The things I need to know, to move forward

two rock climbers on climbing wall

So, the session with my neuropsych (NP) went well yesterday. We actually sat down and went through the data from my prior two evaluations, and I got to refresh my memory about what’s going on with me behind the scenes.

The things that jumped out, which are measurable problems are:

  • processing speed
  • visual memory problems
  • resistance to short-term interference

We talked a bit about these issues, and I got a clearer view of what actual difficulties I have. I struggle with certain things all the time, but I don’t always have a clear view of why that is. Maybe it’s my processing speed. I don’t seem to put things together right away, so I often don’t even realize that I’m struggling till later.

The idea that I’m slow doesn’t make me very happy. I’ve got “superior” intelligence, but my speed can be glacial at times. That puts me at a disadvantage in the speed-addicted world, where everything happens at high speed. It also doesn’t help me in social situations, where people gauge your intelligence by how quick you are. Obviously, that’s not a fair comparison. But that seems to be the public bias.

The thing that bothers me more is the visual memory thing. I tend to think of myself as a visual thinker, but maybe that’s not the case. My memory was the worst, when I was trying to remember pictures. I forgot things pretty quickly. Like they’d never even existed. Compared to my verbal memory (which also kind of trailed off at times — I lost track of important details), it was a lot worse.

I need to dig into this more, because I think this may be why I struggle with some things I really, really love. I’m an “anatomy geek”.  I love to study pictures of human anatomy — feet, hands, shoulders, backs, legs, torsos, internal organs, the nervous system, even the musculature of the head. But for some reason, no matter how hard I study, no matter how hard I try, I can’t seem to keep the images in my head. I tried to become a personal trainer, years ago, and the reading materials were fine. But I couldn’t get the anatomy piece.

Maybe that’s why. If that’s the case, I need to either stop getting all these atlases of the human body, thinking I’m going to memorize them all… or I need to find another way to study. I’m not willing to let go of my love of the human system, so I’m not going to give up my atlases. I just need to find a new way to memorize. And not just memorize, but really understand how things are put together, using all the tricks in my toolbox.

My first NP was pretty intent on making sure I didn’t get down on myself and think less of my abilities. I have a tendency to focus on the things I do wrong (I was raised that way, actually), and that can really drag me down.

Now I really need to work with my issues in a more focused way. I know the numbers I’m looking at are old — the last eval I had was about 5 years ago. I should really get a new eval, but it costs a lot of money, and my insurance won’t cover it. So, unless I come across an extra $5K that I don’t need for something else (and wouldn’t that be wonderful), I’ve got to work with what I have. Too bad. I’m stuck.

Then again, I’m not that stuck. I can still observe what’s going in my life, see what’s causing me problems, and deal with that. I have a lot going on, so it can be a bit of a “dust storm” with lots of competing information, and I may not always be able to make distinctions. But at least with the handful of issues that my NP eval has identified, it gives me a handhold.

All of this can be like standing in front of a rock wall, trying to figure out where to grab onto first, to start climbing. All I need is a few tips and hints.

Then I can get started.

Moving up.

Onward.

Upward.

Well, then, get some exercise. Move.

Bangkok traffic jam with cars and trucks and motorcycles all backed up below tram lines
Feeling a bit backed up, lately

I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.

I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.

I think I’ll read that book again. I think I read it years ago, and I need to read it again.

I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.

I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.

As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.

That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.

That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.

I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.

And so I will.

I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.

I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I  know I need to do. And just keep moving on.

The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.

Will the world step up and help me with my problems? Not if I don’t ask.

Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.

I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.

A new chapter is on the way, and I’m actually looking forward to what’s to come.

Turning a new page in the chapters of my life… again

open book with a landscape scene in the pages
This picture looks a lot more pleasant than my situation feels…

I’ve shifted direction in my TBI recovery, yet again. I’ve had to do some soul-searching, over the past year, as I’ve adjusted to the change in neuropsychologists — and my insurance company said they wouldn’t cover the support I need on a weekly basis. My official diagnosis, for insurance billing purposes is “Generalized Anxiety Disorder”. Ha – if only they knew. Actually, my anxiety is very specific. It’s comprehensive and exhaustive in detail. Calling it “generalized” isn’t exactly accurate.

Basically, some doctor who’s contracted to review their cases said he can’t see any reason why I continue to  need professional support from a neuropsych, and I should seek out “community support” instead.

So, I guess I’m supposed to attend support groups held by the local BIA or something like that. Or make more friends. Maybe call a support hotline. Dunno.

That’s all very well and good, and in a perfect world scripted by Hollywood, that would work. The thing is, I’m the sole caregiver for an increasingly challenged spouse, who has trouble walking, and is getting more emotionally volatile, impulsive, and forgetful by the month. I’m the sole breadwinner for our household, and my responsibilities include $upporting a weekly national broadcast that’s run on over 100 markets nationwide. I have a mortgage. I have a full-time job. I have a lot of people depending on me, but my ability to reach out for help is constrained by A) my reluctance to disclose my TBI history to anyone, and B) my spouse’s professional reputation, which is very much at stake.

If I disclose my TBI and the full range of my challenges (which extend past the brain injury stuff) and get 100% accurate about what I need and why, I will automatically enter the ranks of the “disabled”, according to the official definition.

And I can’t have that. No way. No how.

This is not a slam against disabled people. It is a slam against our society which stigmatizes and relegates the disabled to second-class citizens and makes it next to impossible to live a full life with a designation of “disabled”.

I cannot live my life in a “disabled” social/economic bracket. I just can’t. And as long as I can keep up the appearance of performing at “normal” levels, I’m going to do exactly that. Regardless.

If I turn to the community for help — leaning on friends and acquaintances and my social circle — my spouse will pay the price. Because they are keeping up appearances, too, and much of what they do with others hinges on others’ perception of them as a 100% capable individual. The mobility issues are obvious to everyone, but their cognitive-behavioral challenges only appear behind closed doors. I can’t go around telling the world about what really happens, because that would seriously hose their reputation and ability to participate and be accepted in the circles they work in.

So, there’s my conundrum. And there’s the reason I could really use a neuropsych who understands not only TBI, but other neurologically based cognitive-behavioral issues.

I have a couple of choices:

  1. I can find another neuropsych (“NP”) who can work with me, who is smarter about billing with the right codes, not to mention helping me rise above my current situation. I need to do this, anyway, because the current NP is very focused on just averting disaster — calling attention to the problems I have, rather than my strengths. I’ve developed a bit of a complex, working with them. My old NP was very focused on growth and development and living large, even in the face of TBI. This one… not so much.
  2. I can go it alone. I’ve done that before, and an awful lot of TBI survivors do just that. I’ve got access to a lot of great NP books — some on my bookshelf, some in the library — so I can study up on it, myself. I’ve pretty much rehabilitated myself, anyway, in many respects. My old NP told me so. I’ve sometimes wondered why the heck I have to work with an NP, anyway. I’m not nearly as bad-off as many. I’m more functional than even those who haven’t gotten hit on the head a bunch of times. Why not just handle this myself?

Here’s the thing — I really am focused on growth and development, and I’m also very focused on a neuropsychological approach. And it’s important to me to have access to a highly trained professional who can offer their expertise and insights to my situation. I’m not like a lot of TBI survivors who don’t have an academic interest in this stuff. I’m very different. And my results have been atypical for TBI recovery.

My old NP told me so. In 40 years of rehab work, they’d never seen anything like it.

So, anyway, I got a bunch of names to contact about getting another NP evaluation, as well as working with my situation to improve and take things to the next level. I got the info a week ago, but I took a bunch of days off, just to relax and let myself catch up with things. Now I’ve had my break, so it’s time to start calling around. I’ll do that this morning.

If I find someone, great. If I don’t, I’ll take matters into my own hands. Even if I do find someone, I’ll still do that. It’s all a work in progress. The next chapter… as the page turns.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Getting the right information about #concussion

train tracks rounding a bend and disappearing
Who can say what lies ahead?

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Watch this space.

For this news … and more.

10 Things I Wish Someone Told Me After My Concussion(s)

Top 10 Things I Wish They'd Told Me After My Concussion(s)
Top 10 Things I Wish They’d Told Me After My Concussion(s)
Price: $2.99
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.

Emotional Problems After Traumatic Brain Injury – Peer and other support

Meeting Of Support Group
After brain injury, you need support

Peer and other support

Remember, too, that not all help comes from professionals! You may benefit from:

  • A brain injury support group — some are specialized for the person with TBI, others are for family members, and others are open to everyone affected by brain injury.
BB: Not everyone has access to this. But if you're reading this, you have access to the Internet, and there are support groups online, like the forum Traumatic Brain Injury and Post Concussion Syndrome
  • Peer mentoring, in which a person who has coped with brain injury for a long time gives support and suggestions to someone who is struggling with similar problems.
BB: Again, it can be difficult to find someone who can help you. But if you reach out online, you may find someone. Also, you never know who's had a TBI. We're everywhere.
  • Check with your local Brain Injury Association chapter to find out more about these resources. Go to http://www.biausa.org/ to find brain injury resources near you.
BB: I got some great info from my local BIA chapter. I attended some support group meetings. But I wasn't "impaired enough" for some people there, so I quit going. I guess I've gotten too good at hiding my difficulties.
  • Talk to a friend, family member, member of the clergy or someone else who is a good listener.
BB: They definitely need to be a good listener - and able to deal with you. Family and friends may not be able to help, because they may be too invested in you being like you always were before. It's a tricky line to walk, but it's important to reach out for help.

Read more at: Emotional Problems After Traumatic Brain Injury

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Emotional/Behavioural Changes after Brain Injury – Part 2

head with brain opening and question marks coming out

Continued from Part 1

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Impulsivity and disinhibition

A person may lose their ability to control their actions or their speech. This problem often goes hand in hand with lack of awareness, and the person may not be aware of breaking any social rules or etiquette. There are strategies that can help to improve the situation, and prevent a person from developing unacceptable behaviours through habit.

BB: The first thing that we need to know, as we recover, is that we're breaking social rules. We may not be aware. And while the people around us may not be comfortable "calling us out" on our behavior, it's important to do it. And it's important to persevere in convincing us that our behavior is just not good. Because we may literally not know. We may also resist accepting that fact. But brain injury and "bad manners" often go together - and if you  never realize you're behaving badly in the first place, it's impossible to fix it.

Emotional Lability

This describes a person’s tendency to laugh and cry very easily and to move from one emotional state to another very quickly. Loss of control over emotions means the person may express their feelings inappropriately or at the wrong time. This can be very tiring and embarrassing for family members to deal with, but in time a person can begin to re-learn emotional control.

BB: I am not a fan of emotional lability. Nor is anyone around me. It can be embarrassing and stressful, and it can make things worse. The best thing to do, for me, is find some humor in it. Over time, this can sort itself out and become more manageable. In the meantime, you just have to make the best of it -- and remember to not over-react to every emotional storm that comes along.

Self-centredness

Someone may become self-centred. For example, the person may not show any interest in family matters and only be concerned with their own needs. Brain injury can affect a person’s ability to judge how someone else is feeling. The person may also become used to the huge amount of attention they receive while in hospital.

BB: Recovering from brain injury requires you to become self-centered, in my opinion. You have to pay attention to yourself in new ways. You have to get familiar with yourself again. But it's easy to get too caught up in yourself, and that can distance others. Ultimately, the thing that's saved me, time and again, is getting past myself. Learning now to be less self-centered. It helps me with depression, it helps relieve my sense of being disconnected from others. Putting others first... that's been a big benefit for me.

Apathy and poor motivation

Lack of motivation, or apathy, is a direct result of injury to the part of the brain that controls emotion, motivation and forward planning. Over time, lack of motivation can lead to social isolation and lack of pleasure. For example, a person may show no interest in hobbies enjoyed previously, or they may not get out of a chair all day. To help, activities can be broken down into small steps to avoid overwhelming the person.

BB: This is a big one for me. Most of the time, I just don't care about much of anything at all. Seriously, I don't. And so many things I've started... well, they've just fallen apart and went nowhere, which made me feel like a total loser who wasted everyone's time. My motivation generally sucks. I wish it didn't, but then again... a lot of times, I just don't care, one way or the other.

But yet, I need to keep moving. I need to stay productive. I need to keep myself from falling into "disrepair" and ending up feeling worse than I already do. Life has always been painful for me. It hasn't been a long exercise in glee and joyfulness. It's been awkward and uncomfortable, and I've been in multiple kinds of pain for as long as I can remember. 

But something in me needs to keep moving. I find motivation where I can get it - generally not from the things that other people get motivation from. Just staying alive. Feeling like I'm doing something productive with myself. And constantly coming around again to take another shot at what I want to do.

Motivation is a tough one for me. I guess I've just developed habits around getting stuff done, and they work for me when I have no motivation to do anything, at all.

One thing that keeps me motivated, is doing things for others. Serving others. Being available to others to help, so they can have the best life possible. That motivates me, I guess. It's probably my biggest one. The rest of the things -- money, success, fame -- nah, I'd rather do something useful that benefits others, to be honest.

Depression

Depression is a very common emotional reaction experienced in the later stages of rehabilitation—often when a person realizes the full extent of the problems caused by the accident. This can be seen as a good sign: the person is aware of the reality of the situation and is coming to terms with the emotional consequences. “Healthy” depression can be worked through in time, as adjustments are made. If a person feels emotionally blocked and unable to move on, professional counseling from someone who understands head injury may be helpful.

BB: I never gave much thought to this before, probably because I've always been depressed, and it's nothing new for me. When I was in high school (I had a handful of mild TBIs in the course of three years), I went through a period that was utterly, completely black. Literally. I couldn't see anything, at some points. Everything was dark for a little bit, and my vision wasn't working.  Fortunately, it seemed to happen when I was sitting down. But the emotional darkness was the worst. I just felt like I didn't even exist, and I didn't care, one way or the other. 

I'm not sure that it had anything to do with realizing how messed up I was. I didn't realize those blows to the head had any effect on me at all. I just felt awful. Whether it was the mTBIs or just being a teenager, is anybody's guess.

Someone asked me once, if I had a history of depression. I said, "Of course," and they seemed sad. I didn't mean to make them sad -- just tell the truth.

Anxiety

It is natural for people who have had a traumatic experience to feel anxious afterwards. Individuals may experience a loss of confidence when they are faced with situations and tasks that are difficult to cope with. However, problems can occur if difficult situations are continually avoided, or if those caring for them encourage dependence rather than independence. Talking about fears and worries is very helpful. Learning ways to stay calm under stress can also reduce the effect of anxiety on everyday life.

BB: I know this one all too well. And what most people don't realize, is that anxiety isn't just about the injury itself. If anything, the injury is just a small part of the total anxiety-generating stuff. Insecurity and instability builds throughout the course of your recovery (because some recovery is invariably happening, even if it doesn't seem like it), as you walk into different situations that you feel should be OK, but then you screw things up -- many times without even realizing it -- and it happens over and over again. Everyone around you is afraid to say anything, because you might A) blow up, B) cry, C) fight them on it, D) feel terrible. Everybody's walking on eggshells, so you never get the information you need to recover sufficiently, or adjust your behavior and adapt to situations.

So, people just basically leave you to your own devices, which is a terrible idea, because it leaves you alone with the very thing that's causing you problems -- your brain. And the anxiety builds over and over and over, because you can't get the help you need to adjust and recover -- and regain your dignity.

Small wonder, that we start to avoid situations. Sometimes it's just easier to not even bother, than get dragged across the hot coals of embarrassment all over again.

Inflexibility and obsessionality

Examples of this behaviour include: unreasonable stubbornness; an obsessive pattern of behaviour such as washing or checking things; or fear of possessions being stolen. The person can lose the ability to jump from one idea to another, and becomes “stuck” on one particular thought. This type of behaviour is often made worse by anxiety or insecurity, so it is helpful to reassure the person and and redirect their attention to more constructive ideas and behaviour.

BB: You never know if the stubbornness is unreasonable or not. There may be a very good reason for it - but nobody's asking the right questions, so you end up looking "unreasonable" to people who might be able to help you, if they just took a different route or opened their minds.

Getting stuck on an idea or a frustration is a big problem for me, to this day. If I'm tired, I can get "stuck in a loop" where I'll keep arguing about the same point, over and over and over again, making everyone around me absolutely nuts with frustration. And they don't know how to get me out of it. 

It's impossible to argue with me at those points. Best thing to do, like they said, is redirect my attention in another more productive direction.

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Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Emotional Problems After Traumatic Brain Injury – Temper outbursts and irritability

aggressionFrom MSKTC

Temper outbursts and irritability

Family members of individuals with TBI often describe the injured person as having a “short fuse,” “flying off the handle” easily, being irritable or having a quick temper. Studies show that up to 71% of people with TBI are frequently irritable. The injured person may yell, use bad language, throw objects, slam fists into things, slam doors, or threaten or hurt family members or others.

What causes this problem?

Temper outbursts after TBI are likely caused by several factors, including:

  • Injury to the parts of the brain that control emotional expression.
  • Frustration and dissatisfaction with the changes in life brought on by the injury, such as loss of one’s job and independence.
  • Feeling isolated, depressed or misunderstood.
  • Difficulty concentrating, remembering, expressing oneself or following conversations, all of which can lead to frustration.
  • Tiring easily
  • Pain

What can be done about temper problems?

  • Reducing stress and decreasing irritating situations can remove some of the triggers for temper outbursts and irritability.
  • People with brain injury can learn some basic anger management skills such as self-calming strategies, relaxation and better communication methods. A psychologist or other mental health professional familiar with TBI can help.
  • Certain medications can be prescribed to help control temper outbursts.

Family members can help by changing the way they react to the temper outbursts:

  • Understand that being irritable and getting angry easily is due to the brain injury. Try not to take it personally.
  • Do not try to argue with the injured person during an outburst. Instead, let him or her cool down for a few minutes first.
  • Do not try to calm the person down by giving in to his or her demands.
  • Set some rules for communication. Let the injured person know that it is not acceptable to yell at, threaten or hurt others. Refuse to talk to the injured person when he or she is yelling or throwing a temper tantrum.
  • After the outburst is over, talk about what might have led to the outburst. Encourage the injured person to discuss the problem in a calm way. Suggest other outlets, such as leaving the room and taking a walk (after letting others know when he/she will return) when the person feels anger coming on.

Read the rest of this article at: Emotional Problems After Traumatic Brain Injury