could lead to violent and illegal behaviors.
  • Strained relationships and stress among family and friends. Because family members do not see the
    situation the way you do (They see Option B versus A), angry and aggressive responses to innocent situations are often unexpected, embarrassing, stressful, and scary.  Family members and friends often say it is like having to walk on

    eggshells around the person with the brain injury.

  • Social isolation. Strained and stressed relationships can often push family and friends away.
  • Decreased community participation. Because anger and aggression are not usually accepted or socially appropriate, people with these challenges may have a hard time being an active member of their community. This can also affect your work-related goals. Misinterpretations of your boss’s actions or that of your co-workers or a customer are going to make it a lot harder for you to get a job or keep a job.


Why are People with a Brain Injury More Likely to Think this Way?

First, it is important to note that not everyone with a brain injury thinks this way. People with higher level thinking difficulties, problems interpreting social cues, and those with anxiety are more prone than others to assume others’ actions are intentional or mean. Because these are common problems after brain injury, it makes them more likely to misinterpret others’ behaviors.


Some advice:

  • Give people the benefit of the doubt. Most likely you do not have enough information to know for sure why someone did something. This means you cannot assume your interpretation is true. Remember that most of the time people are probably not even aware of how their actions affected you or they did not intend to cause you harm or lead to an unpleasant outcome for you.
  • Think about alternatives. Come up with a few innocent reasons to explain the other person’s behavior.
  • Perspective taking. Try to think of the situation from the other person’s perspective. If you were in their shoes, what might have prompted you to do what they did? Try to empathize with their situation. If it is hard to imagine, role play and pretend you are the other person.
  • Don’t jump to conclusions. If you are not sure why someone did something, consider asking them why (in a nice way) instead of making assumptions.
  • Consider counseling. Psychologists and Neuropsychologists specialize in helping you see and think about things differently.


Dawn Neumann, Ph.D., FACRM
Associate Professor and Research Director PM&R, Indiana University School of Medicine and Rehabilitation Hospital of Indiana Director, IU InterFACE Center at RHI (A Human Observation Lab)

via Misinterpretations, Reactions, and Anger after TBI (Traumatic Brain Injury)

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An image depicting a person in a wheelchair, a person with crutches, and a person sitting on a sofa inside a house, basically highlighting people with disabilities staying at an airbnb location.

More often than not, people with disabilities have to call up hotels or other places where they are staying beforehand, asking whether the room they will be staying in has suitable accommodations for them. In many cases, travelers face difficulties because of lack of accessibility features, which leaves them with a not so satisfactory experience. In order to provide reasonable accommodations to travelers with disabilities, AirBnb has introduced a set of 24 filters that will help them find homes that will make their stay worthwhile, provide them a lot more independence, and allow them to enjoy their vacation a lot more with the least amount of frustration.

If you go to now, and search for “Homes” (accessible filters don’t show up for anything besides homes, like experience, restaurant, etc.), you will be provided with a new section called “accessibility” that lists the following filters:

Entering the home

• Step-free access
• Wide doorway
• Well lit path to entrance
• Flat path to front door
Getting around
• Wide hallways clearance Hallways at least 36″ (90cm) wide.
• Elevators If needed, contact hosts about the width.


• Step-free access
• Wide doorway
• Accessible-height bed
• Wide clearance to bed
• Electric profiling bed


• Step-free access
• Wide doorway
• Roll-in shower
• Bathtub with shower chair
• Accessible-height toilet
• Wide clearance to shower, toilet
• Fixed grab bars for shower
• Handheld shower head
• Shower chair

Common areas

• Step-free access
• Wide entryway


• Disabled parking spot There is a city-approved parking spot or a parking space at least 8ft (2.4m) wide.

However, getting to these filters may be just a bit tricky. Here’s how you get to them.

In the search box, type a location you plan to visit. Make sure to search for “Homes”.

type a location in the search box and make sure to choose homes Once the search results appear, click “more filters”.

click more filters to get to all the accessibility section


Under more filters, look for the Accessibility section and then click “choose home features”.

under Accessibility, click choose home features.

This is where you will see a list of 24 accessibility related filters. Choose the ones you need for your stay, and click Save. Your search results will be updated now.

choose all filters you require under "accessibility needs".


To see what accommodations a specific listing provides, click on it and scroll to the Accessibility section.


And there you have it. AirBnb’s filters are very specific, and can help you find a home that will meet your exact needs in terms of accessibility. Next time you travel, give these filters a try, and let us know how they worked out for you!

Source: Fast Company

via AirBnb Now Provides 24 Accessibility Related Filters For Travelers With Disabilities – Assistive Technology Blog

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[WEB SITE] Executive dysfunction after brain injury

Executive dysfunction after brain injury

Executive dysfunction is a term for the range of cognitiveemotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after acquired brain injury and has a profound effect on many aspects of everyday life.

This page explains what executive functions are, why they are so important and which part of the brain is responsible for controlling them. It then provides an overview of the causes, effects, assessment and rehabilitation of executive dysfunction. Some general coping strategies are also suggested to help brain injury survivors to compensate for impairments.

What are executive functions?

Executive functioning is an umbrella term for many abilities including:

  • Planning and organisation
  • Flexible thinking
  • Monitoring performance
  • Multi-tasking
  • Solving unusual problems
  • Self-awareness
  • Learning rules
  • Social behaviour
  • Making decisions
  • Motivation
  • Initiating appropriate behaviour
  • Inhibiting inappropriate behaviour
  • Controlling emotions
  • Concentrating and taking in information

Most of us take these abilities for granted and we effortlessly perform extremely complex tasks all the time in our everyday lives. Let us consider, for example, the role of some executive functions in a ‘simple’ activity like cooking a meal:

Motivation – Wanting to make a nice meal and making the decision to start doing it.

Planning and organisation – Getting all the ingredients and thinking about the right times to start them cooking so they will be ready at the same time.

Monitoring performance – Checking the food is cooking properly and the water isn’t boiling over.

Flexible thinking – Lowering the heat if the food is cooking too quickly or leaving it longer if it is not cooked.

Multi-tasking – Washing the laundry and putting it out to dry, while still remembering to attend to the food at the right times.

These complex skills require advanced brain functions. The brain areas involved are described in the next section.

Which part of the brain controls executive functions?

Executive functions are controlled by the frontal lobes of the brain. The frontal lobes are connected with many other brain areas and co-ordinate the activities of these other regions. They can be thought of as the conductor of the brain’s orchestra. Injury to the frontal lobes is the most common cause of executive dysfunction. Occasionally, damage to other brain areas which are connected to the frontal lobes can also impair executive functions.

The frontal lobes cover a large part of the front of the brain, directly behind the forehead. The diagram below shows their location:

The frontal lobes can be damaged by any form of acquired brain injury, such as stroketumourencephalitis  and meningitis They are particularly vulnerable to traumatic brain injury, due to their location at the front of the brain and their large size. Even a blow to the back of the head can cause frontal lobe injury because the brain is knocked back and forth in the skull and the frontal lobes bang against bony ridges above the eyes.

What is executive dysfunction?

The importance of executive functions is shown by the difficulties caused when they don’t work properly. Since the executive functions are involved in even the most routine activities, frontal lobe injuries can lead to deficits in cognitive (thinking) skills, personality and social behaviour.

The most common effects of executive dysfunction are summarised below:

Difficulties with initiating, organising and carrying out activities

  • Loss of ‘get up and go’.
  • Problems with thinking ahead and carrying out the sequence of steps needed to complete a task.

This can often be mistaken for ‘laziness’ or a lack of motivation and energy.

Rigidity in thoughts and actions

  • Difficulty in evaluating the result of actions and reduced ability to change behaviour or switch between tasks if needed.

Poor problem solving

  • Finding it hard to anticipate consequences.
  • Decreased ability to make accurate judgements or find solutions if things are going wrong.


  • Acting too quickly and impulsively without fully thinking through the consequences. For example, spending more money than can be afforded.

Mood disturbances

  • Difficulty in controlling emotions which may lead to outbursts of emotion such as anger or crying.
  • Rapid mood changes may occur. For example, switching from happiness to sadness for no apparent reason.

Difficulties in social situations

  • Reduced ability to engage in social interactions.
  • Finding it hard to initiate, participate in, or pay attention to conversations.
  • Poor judgement in social situations, which may lead to saying or doing inappropriate things.

Difficulties with memory and attention

  • Finding it harder to concentrate.
  • Difficulty with learning new information.
  • Decreased memory for past or current events, which may lead to disorientation.

You may hear different names for these symptoms. They are commonly referred to as executive dysfunction but many people use the term ‘dysexecutive syndrome’ or simply ‘frontal lobe problems’. They are sometimes referred to as a syndrome because several of the symptoms usually occur together.

It is important to remember that not everyone with executive dysfunction experiences all of these problems. The symptoms can range from subtle effects, which only close friends and family members may notice, to extreme and problematic behaviour.

The effects of executive dysfunction on day-to-day life

It is often hard for people with frontal lobe injuries to explain the difficulties they are experiencing, often because they may be unaware that their behaviour is inappropriate. Their behaviour may appear to be very anti-social and can be misunderstood as depression, lack of motivation, selfishness, or aggression. Relationships with others may be negatively affected as a result.

Executive functioning problems may also have a significant emotional impact and can lead to feelings of frustration, exhaustion, embarrassment and isolation. It can also be very difficult to return to work due to problems with multi-tasking, organisation and motivation. An inability to prioritise and complete tasks also makes working life difficult.

It is important to be aware of the fact that these behaviours occur as a result of brain injury and are not intentional. Specialised input from rehabilitation specialists, such as neuropsychologists and occupational therapists, can help to compensate for the problems.

The following sections provide an overview of assessment and rehabilitation, before providing some practical coping strategies.

Assessing executive dysfunction

The initial assessment of executive functioning after brain injury will usually be carried out by a clinical neuropsychologist. The assessment provides detailed information about an individual’s cognitive, emotional and behavioural deficits. The results can then assist in planning rehabilitation strategies to manage the problems.

During an assessment, the neuropsychologist will consider the following questions:

  • What are the main problems for the individual and their family?
  • How do the problems affect functioning in everyday life?
  • What are the person’s goals and can they go back to work/college/school?
  • To what extent are the executive deficits related to other problems in areas such as language, memory and perception?
  • How do the person’s abilities compare with others of the same age, background, gender and with injury to a similar area of the brain?
  • How are the person with brain injury and their family coping?
  • What kind of rehabilitation should be offered?

Neuropsychological assessments involve a range of different standardised tests, which are designed to measure different aspects of cognitive functioning. Some of these tests are in a questionnaire, puzzle or game format, while others take place in a real-world environment. It is very important that the tests are completed without prior knowledge or preparation in order for them to accurately reflect an individual’s abilities. For that reason, no details of specific tests are included here.

It is important to remember that there are no passes or failures in the assessments. They simply provide an indication of areas that need help and rehabilitation, so there is no need for people to worry about their performance but simply to complete the tasks as best they can.

Rehabilitation of executive dysfunction

Rehabilitation of executive dysfunction can be challenging and requires an individualised approach to treatment. The rehabilitation programme for each patient will depend on their goals, the nature of their difficulties, selfawareness, readiness to engage in treatment, level of social support and presence of other issues such as mood disturbances.

An important part of the rehabilitation process is educating the person about the effects of their injury. This can help increase the person’s insight and understanding of what has happened. For that reason, reading this factsheet or other Headway information materials may be helpful for both survivors and their family members.

If you feel that you or someone you know would benefit from rehabilitation then the first step is to ask a GP if a referral is available, preferably to a neuropsychologist initially. If there are no NHS referrals available then it may be possible to visit someone in private practice.

For more information on this subject see the Headway booklet Rehabilitation after brain injury, or visit the ‘Rehabilitation after brain injury‘ section using the link on the right. Also, the Headway helpline can talk you through the referral process and signpost you to organisations that can help.

Coping strategies for brain injury survivors

Because executive functions are such a vital part of our everyday lives, it is important to find ‘survival strategies’ when problems arise. Here are a few suggestions of strategies that may help if you have difficulties yourself:


Allow yourself plenty of time to plan activities and record your plans, using as many aids as you find helpful (such as calendars, diaries, electronic timing devices, mobile phones and pagers).

  • When planning your day, week, or a particular activity use a step-bystep approach, dividing the activity into manageable ‘chunks’.
  • Use checklists and tick off each part of the activity that you have accomplished. This will help you to stay on track.
  • Mentally rehearse your plans.
  • Discuss your plans for the day with others. They can help you to write down a step-by-step checklist of the different actions for that day.
  • Similar strategies can be used for longer term planning, such as appointments you need to make. Discussing your plans with others will make you more likely to remember and the other person can remind you of things if necessary.
  • Step-by-step checklists can be placed in key locations in the house in order to remind you of the different sequences to go through to do a task, such as preparing a meal.
  • Prepare a weekly routine for tasks like shopping, washing and tidying the house. Knowing that, for example, Monday is shopping day, will make you more motivated to get the task done.
  • Try to develop back up plans in advance, rather than when problems arise.

Many strategies for overcoming memory problems can also be helpful for difficulties with planning. See the Headway factsheet Coping with memory problems – practical strategies for more information.


  • If you feel unable to manage your emotions, it may help to talk to your doctor about this. They may be able to refer you to a form of therapy that will work for you, such as cognitive behavioural therapy (CBT).
  • It may be helpful for others to make allowances for the difficulties you may experience in controlling your mood. When you feel very upset, it may be better for the other person to try to calm the situation in the short term and discuss it with you later.
  • Others may need to make allowances for changes in your behaviour and personality. It is important for them to remember that the changes are a result of the injury and not because you are being lazy, self-centred or difficult.

Social difficulties

  • Trusted friends or family members could help you by reminding you of what may be the most appropriate thing to do or say if you are struggling in social situations.
  • It may help to mentally prepare for social situations and to think about any difficult situations that have occurred before in similar environments.

Executive dysfunction from a carer’s point of view

Caring for a person with executive deficits can be a full-time job and living with personality and behaviour changes in a relative or friend can be very distressing.

Problems that carers may experience include:

  • Stress, anxiety or depression
  • Increased responsibility
  • Strained relationships
  • Reduced communication with partner
  • Restricted leisure/social life
  • Reduced sexual and emotional intimacy with a partner
  • Feeling tired and frustrated

It is important for family members, carers and friends to access support for their practical and emotional needs. Input from the rehabilitation team can help and some people find peer support groups for carers useful. Headway’s Groups and Branches offer valuable support for both survivors and family members. It is also important to see a GP, who will be able to refer to local counselling and therapy services where they are available.

For further information see the Headway booklet Caring for someone with a brain injury, which can be obtained free-of-charge from the Headway helpline, or visit the ‘Caring‘ section for more information. The helpline can also provide support and refer to local Groups and Branches.


The frontal lobes are commonly affected by acquired brain injury. Damage to the frontal lobes is likely to cause symptoms which are collectively termed executive dysfunction.

The diverse ways executive difficulties present themselves mean that assessment and rehabilitation are not straightforward. However, with appropriate rehabilitation and the use of coping strategies, many people can make good recoveries and learn to manage their difficulties.

via Executive dysfunction | Headway

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[BLOG] Unconventional Grief: Grieving someone Alive

Grieving Someone Alive


Grieving someone alive is not a conventional form of grief that is often talked about, but is a real issue that is faced by the living. Death is often viewed as the base requirement for grief but mourning the deceased is only one facet of death. If you have never experienced this, you likely do not understand what we’re talking about. How can you grieve for someone that you haven’t lost? If you have experience this sort of grief, you probably are cheering inside your head that someone has finally put to words what you’re feeling.

Grieving for someone alive, is not the same as anticipatory grief. Anticipatory grief is the type of grief that comes about when you know that you will soon be experiencing a loss, such as when a loved one is dying or in the hospital. If you are experiencing anticipatory grief or looking for resources on it, please visit the following link:


If you’re not familiar with this form of grief, you may be unsure how this is possible or what often triggers this form of grief in people. Often, this form of grief is caused by a loved one becoming someone that you no longer know or recognize.


• Mental Illness
• Drug or Substance Addiction
• Dementia or Alzheimer’s
• Brain Injury
• Family Trauma

The unfortunate truth of grieving someone alive is that they are still there as the person you once knew but psychologically are a different person than they were before. Also, many of these factors are outside of the control of the person experiencing them or the person who is watching their loved one suffer. It can be hard for either party to recognize because the person does not always look like they are sick.
Don’t look at these causes and think that they mean that you love this person any less though. This form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality. If your brother is suffering from a drug addiction, his behavior may become erratic and he might start stealing from yourself or other family members. Some will grieve the life that he is not living as he focuses living for his addiction. If someone is dealing with a mental illness, they may now be dealing with depression so badly that they are unable to go on living their life or they may be experiencing delusions or hallucinations.
A person will experience many emotions while grieving someone alive. These emotions may be more powerful and more confusing than the grieving process for someone who has recently passed. Anger is a prominent emotion that shows up. The grieving individual could feel anger towards their loved one for the issues they are dealing with and have a hard time understanding that they may not be able to change, such as in the case of mental illness. While experiencing anger, you may feel guilty as well that you are experiencing anger or guilty that you cannot control or change the situation.
Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant every time you think of this person or hear about them.

How to Grieve Someone Alive

• Let yourself grieve. Don’t attempt to hide or suppress your grief for this situation just because society or your loved ones don’t understand or acknowledge what you’re going through. Be open to sharing how your feeling to close family and friends and don’t push yourself to be someone you’re not at this time.
• Find other people in the same situation. Connecting with other people who are experiencing the same kind of personal loss as you is an invaluable resource. This can come in the form of a support group or finding an individual to speak with. Having someone understand what it is like to be grieving someone  alive will help to put your situation in perspective and help you to gain insight on the validity of your feelings.
• Don’t forget your memories or the past. When you are experiencing ambiguous or unconventional grief, it is easy to forget why and how you previously loved someone in the midst of their hurtful behavior. Remind yourself of the good times that you had and why you originally loved them. It is okay to cherish old moments and mourn that they are gone. Remember that that person is still here though, just not at the moment.
• Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.
• Always remember that the illness is not the person. For many people, this is the hardest mental hurdle to overcome while grieving someone alive. Stop yourself from thinking of your loved one as the disease they’re dealing with, whether it be addiction, Alzheimer’s, or depression. You will still likely feel angry towards the person but understanding what they’re actually dealing with can help you process some of those feeling.

Unconventional Grief, Ambiguous Grief, or grieving someone alive are all very real and pertinent forms of grief that need to be treated, understood and addressed. Become a member of The American Academy of Bereavement today to find more resources on grief.

via Unconventional Grief: Grieving someone Alive

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[BOOK] Epilepsy Across the Spectrum – NCBI Bookshelf

Cover of Epilepsy Across the Spectrum

Epilepsy Across the Spectrum

Promoting Health and Understanding

Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; Editors: Mary Jane England, Catharyn T Liverman, Andrea M Schultz, and Larisa M Strawbridge.

Washington (DC): National Academies Press (US); 2012.

ISBN-13: 978-0-309-25506-6


Throughout this report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condition that develops later in life or in response to an injury or other health condition. These many complexities of epilepsy make it a challenging health condition to convey to the general public to promote understanding and alleviate stigma. This report aims to provide evidence and impetus for actions that will improve the lives of people with epilepsy and their families.


via Epilepsy Across the Spectrum – NCBI Bookshelf

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[BLOG] Who Am I Now? Loss of Self after TBI – Brain Injury Blog With Free TBI Information

Loss of self is one of the biggest hurdles that TBI Survivors face

March, 2018

By Bill Herrin

When a loved one dies, friends and family bear the brunt of the loss. There are rituals for their grief and mourning. As they go on with their lives, they hope and often expect that the pain will fade with time. They are often told, “Give yourself time” or “Don’t make any major decisions now” and “It will get easier.” They are expected to feel sad, upset, and even angry after a death. But they are also expected to move on with their lives, no matter how difficult or painful it is.

Everything Has Changed

But when a person has a traumatic brain injury, their family faces new and different challenges. They have lost many of the things that they knew and loved about the Survivor. Their relationship with the Survivor has changed and so have their expectations and dreams for the future. While the physical, cognitive, behavioral, social and  even financial changes may be most evident, there’s something else that’s harder to define.  That’s the loss of self that the Survivor of a TBI faces. “Who am I now?” is the critical question. “What gives meaning to my life now?” Then there is the uncertainty of whether it’s even possible to reclaim your old life when so much has changed? While most everyone tries to overcome loss of self, some succeed…some cannot.

Necessity is the Mother of Reinvention

Hilary Zayed, who survived her brain injury, knows how difficult finding your new self can be. Her story is one of a huge transition described in her book, Reinventing Oneself After Loss.  Her artwork became a vehicle as she explored who she had become since her injury and how she rebuilt her identity, mourning her loss of self, and slowly regaining her new sense of self. Everyone will have different goals and different results. It’s not necessarily finding what makes you happy (though it helps), but more importantly, it’s finding what gives your life meaning now. This is the first step toward such a huge change. Finding a catalyst that drives you forward toward your reinvention can be incredibly motivating. Think about what makes you feel fulfilled, satisfied and meaningful and consider how that could become a part of your life after TBI.

There is no set timetable or deadlines for reinventing your self. Survivor Garry Prowe’s tips on Living a Full Life after Brain Injury, admits that the initial steps to finding your new life may sound obvious – dealing with a roller coaster of emotions, feeling overwhelmed, angry, and depressed along with financial stress, unemployment, social isolation, and life style changes. But the greatest stress may be the uncertainty of the future as the path and extent of recovery is unpredictable. However, the road to reinvention has to start somewhere. It can take months and even years until you feel ready to work on reinventing your sense of self. Once you’ve been able to self-assess your strengths and capabilities, you’ll have a much better idea of your new direction as you begin the process of rebuilding. Prowe’s tip card is an inexpensive resource ($1) that outlines the many steps of recovery with contacts/resources/ideas for you. (You can sign up to receive a free catalog and tip card from Lash & Associates – and choose his tip card “Living a Full Life after Brain Injury at this link).

Different Paths for Different People

As life goes on, be encouraged by the many who have been in your shoes and traveled your journey. Jeff Sebell, also a survivor,  worked on “getting his power back” after his brain injury by focusing on regaining his self confidence, re-learning how to make decisions, and taking action steps toward living the life he wanted. Sounds simple, right? Of course it’s not at all, but Jeff shares an incredibly insightful peek into his “Modus Operandi” in this blog post, and also in his book “Learning to Live with Yourself after Brain Injury.” Jeff’s take on having a better life is based on how you choose to interpret the things that happen on a daily basis. This can make the difference between having a good day or a bad one. Just using this as a starting point can move your life in a more positive direction! We don’t have control over what happens to us, but we can interpret and judge its impact on us – and try to see the big picture. Jeff reminds us that TBI, and loss of self, doesn’t have to leave you powerless. Rather you can regain control over your life by working on positivity and determination. The results will follow. Your loss of self will soon become transforming…you’ll find that you’ve discovered your “new normal.”

There are no set rules for this rediscovery. We all have very different paths after a brain injury. Some of these paths may criss-cross and you may share common experiences and feelings with other survivors. However, navigating through the maze of traumatic brain injury requires self-determination, finding your strengths, setting some incremental goals for your life, and making the commitment to start working toward them.

Lash and Associates’ award winning blog site (on our website) offers hundreds of absolutely free blog articles by TBI experts and clinicians, TBI survivors, and family members that share insights as well. A well-rounded offering of insights from every possible angle – including more on the subject of today’s bulletin – loss of self. Lash & Associates is also a leading publisher of books, cognitive software, and more – all for the brain injury community. Just click the two award icons, or CLICK HERE to see our entire blog article collection!

via Who Am I Now? Loss of Self after TBI – Brain Injury Blog With Free TBI Information

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