Beautiful day today

Uppsala, Sweden – I’ve never been there, but it’s a nice picture

And I got my exercise this morning, to move things around a bit in my cells and wake them up. It’s been a few days since I really exercised, and it feels good to do it. I’m tired, I’m behind on my sleep, and I have a big afternoon ahead of me, but at least I got my exercise in. That’s something.

I’m going to have to watch my energy again today — I need to make sure I do not get too overwhelmed. I’m going to a big picnic with some folks I work with, and I’m feeling a bit of anxiety and pressure over it. I usually just work-work-work with these folks, but today we’re going to relax and play. Who knows? It might actually turn out well.

But I’m concerned that I might get worn out by the experience and end up melting down tonight and taking it out on my spouse — which is what sometimes happens when I am socially active and expend a lot of social energy.

So, I’ll just have to pay attention. And if I get too tired and too turned around, I’ll just step away for a moment, breathe, and head back to the party when I feel better. I also don’t have to stay forever — we have some other plans for later this evening, so I have an “out”.

The main thing is to just enjoy the day. It doesn’t have to be a huge deal. I can just relax and enjoy myself. Who knows, I might even have fun…

The thing to remember is that I do have backup plans. I have coping strategies and tactics I can use. Breathing is a big part of it. Just breathing steadily and staying aware of what goes on around me. And not filling my head with all sorts of messages about not being able to handle social situations… not being able to make it through a day of activity without losing it.

I know my spouse is a little concerned, but I can’t let their concern stop me from trying again. They have social anxiety that’s even more pronounced than mine at times. Between the two of us… but today I need to focus on the positives, be grateful for this amazing weather, and just relax… and enjoy.

Just understanding makes things better

So, I’ve been reading up on the Polyvagal Theory, and it’s really making a lot of sense to me. In a nutshell (if I dare to summarize), the human system has three systems which respond to the environment, especially perceived threat:

  • The primal vagus – which is responsible for the freeze response like turtles have — shutting down the system in the face of inescapable threat. This kind of freeze slows the heart rate and reduces oxygen to the body — it’s basically getting ready to die, and making sure you don’t feel the pain when you go. This is not a system we can really control.
  • The sympathetic nervous system – which is responsible for kicking in the fight-flight response. It also kicks in a different sort of freeze response than the primal vagus — the sympathetic freeze response is where you tense up, like a deer in headlights. This freeze is completely different from primal vagal freeze, because your system does the opposite and increases breathing and heart rate. This system responds to our thoughts and reactions and interpretations of our environment, so we can sort of control it to some degree.
  • The “directing” vagus – which regulates the other two systems and also makes it possible for you to consciously slow your heart rate or breathing, and regulate your system intentionally. The nerve endings are very closely located to the muscles of the face and neck, and we “cue” off the facial expressions that are produced from messages the social vagus detects in our system (like fear or anger or happiness) to regulate our own social behavior, as well as our reactions to our environment.

The directing vagus (as I call it) is the most recently developed system, next is the sympathetic nervous system, and the primal vagus is the oldest and least controllable of the three. The cool thing about this three-fold system, is that they all interplay with each other, and the more developed systems can override the more primal ones.

If the sympathetic nervous system couldn’t override the primal vagus, there would be a lot less people in the world, because the human system can’t handle extended periods of shutting off oxygen and blood flow (like reptiles can). Our lives would be much shorter, if we didn’t have the SNS fight-flight to kick in and take over in times of extreme danger/distress.

But at the same time, staying stuck in fight-flight 24/7 is no good, so we have the directing vagus that helps us consciously regulate our systems and power down the fight-flight when we no longer need it. The directing vagus is closely connected with interpersonal interactions and reasoning. It not only delivers messages from the body to the brain, but it also helps the brain regulate the body. Problems arise, like PTSD and other mental health issues like panic/anxiety, when we get stuck in that fight-flight loop and can’t get out.

So, how to get out…? I must admit, I’ve been reading a whole lot, so some points may not be totally clear for me yet, but the way I understand it is this: When you’re really stressed, physiologically and neurologically, you are not capable of thinking clearly, and your problem-solving abilities really suffer. But when your system is balanced and rested and responding well to the world, it’s possible for you to “recruit” the full range of your problem-solving abilities and approach your life as a learning experience, not a continuously pitched battle. Now, stress is inevitable in today’s world, but through the directing vagus, you can override the instinct to fight-flight and call on other abilities to deal with your environment that don’t involve still more battle.

And how do we activate the directing vagus? Well, we can do it socially, through talking and sharing meals (talking and eating activate systems in your body that are close to the directing vagus fibers, so the vagus is stimulated as well). We can also do it consciously on our own, through certain types of breathing, movement, mindfulness, and other activities. (The directing vagus both “listens” to the body and gives it instructions, so mindfulness is sort of like exercise for your vagal pathways.) We can also do it semi-consciously by changing our attitude and re-intepreting our experiences to be less combative. By changing our minds about things, we can literally retrain our systems to get out of fight-flight mode, relax, and come up with different approaches to our situation in life.

And that’s important. Because the three systems work in a loop. If the more developed directing vagus system can’t cope with what’s in front of it, the body activates the sympathetic nervous system to spring into fight-flight. And if the SNS isn’t working out, then the primal vagus kicks in to start shutting down the system (preparing to die). It’s an automatic and sometimes uncontrollable chain reaction, and it’s set off when the hierarchical systems fail in the order of sophistication. It’s like the body is looking for the first, best answer to the situation — if the complex thought processes of the directing vagus can’t solve the problem, then fight-flight kicks in, and if that fails, then the primal system takes over and rational thought and conscious choice become that much more elusive. The body keeps looking for answers, and if it can’t find something that will let it respond to a perceived threat, then it just goes into “kill me now and get it over with” mode.

And that’s a pretty rough place to be.

So, what will keep that cascade of diminishing options from kicking off? Well, to me it seems that information and understanding — both about the environment and your internal resources — will go a long way to helping. If you understand in your mind what’s really going on with you (for example, that your brain is acting up because you didn’t get enough sleep last night), and you can reason your way through to a solution (going easy on yourself and taking a nap later in the day), then there’s less reason for the fight-flight response to kick in, and you still have a bunch of cognitive resources available to you. You’re still able to access all your circuits, and that frees you up to make well-informed choices.

Even if you do go into fight-flight mode, and your “unnecessary” neural processes start to shut down because of the stress response, you can take a step back, take a deep breath (or two or three or 20), and re-think things. You can consciously slow yourself down and get yourself back to a more balanced state by using the directing vagus to chill. And that frees up more of your circuits to come up with better ideas and a plan for getting out of the jam you’re in.

Just understanding what’s going on around you — and inside you — can make all the difference in how you approach your challenges. This is why I believe so strongly that TBI/concussion survivors and their loved ones should be educated as much as possible about the brain and how it reacts to traumatic brain injury. Just knowing that you’re not crazy, that this upheaval is a natural response to the injury, and that things will change over time, can help dispel a whole lot of anguish.

I know it did for me.

On top of having information about TBI/concussion, it’s also critical to have knowledge of yourself, to know for a fact that you are capable of handling the things that come up in life, and to be confident that, no matter what happens, you’ll be able to figure things out. Confidence of that kind can be hard to come by in the aftermath of TBI, but cultivating that is so very important. It’s also contagious — your confidence tends to carry over to others, thanks at least in part to the directing vagus, which communicates with the rest of the world via facial muscles and the interpretation of clues and cues coming from others’ faces.

Bottom line is, knowledge is powerful, and in approaching the trauma of TBI and/or concussion and managing the symptoms and after-effects, you can’t put a price on knowledge and understanding. Having more information makes it possible for us to turn to reason — having less information forces us to resort to fight-flight tactics, which just adds to our stress (and that’s probably connected with why experiences with doctors/medical experts can be so traumatic for so many – they just don’t give us much to work with).

Understanding is hugely important on many different levels. You can’t put a price on it.

And with that, I’m off to work, operating with the understanding that I didn’t get nearly enough sleep last night, and that I need to pace myself and also look for an opportunity to catch a quick nap later this afternoon.

Onward…

 

The Perceive, Recall, Plan, Perform (PRPP) System of task analysis

This post is a placeholder for a discussion on this topic.

I just found it, and it could be useful. I think it’s similar to other approaches I’ve taken, but I could use a refresher with my general approach to my daily life — especially the challenging situations.

DESCRIPTION

The Perceive: Recall: Plan and Perform System (PRPP) is a process-oriented, criterion referenced assessment that employs task analysis methods to determine problems with cognitive information processing component function during routine, task or subtask performance. The PRPP System is for use with adults and children who have difficulty performing daily or episodic tasks. It is suitable for adults and children of either sex and from any cultural background.

It sounds formal and complicated and it sounds like it’s used in a therapeutic situation, but it may come in handy for me in my daily life. So, I’m not counting it out.

Off to a better start (today)

After the flood

Well, I got another lesson yesterday. I’ve been really struggling with my sleep and my workload, and yesterday I thought I’d try to pack in as much as I could — and it totally backfired. I ended up really frying my system and getting into a protracted argument with my spouse that really took it out of me. By the end of the day, I was sick and more tired than ever, and feeling like crap.

I felt terrible about myself, about my behavior, about my inability to just buckle down and get things done, and about the dynamics at work which have been pretty intense. I was sick to my stomach and sick at heart, and just feeling completely depleted and defeated.

One thing I noticed, however, was something that actually helped me feel better about myself. See, I’ve noticed in the past that after relatively minor “infractions” — a heated argument, or a stressful period of time — my mood spirals and plummets, and I end up feeling disproportionately terrible about myself. In many cases, the arguments or the difficulties I had were not catastrophic, and in fact others who were involved did not end up hating themselves or feeling like trash. But I ended up feeling really, really terrible about what went down, and no matter how I tried to rationally talk myself out of feeling like the world was going to end, nothing seemed to help.

Rational thought was a lost cause. I felt like shit, and that was that. Nothing helped by sleep and keeping chilled out for the next few days.

A few years ago, when I was having some intense episodes of panic and meltdown, followed by terrible feelings of worthlessness and despair, I realized that the times when I felt the worst about myself were when I felt the worst, physically. I know people (including my neuropsych) who believe that our physical well-being follows on what we think about ourselves and our environment, and how we interpret them. That is certainly true to some extent… additionally, I have found that when I feel bad physically, then my mood plummets, and no amount of good sense will turn me around, until I am physically well and balanced again.

It’s like, when I get into these tight situations where I am “pinned down” and feel like I cannot escape, I cannot master the situation, and I am sliding down that ragged slope into a meltdown, my whole body goes haywire, and it fires off all these charges that fill my system with bursts of adrenaline, stress hormones, and whatever else floods my system when I’m feeling cornered. It’s a primal physiological experience, and it completely takes over and shuts down my abilities to deal effectively with whatever is in front of me. I simply cannot recruit the whole of my coping abilities… and in situations of tension where people around me are already on the verge of panic and leaning on me to mirror their own concerns (because not acting as panicked as they are makes them nervous and uncertain), I feel intensely trapped, cornered, and persecuted. But the only way out is through, so I have to deal with them.

But dealing with them in times of intense stress (when my fight-flight response is trying like crazy to override my freeze reaction) the result is some pretty intense battle skirmishes which leave me feeling completely wiped out and destroyed.

It’s not even true that I AM destroyed — I just feel that way. And even if things turn out okay and everything resolves to everyone’s satisfaction in the end, I am left with a backlog of biochemical sludge, just like when a river floods and then recedes, and I’m left with all the sludge-covered bicycles and deflated basketballs and shopping carts and trash that got thrown in the river over the years.

That’s literally what it feels like, and it’s figuratively how it is. Because when I get to that breaking point, I am not dealing only with the present moment. Oh no. I am dealing with all the other moments and hours and days and years behind me when I felt pinned down and couldn’t get myself out of danger… when I was put on the spot by people who meant me ill or well, and I couldn’t come up with anything useful or good to do or say in the moment… and then the memories after the fact of people being so hard on me for things I got wrong or didn’t do or say the way they wanted me to.

When I’m cornered, I’m not just cornered at that moment. I am cornered through all the moments of my prior life — and all my imagined moments in the future.

And I flood. Like that Hungarian town where the container of toxic sludge broke open and doused the town in ochre red poison. That would be me.

And I feel terrible. Physically awful. Like shit.

And then I start to get down on myself. I feel awful mentally and emotionally.

The thing is, the mental and emotional anguish comes after the physical problems. The physical things come up as a result of my mental perception, but the after-effects, which are the most debilitating for days on end, follow the physical effects.

So, it’s not all about my state of mind and emotions that dictates this. It’s also my state of physical being that matters.

And this is key. Because in knowing this, I can take concrete, definite steps to address how I’m feeling mentally and physically. Rather than staying down in that low state, with my hands shaking, my stomach in knots, my thinking foggy, and my voice halting and slurred, I can simply go to bed. That’s what I did last night, after all the BS was over and done with. I went to bed. And I slept. And when I got up this morning, still feeling dull and foggy and sick, I got my exercise in. I didn’t just lie in bed and look out the window. I got on the exercise bike, did my leg lifts, and I lifted my weights, after being away from that for several days.

It’s critically important that I keep up with my exercise. If I don’t, and if I don’t keep to some sort of schedule, then I go off the rails, and I end up feeling physically bad — which in turn results in me feeling mentally and emotionally fragile. Like glass. It seems ridiculous to think about, but that’s how I feel — like glass. And over what? A misunderstanding that escalated quickly out of control.

But there’s more to it — it’s not just what/how I think about things. It’s how I physically experience them. If I am pushed to the brink, I react physically. We all do. And with me, I react probably more extremely than most normal people do. I escalate very quickly — and it’s not just about my thinking process. It’s about my physical reaction to things, which I really believe is tied in with my underlying autonomic nervous system reactions that have evolved over decades of stress and strain. As a result of so much that has happened to me, as well as systemic issues that come from my TBIs, I’m wound more tightly than I’d like, and I’m on a hair-trigger — all for a ton of different reasons that all add up to a potential explosion, over the seemingly most minor of things.

I’m not saying all this because I’m trying to excuse my behavior and get myself off the hook. I’m saying all this because it’s critical for me to understand, so I can manage it all. This is not a situation I care to be in. I am capable of better, and I know it. The thing is, I can’t manage a situation, if I don’t understand the underlying issues, and I can’t understand if I don’t identify what’s going on.

I’m sure I’ve written about this stuff in the past. I just can’t remember right now. My thinking is still foggy and a bit clunky. The thing is, I’ve at least started out on a better foot than I did yesterday or the day before. I got up at a decent hour. I got my exercise. And I had my breakfast and vitamins. I didn’t overdo it and I didn’t underdo it. I just did it. I also realize that my feelings of depression and despair are physically based, and I know they will pass as I continue to do healthy things over the coming days. It helps to know this, even if I feel like sh*t right now. And despite feeling like a once-flooded Eastern European village, that’s starting to make a difference.

The other thing that’s making a difference, is my increasing understanding with the Polyvagal Theory, which explains so much that I’ve had hunches about before, and confirms my suspicions from personal experience. In many cases — more than some guess, I believe — our bodies set the stage for our mental and emotional reactions and well-being. It’s nice to think that a “top-down” approach of mind-over-matter can control our destiny, however there’s a ton of bottom-up information our systems are constantly dealing with, that affects how we react, how we think, how we live.

So, it’s time to give the body its due. It’s time to recognize the physical components of experience — the felt experiences that affect our thinking and state of heart. And it’s time to take positive, constructive action that makes the most of this recognition. That’s my goal for today, anyway.

Now, off to work…

What happens in vagus never stays in vagus

In my pretty much relentless pursuit of what will relieve some of the stress and strain of the effects of multiple concussions/TBIs, I’ve been told a lot of things, and I’ve also read a lot of things. I’ve also been routinely “diagnosed” by strangers and friends alike (none of whom have been willing to factor TBI into my equation), as one or more of the following:

  • mildly autistic (Asperger’s syndrome)
  • heavy-duty trauma survivor
  • depressed
  • manic
  • obsessive-compulsive
  • ADD/ADHD
  • “Peter Pan” syndrome (unwilling to grow up)
  • arrested development (unable to grow up)
  • tortured genius
  • artiste
  • etc.

The eagerness of others to diagnose me, sometimes on the spot, is a little irksome, I must say. But now that I’m reading up on the Polyvagal Theory (which explains how the autonomic nervous system is actually comprised of more than one vagus nerve, and is much more varied than many have thought/learned), I’m seeing some common threads between these perceptions.

Stephen Porges, who has been refining the Polyvagal Theory since the mid 1990′s, proposes that there are two distinct branches of the vagus nerve

  • one which is primordial and closely related to how prehistoric tortoises react to threats (e.g. freezing), and
  • one which is more recently evolved, which has the ability to override the sympathetic (fight-flight) response and regulate our internal systems in more subtle and immediate ways

Both of these systems interact with the fight-flight sympathetic nervous system reponse, and when the whole is “out of whack”, you end up with things like neuroses… and/or the inability to control your autonomic nervous system. Porges has proposed that much mental illness can actually be traced back to difficulties with autonomic self-regulation. When you’re unable to get out of perpetual fight-flight mode, and your system is fried from way too much sympathetic stress or way too little “tone”, you can end up with real problems — both in your head and in your life in general.

So, being able to control your inner state is essential to good health — both physical and mental. The beauty of the Polyvagal Theory is that it identifies some core characteristics of issues that are usually considered separate and different from one another, and it provides a way to approach those underlying core issues that is common-sense and also highly practical. What’s more, a lot that you can do to help your vagal tone is actually free and you can do it yourself. Not to say that serious issues can be fixed with a “home remedy” of mindfulness meditation, intentional breathing, and self-talk… but a little of that, done on a regular basis, can go a long way.

At least, that’s how I understand it. And frankly, I have the distinct impression that doing so could dramatically improve the quality of life for a whole lot of folks who suffer with serious self-regulation issues.

And in more ways than one. Because the vagus nerve (the “wanderer” nerve) is the longest nerve in the body, and it reaches into all our viscera — our heart, lungs, digestive system… the whole works. And it both carries information back to the brain and sends information to the organs, so that it’s this constant feedback system that both tells us where we’re at and how we’re doing, and also lets us direct our internal systems, through our thought process, our self-talk, our attitudes, the meanings we ascribe to things, our gut reactions — all of it — in one continuous full circuit.

When the circuit is communicating well and has useful and constructive direction to give to our organs, then we get health. When the circuit is whacked with too much stress and strain, then we get… something else. It’s oversimplified, I know, but the bottom line is, what happens to the vagus happens to our whole body — and it also happens to the rest of the world around us, as it influences how we experience and react to life around us.

Seriously, the vagus is one bad-ass nerve. It’s my favorite nerve, in fact, just after the trigeminal, which is actually interrelated with the vagus.

Anyway, I’m just starting to learn more about this, and I have a long way to go. But it is very interesting, and I intend to learn — and use — more.

What gets lost – and what is found

The other day I got a surprise. My mother has been going through old pictures and early childhood notes she kept, and she’s been sending them around to all the kids. Mine came in the mail — I wasn’t expecting it at all — and what a surprise… and a mixed one at that. It was also revealing, in what was said and what was not said.

When I was very young, my mother paid a lot of attention to me and my development. I was ahead of my peers in terms of development and speaking, as well as energy and activity. My mother has often said that she was a little dismayed when I was very young, because I was up and around and walking and talking well ahead of the others my age, and while other infants were just lying there and looking around (if that), I was up and around, talking and interacting.

There are a number of notes about things I said when I was 2, and my activity level, and the friends I made early on. Apparently I was a gregarious, outgoing kid who loved to talk and explore and stir things up. Then the notes slowed to a trickle and at the end of the notebook, there’s a fair amount of reports of me being disciplined, complaining about being punished, complaining about my parents giving me a hard time, and generally getting in trouble.

I’m not exactly sure what precipitated the change… I had another sibling born 2 years after me, which could explain why the notes slowed, aside from reports of having trouble with me. I also am pretty sure that I got hurt when I was in child care when I was around 3-4 years old — I fell and there was a lot of commotion, and then people watched me very carefully. I may have gotten hurt even earlier than that, because I was in the care of a woman who had a young son who was “special” and big for his age, and who (so I’m told) loved to play with me. Who knows if he played a little too rough and I got knocked around a bit?  I had a fall down some stairs when I was 7 years old, and when I was 8 I got hit on the head with a rock, and even as a kid, I noticed a dramatic (and uncontrollable) change in my behavior.

And it didn’t stop there. I kept having accidents and mild TBIs throughout my childhood, each one taking a slightly different toll, each one making my life (and the lives of others around me) that much more complex and confusing. I went from being a lively, gregarious, happy kid to being withdrawn, angry, sullen, temperamental, and violent. Some change. Who I was by the time I was 11 was completely different than when I was 2.

After I looked through the notes last night, I went from being excited and intrigued and entertained, to being a little dismayed… then a lot dismayed. I had started out so well, had so much going for me. I was ahead of the curve, I was making great progress. Then what happened? It really upset me, and I felt a keen and painful sense of loss, wondering what might have been, had I been able to stay that lively, gregarious, outgoing kid through the years.

The more I thought about it, the more crushing it felt. I had been such a bright light, at the start. And it didn’t last. I went from being a real source of joy and wonder, to being a source of pain, frustration, embarrassment, and anger. And it didn’t stop for decades. When I think of everything my parents and friends and teachers went through… What a difference. What a loss.

Eventually the tears came. Bitter, bitter tears. Anguish. And no escape from it. That was my past — the hope of my first few years dashed like so much pottery thrown from a cupboard during an earthquake. Broken, shattered, some of it impossible to retrieve or repair. The past was the past… and the thing that made it all the more bitter was that I had not started out in bad shape — I had started out ahead of the curve, with some great advantages. But they were lost, soon enough. Too soon.

But such is life. And with TBI (and so many other kinds of injuries) so it goes. Things are lost. Things are shattered. And some of them can never be put back together. They’re gone, and in some ways it seems like it would be easier, if they’d never even existed, so you don’t have a memory of how things once were… and dreams of how things might have been.

In some ways, it seems like it would be better, if there were no memory of how things once were — if my injuries had resulted in amnesia about how things were once upon a time, so I didn’t know what I was missing.

But I do know what I was missing. I have notes. And there it is. Now I have to walk through the day ahead of me, remembering what was lost, remembering what my parents had to go through with me. I am quite sure that my parents didn’t help in certain ways — nor did the doctors who had no clue about TBI, nor did the teachers who just beat up on me because I didn’t understand. I got punishment, not compassion. I got judgment and strict discipline, not attempts to understand. I got yelled at and yanked around by my mother, and put down and called names by my father, not guidance and examples I could follow.

All in all, it was the perfect storm of ignorance and injury, and here I sit now, looking at the tough row that I hoed all through my childhood… increasingly amazed that I turned out as well as I did. I got hurt. I got hurt early and a lot after that.  Each injury added on the previous one, and it’s only by the grace of God (or whoever else is looking out for me) that I actually ever got help, long after so much damage had been done.

Last night, as I lay in bed all torn up over this, the thought came to me… I am certainly not alone. I am not the only person who has every been injured and not gotten good help. I am certainly not the first or the last to struggle with these things. We all, in some way, have been broken, shattered, lost. And we all in some way have had to battle back against seemingly impossible odds to make of ourselves and our lives what we can. And in the end, it’s not so much about grieving the things that are gone for good — though that’s part of it. It’s more about taking what you can from the experience, building back your life, connecting with other people who have been shattered in their own ways, and helping one another pick up the pieces and go on.

Each of us knows what it is to struggle. Each of us knows what it is to lose. I don’t care if you’re rich or poor, triumphantly super-smart… or now and then dumb as a rock (I’m raising my hand here ;) It doesn’t matter if you’re young or old, if you belong to a certain race or nationality. The fact is, we’re human. And we all have things to overcome — things that are all but impossible, some that sometimes take us down (now and then for good) — and if we lose sight of that fact that we all share, then the world becomes colder and harder and it feels more like a rock spinning through space than a green, living planet that keeps us all alive.

In the end, I have to wonder… if I had stayed super-smart and stayed ahead of all my peers, would I be the person I am today? Definitely not. There is a very good chance I would have no compassion for others, have no patience, have precious little understanding, and I might sail through life with riches and power and influence, but never have the kind of life that is worth living to the fullest. We appreciate so much more, when we lose something we value.

I lost the hope of my childhood, the promise of my early years. But in the end, I still have the present, and I still have my future, and I have a deep and intimate understanding of what it is to lose much that is important. — I understand that on a profoundly personal level. Knowing this makes all the difference. For myself, for my family, and for every person I meet and come in contact with. It’s the kind of knowledge I probably never could have gained, had I stayed in one intact piece.

And for that, I am (somewhat) grateful. It almost seems worth the price.

But still…

brokenbrilliant:

This is a great description of what can happen, and the things to take into consideration. It also highlights some of the problems with seeking legal assistance in trying to recoup financial losses.

Originally posted on braininjuryselfrehabilitation:

Nearly everyone believes that if they are injured at work their employer will help them.  Most people believe this because they are excellent employees and should be backed by their employers.  I just had a hearing to process my recent claims of significant physical injuries for the medical findings.

View original 824 more words

Forget despair – I’m going to exercise

This dog isn’t going down easily

I have to admit, writing about the traumatic / PTSD aspects of TBI has got me a little bummed out. Additionally, thinking about CTE and the NFL players’ suit(s) against the NFL, and pondering the shortened anticipated lifespan of TBI survivors, hasn’t helped my mood at all.

No surprises there.

I did happen upon something interesting today, however — and it both appears to confirm what I have suspected, as well as adds a little more information to my “store”. It also lit a fire under me with regards to my exercise routine.

Check out this recently published paper from Brain – A Journal of Neurology:

Stimulation of autophagy reduces neurodegeneration in a mouse model of human tauopathy

Okay, now that I’ve got your attention ;) what does it mean? Basically, autophagy is the process by which cells digest parts of themselves by breaking down the bits they don’t need or are trying to get rid of, and using them as “food” for other processes. A good example of autophagy is dieting — where your body consumes the fat in some places to fuel its activities. It sounds a bit strange and creepy at first look, but when you think about it, it makes perfect sense — if there’s energy or some other ingredient that’s taking up space in a cell, and it can be used for other purposes, such as energy, then it only makes sense for the cell to break it down and use it up for something else. Our cells do this all the time – and in the case of trying to lose weight, that’s exactly what we want them to do.

Since this breaking-down function is available in cells that want to get rid of extra “baggage” — and tau, the protein which is linked to CTE and other dementia-like brain degeneration like Alzheimers is definitely extra baggage that isn’t doing anyone any good, then wouldn’t it make sense for this breaking down process to be useful when it comes to clearing out tau from brain cells? Apparently, yes. Here’s the summary from the article I found (bold emphasis is mine):

Summary

The accumulation of insoluble proteins is a pathological hallmark of several neurodegenerative disorders. Tauopathies are caused by the dysfunction and aggregation of tau protein and an impairment of cellular protein degradation pathways may contribute to their pathogenesis. Thus, a deficiency in autophagy can cause neurodegeneration, while activation of autophagy is protective against some proteinopathies. Little is known about the role of autophagy in animal models of human tauopathy. In the present report, we assessed the effects of autophagy stimulation by trehalose in a transgenic mouse model of tauopathy, the human mutant P301S tau mouse, using biochemical and immunohistochemical analyses. Neuronal survival was evaluated by stereology. Autophagy was activated in the brain, where the number of neurons containing tau inclusions was significantly reduced, as was the amount of insoluble tau protein. This reduction in tau aggregates was associated with improved neuronal survival in the cerebral cortex and the brainstem. We also observed a decrease of p62 protein, suggesting that it may contribute to the removal of tau inclusions. Trehalose failed to activate autophagy in the spinal cord, where it had no impact on the level of sarkosyl-insoluble tau. Accordingly, trehalose had no effect on the motor impairment of human mutant P301S tau transgenic mice. Our findings provide direct evidence in favour of the degradation of tau aggregates by autophagy. Activation of autophagy may be worth investigating in the context of therapies for human tauopathies.

So, yeah – you’ve got extra proteins gunking up your brain cells after a traumatic brain injury/concussion, and that extra protein isn’t doing anyone any good. Wouldn’t it make sense to use the cells’ own activity of breaking down portions of themselves and flushing them out, to help clear out the tau?

In the study, they used trehalose to stimulate the process in mice, which may or may not be all that useful for my purposes. Trehalose is used in processing a lot of foods, and it’s not uncommon. I’m not sure how therapeutic it would be for me to consume mass quantities of “confectionery, bread, vegetables side dishes, animal-derived deli foods, pouch-packed foods, frozen foods, and beverages, as well as foods for lunches, eating out, or prepared at home,” especially if my body has its own natural processes to move things along. What natural processes, you ask? Exercise. Acute exercise. Researchers have found that acute exercise stimulates autophagy in the skeletons and muscles of mice, and I don’t think it’s a stretch to deduce that it can have the same effects on cells of the brain.

Why not? Okay, I’m probably being markedly unscientific here by drawing conclusions from reading a few articles (scholarly as they may be), but let’s use common sense for a moment. The human body is constantly renewing itself — every 7 years, we get a new body, because the cells have all renewed themselves. If acute exercise is worked into the routine on a regular basis, then wouldn’t it make sense that the autophagy induced by exercise would help the body rebuild itself with new materials, and with less tau?

As a TBI survivor who has a nagging concern about tau-induced dementia later in life, this gives me hope. And while “hope is not a strategy” and my scientific method leaves a lot to be desired, nonetheless, it does help me get past the pernicious, creeping depression that sets in sometimes when I get tired and start to think, “After all those TBIs, what’s the use?”

So, I’m throwing myself a bone, here, and I’m gnawing on it with all my might. I have known for several years, now, that exercise makes me feel and think better when I do it first thing in the morning. And I’ve known for decades that a good hard workout makes me feel like a new person. Researchers seem to be confirming scientifically what I have experienced, and they’re explaining it in ways that make sense to me and my systems-oriented conceptual brain (all the biochemical-speak notwithstanding).

So rather than getting hung up on the idea that I’ve gotten clunked in the head too many times, and that’s that, I’m going to amp up my exercise and really push myself to do more with it. It’s the acute stuff that apparently helps the most, so I need to do more of that. Not to the point of injuring myself, but definitely more than the easy-peasy warmups I’ve fallen into doing over the past six months or so.

Screw despair. I’m going outside to get some serious exercise.

PTSD/TBI Factor #6 – Perpetrating Violence

Here it comes… everybody feels its wrath

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

So far, we’ve looked at how TBI directly contributes to PTSD through proximity, duration, extent of brutality, betrayal, and threat of dying. In all cases, the big way TBI contributes to these factors is through the skewed perception it can create, causing us to perceive “threat” where there is none, as well as amplifying our emotional and physiological reactions to events. There’s nothing like a hyper-activated amygdala pushing the brain’s automatic fight-flight response, to make everyone’s day that much more “interesting”.

And now we come to an area that has particularly strong implications for TBI survivors — perpetrating violence. As Belleruth Naparstek points out in Invisible Heroes (p. 51), we don’t normally think of folks who perpetrate violence as the ones affected by post-traumatic stress. It’s the victims after all, who bear the brunt of it. Right?

Not so fast. Post-traumatic stress which manifests in “more violent outbursts and greater severity of intrusive symptoms, as well as a greater sense of alarm, alienation, survivor guilt, and a sense of disintegration” is prevalent among those who cause harm to others. It’s a subject I’ve written about before in Putting my soul back together, one act at a time, in September of last year, and it remains a serious concern of mine.

See, TBI is all too often accompanied by anger issues. Outbursts. Meltdowns. And violence. I myself have been plagued by violent temper outbursts and extreme mood swings that shook me like a terrier shakes a rat… and I couldn’t do a thing about them. For someone who has long been known as an even-keeled sort of person who can be relied on to stay calm in stressful situations, it was a terrible blow to me to watch myself (like a train wreck) blowing up at people over what I logically knew was a small thing, but which seemed like the end of the world to my frayed wiring.

It was so distressing and so shocking to me, that I rarely brought it up with my neuropsych, and then I played it down because I couldn’t stand having someone know about what was going on inside of me. It was almost too much to take. My sense of honor, my sense of dignity, my sense of propriety, and my feelings for those I loved and cared about and worked with went right out the window without me having any understanding or control over things… and then I had to deal with the aftermath.

And the more I blew up, the more things I threw, the more I melted down, the more intrusive the memories of those times became, and the more I felt like I was in the grip of it all.

It’s no friggin’ fun watching yourself dissolve before your very eyes, and that’s exactly how it felt. Which added a sense of impending destruction/death to the whole experience.

The crazy eff’ed-up thing about TBI is that it can turn even the most mild-mannered individual into a raving lunatic, and it can cause them to do things they would never, ever choose to do on their own. It can turn even the most mellow individual into a violent perpetrator. I’m not trying to scare anyone, but at the same time, this is the dark side of TBI that people don’t like to talk about. And the toll it takes is something that really needs to be looked at.

Now, I don’t want to say that everyone who does violence to others is not in control of their behavior. Some people very much are. But with TBI, the right combination of fatigue, malaise, agitation, restlessness, and anxiety-producing sense of lost control, that nastly little switch can get flipped and you can find yourself becoming a stark raving lunatic over the stupidest little sh*t.

This is not to say that it has to — or should — stay that way. If we can see (or are informed) that our behavior is unacceptable, it’s our responsibility to fix it and make sure it doesn’t happen again. But all too often — especially at the start of your recovery — a lot of incidents can happen that result in feelings or experiences of violence.

And that takes a toll.

It takes a toll because you see and hear yourself doing these things, and it takes a toll because you may not be able to do anything about it, until you gain understanding and self-awareness, which can take months, if not years.

In the meantime, you’re racking up some serious mileage in the PTSD department. And ultimately that’s got to be dealt with constructively, or it can — and will — drag you down in the long run.

Give yourself a chance to be really good

How good can you be? Probably pretty fantastic

I had an interesting discussion with a friend the other day. Actually, it wasn’t a discussion. They just declared that there are no bodhisattvas (or perfected human beings) on earth today. Everyone is just human. There are no fully developed individuals – anywhere – we are all just human, just fallible, and no more.

Now, they’ve said this before. And it kind of goes against what I’ve heard other people saying — some say that we are all perfect in some way or another, and that there are perfected human beings among us, we just don’t always know it. And even those perfected individuals sometimes don’t know it, themselves.

Okay, so those are two sides of the question, I suppose. I’m sure there are more, but for now, I’ll just stick with these two “bookends” of the discussion.

I guess I come down in the middle somewhere. Maybe I’m too much of an agnostic, to pick sides. Either one could be right, in some respect. And maybe in some parallel universe, each one is right. But right here, right now, in this universe, I have to say I kind of agree with each side.

I really do believe that it is possible for people to be their absolute best at given points in time. The thing is, those points tend to be irregular and sometimes erratic. I know I’ve seen it in my own life — moments of brilliance or amazing comprehension or the ability to do things that I wish I could do every single day, but apparently can’t. There are many, many factors that come into play when it comes to why we do what we do, and how we do it — too many to count.

But still, it is possible for us — yes, each and every one of us — to have those moments when we are the person we long to be.

And the fact that we are sometimes the exact opposite of how we want to be, shouldn’t keep us down or hold us back. All of us fall short, sometime or another. Some of us fall short more than others — and most of us fall short more than we’d like. Yet, that shouldn’t keep us from living our lives in a way that lets us really recognize and enjoy the ways we get it right. We may be human, but we are all evolving… and so long as we keep an open mind, get plenty of sleep and eat right, spend time reflecting on our missteps and the ways we’d like to change… and well, just keep trying… we cannot help but get better.

It’s just how we’re built. And that’s a great thing.

One of the big potholes on the road of my life is my continual (and sometimes exclusive) focus on all the things that go wrong, each and every day. I tend to be in “problem fixing mode” most of the time – I like to fix things, and I like to find things that need to be improved. And I am one of the things that could really use some improvement, sometimes… if not most of the time. So, I end up being so consumed with the things I’ve done wrong or mis-managed or mis-handled, or screwed up, I get lost in the maze of just being human, and I can’t distinguish between things that are caused by my TBIs and things that people just come up against as a matter of being human.

In a way, that kind of sums up my whole TBI recovery process. It’s not about recovering specific abilities the exact way I used to do them. It’s about evolving my approach to those things I really want to do well, and gaining a new kind of facility, a new kind of expertise, so I can once again participate in those parts of my life that have always been important to me. It’s about allowing myself to not only be human and fallible, but also allowing myself to be fantastic and brilliant in those moments when I really am. Being on constant alert against things that could be “wrong” — especially when those things are a part of me — is exhausting, and it wires me for a hair-trigger temper that doesn’t help anyone at all.

I am not the same person I was in 2004 before my last TBI. Thank heavens for that. I’m also not the person I was before each of my other 9+ TBIs. And that’s fine. Because the brain is a big place and it’s built specifically to adapt and change and reconnect in new and novel ways. There are a number of things I really miss — like being able to sit down and read a book for fun, or being able to function really well at work under distracting circumstances.

Then again, a lot of the things I’ve lost tolerance for were time-wasters or they were more ways for me to distract myself from what I wanted most to be doing.

My injuries have focused my attention much more on the basics, which is a good place for any of us to focus. Regardless of our history, regardless of what’s gone right and what’s gone wrong, keeping things simple and not getting carried away with all sorts of self-manufactured drama is a very helpful way to live life.

That being said, I’m going to get on with my day. I found some more really good reading (not light stuff that I used to enjoy — heavy, ponderous scientific research that has the potential to really change how I view my life and how I live in general) and I have a bunch of papers to download. I also have some chores to do and some obligations to fulfill. It’s all good.

I just have to remember to let it be good.