After concussion – I’m not stupid, you just think I am

This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:

  1. Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
  2. The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
  3. It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
  4. The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.

So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.

The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.

In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.

I do not have a disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.”  It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!

I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.

The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and  past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.

Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.

But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.

It’s best that I just steer clear.

And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTS about people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.

Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.

For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.

I am not an idiot. I am not simple-minded. I am not intellectually impaired.

I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.

Is that so much to ask?

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 1

rat-brain-dendridic-changes

If rat brains can change, due to environmental enrichment, so can ours — click to read about helping with stroke (which also applies to other sorts of brain injury)

I’m pretty much of a Type A person — although my competitive streak targets myself, rather than others.

Wait, no… I do instinctively compete against others, as well.

I must admit, I’m happiest when I’m Alpha. This is not in a mean-spirited way or in a way that is driven to destroy everyone around me. I’m just happiest when I’m at the top of my game, and the person I compete against most, is myself.

Anyway, I believe that Type A personalities have a special proclivity to TBI / concussion, because we push it. We take chances. We test the limits of the envelope. And we do it with a single-minded focus that blocks out all dangers… sometimes till it’s too late to protect ourselves.

And then we can get hurt. Frequently. We can end up with persistent symptoms, because on top of getting hurt, we haven’t taken time out to rest, and that concussion / TBI is telling us to keep going at an even faster pace.

See, that’s the thing with concussion / mild TBI — all those chemicals released in the injured brain are inciting an organic fight-flight response that impels us to go-go-go. I personally believe that response is due to an evolutionary advantage that preserved the human race over the ages. Once upon a time, when everyday life was a lot more physically dangerous than it is today, our brains had to evolve to get us up and out of dangerous situation ASAP. And those who didn’t adapt to switch into get-the-hell-going hyperdrive, ended up stuck at the bottom of the pile of rubble. Or they got the rest of their body chopped in half by that sword-wielding opponent who gave them a whack the first time.

Back in the day, being overrun by invaders, going to war with hand-to-hand combat, being charged by a predator, and extracting yourself and your loved ones from a natural disaster were all more frequent than they are today. And those whose brains got them UP and OUT — who kicked into GO-GO-GO-GO!!! action, got to live to see another day. I’m no evolutionary biologist, but I suspect that those whose instincts did not get them moving ASAP probably died out a long time ago.

So, small wonder that when you get hit on the head, your brain/body drives you on and on and on, without any apparent reason. The brain is trying to get away from danger. The only problem is, the danger is inside the skull. And there’s no escaping that.

Anyway, in terms of being a Type A personality, we can really harness that drive, that ambition, that impetus, to recover from our injuries. Even if you can’t get access to a neuropsychologist to consult with, there are a number of other options available. Of course, part of the problem is that there are so many options, and not all of them are reliable or credible. Concussion has turned into big business, and there are plenty of people ready and willing to make a ton of money off it. But not all of them know what the hell they’re talking about. As long as they sound authoritative, that’s all that matters to some people.

So, what do you do and where do you turn?

I think a good place to took, is to other folks who have experienced successful recoveries from concussion / TBI. There are books out there, along with blogs. Unfortunately, the discussion can often drift towards commiseration, rather than remediation. People want to be supported and know that they’re not alone. Of course they do. We all do – including me. Unfortunately, a lot of times (and I’m guilty of this), the discussion ends up mired in detailing all the issues, rather than how to fix them.

Now and then, though, you can come across stories of success and triumph. Here’s one paper about success stories you may like. Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series (click to download the PDF). It shows quite clearly that recovery after brain injury is possible, and it’s not a death sentence.

No matter what others say.

This discussion to be continued – click here to read on…

Here are the materials I downloaded in 2010, which you may find useful:

 

 

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 2

Improvements in total time to complete the pin-plugging test using long pins for subject CC. Improvements were found after 9 weeks of intervention for the affected hand.

This is a continuation of an extended thought process – click here for the first part.

Science (especially imaging) is starting to reveal what has always been true of the human system. It changes over time, responding to stimuli. The idea that brain injury is permanent and can’t be overcome is hogwash, as evidenced by research, studies (like the one referenced in the image on the right, which shows how Long-term sensory stimulation therapy improves hand function and restores cortical responsiveness in patients with chronic cerebral lesions), and recorded experience. The weird thing is, despite all the studies that are coming out (and have come out for decades) about how the brain does change and adapt, if challenged, there are still those who believe that brain injury is irreversible, and once you lose certain functions, you’re screwed.

Oh, hell no. Sorry, I don’t buy it. I don’t care what anyone says.

Brain injury survivors do NOT need to resign ourselves to living less-than. We do not need to “adjust down” our expectations to a “new normal”. That’s ridiculous. And the fact that so many people have been told they had to do that, and have just given in to doing that… it makes me a little sick to my stomach.

Of course, there are many reasons for this. Lack of information. Overwhelm. Cynicism. Defeat. Lack of imagination. Rehab industry bias against brain injured folks. Etc.

Also, Type A people tend to intimidate people. And Type A people with unresolved TBI issues can be a real terror — hell on wheels. So, small wonder that folks in the rehab business so often encourage us to just accept the “new normal” as “what it is”. We can scare them. Accepting our limitations is sometimes their way of telling us to back the f*ck off and quit intimidating us. It’s a way of seeding doubt in our minds that makes us less confident, less sure, less cocky. It’s a way of making them feel less inadequate — and shifting the power structure of the working relationship from Alpha Us to… them.

Plus, all too often, they have lacking information and poor practices, so they are unable to produce the kinds of results their clients/patients need. They keep trying to achieve results with crappy tools and partial information, which is like trying to run a marathon wearing on sneaker and one roller skate. They keep trying, of course, because that’s what the insurance companies tell them they have to do, and that’s what their peers are telling them to do, and that’s what their industry is instructing them to do. But they can never get the results they’re looking for… which is no wonder, if they’re not willing to test the limits of what is “known”.

So they give up. Because they won’t look any further. Maybe they’re actively discouraged by the insurance industry, which only trusts “tried and tested” approaches. Maybe they’re put off by their peers who are jaded and cynical and uninformed. Maybe they lack intelligence and imagination. Or maybe they just get tired.

Personally, I suspect it has more to do with belief system and poor information, than it has to do with malicious intent. People are just ignorant, in the objective sense of the word. They just don’t have the right information. And not all of them are Type A personalities. So, good luck getting help from someone who is not Type A, when you are a person who’s ambitious, driven, and bound and determined to succeed…

Fortunately, it doesn’t have to be that way — or stay that way — if you’re a  Type A personality.

The Give Back program, which I discovered in December, 2010, has played an important part in my recovery. Just the stated belief that it is possible to recover from Brain Injury was a revelation, after being immersed in a sea of depressing messages like “Well, the brain can’t be changed past a certain point in childhood”… “You might get some of your functionality back, but don’t expect much more” … “You’ll just have to lower your expectations from life” and “Just be happy you’re doing as well as you are.”

It sorta kinda makes my blood boil, hearing all that weak-ass drivel.

Because none of it is true. Just because the charter members of Underachievers Anonymous can’t figure out brain injury recovery, doesn’t mean it can’t be done.

The Give Back materials really overcame those lame objections with actual case studies of folks who recovered successfully and went on to achieve great things. The program also gives you specific information and things you can do to recover. The most helpful tip had to do with building in a feedback loop for my daily life — recording things that didn’t go so hot, and figuring out how I could do them differently next time. I was really into that, for the first few years after I found the materials, but then I backed off on it. I’m starting up again, now that I’m beginning a new job that’s going to put new demands on my system, because it really helped me a great deal in the past, and I have every expectation that it will continue to help me as I move forward.

If you’re a Type A person with drive and ambition and the need to be constantly improving, you’re a perfect candidate for taking your recovery into your own hands and actually succeeding at it.

One of the things that’s really bothered me, over the past several years, is how people tell me now that I’m more mellow than I was, less edgy, less “Type A”. Now, I get that it’s an improvement that I’m not always gunnin’ for a fight, and I’ve backed off a lot of the aggression. But I have also lost the edge that used to keep me on top of things and moving forward. This, to me, is not an improvement. And the longer I recover, the more functionality I get back — and the more I realize I still lack — the more motivated I am to really kick it up a notch.

Discovering Reuven Feuerstein and the Feuerstein Method has been just the boost I’ve been needing to really move forward — possibly by leaps and bounds. Fundamental to the system is a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.” That’s a belief I share — it’s more than a belief, it’s a known fact for me. It has been since 1983, when I came across a picture of rat brains that had been changed by being in an “enriching” environment. I’ve been convinced of the mutability of the human system for over 30 years, and I’m living proof that positive change — recovery — is possible.

And just as it’s possible to positively impact our own recovery, it’s also possible to impact others’ recovery, as well. It’s possible to create positive change — transform our surroundings — by our direct engagement. We have to know what we’re looking at, of course, and we have to know how things work. And we have to know how to effectively act for change. The beauty part is, by observing and being open and objective, we can learn as we go and adapt ourselves to our surroundings.

When you’re Type A, you have a certain kind of personality. You have a proclivity for achievement. Why the hell any non-Type-A person would tell a Type A person that something like brain injury recovery isn’t possible, is beyond me.

Never mind all that — On-Ward!

Here are the materials I downloaded in 2010, which you may find useful:

 

Change. It’s up to me. It’s what I do.

Yes, it does

So, it’s a beautiful day. Unfortunately, I only got about 6 hours of sleep last night. I stayed up too late and woke up too early. I’ll remedy that later with a long nap. That’s the plan, anyway.

I’ve got a call in a little bit with a Feuerstein Method practitioner, who helps people rewire their brains with specific combinations of exercises, along with a highly interactive approach. They live relatively close to me. Same part of the state. So maybe I can meet with them.

I’ve been reading up on the Feuerstein Method, and it’s very much in agreement with what I believe about the human brain, the human system, and all the latent abilities we have — just waiting for us to bring them forth. A great in-depth overview of the method’s main assessment “device” can be read here: http://acd.icelp.info/workshops/theoretical-material/lpad.aspx. It’s a lot to take in and digest, but the bottom line is, it’s a system that is based on a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.

And that works for me.

Basically, the bottom line is that the human system is built for change, and the Feuerstein Method harnesses that, and then directs it by 1) understanding how a person learns, as well as the degree to which they are able to adapt, and 2) using a highly interactive “mediation” approach between the helper and the person who’s seeking help. It’s mutually interactive approach which makes all the sense in the world to me.

And I wish I’d found it sooner. Something keeps nagging at me about my recovery not progressing as quickly as it could have. I firmly believe the human brain can change dramatically, if it gets the right kind of help. And I haven’t really been getting as much direct help as I would like. My sessions with my neuropsych have been useful in terms of being professionally productive. But there are many other areas where they just cannot fathom the difficulties I’m having… let alone take action to address them. They’re just not that kind of neuropsychologist.

But I guess I had to bump up against the upper limits of my ongoing TBI rehab, in order to get to this point. I’ve pushed the limits of what’s possible in a conventional neuropsychological context, and I’ve wrung more out of that, than I think was ever expected of me. I’ve had phenomenal progress, over the past years, which has benefited me more than words can say.

I’ve also really experienced a great deal of frustration in the process, but that’s not all bad. First, it’s forced me to think critically and come up with my own ideas and approaches about things, where the ones offered me were not working. Second, it’s really anchored a deep compassion in me for others in similar straits. I think I’ve got more empathy for others, now, and I have a better understanding of the difficulties others may face on a regular basis. So, it has been quite useful for me to work with a neuropsych.

On top of that, I’ve been able to have a positive effect on them, so that’s good.

And in the end, it’s taught me to be a lot less trusting, across the board, of “experts” who claim to to have the market cornered on a specific discipline. I tend to be naive and trusting of folks in positions of authority — especially the folks I like and get along with. But they’re as human and as flawed as the next person, so…

Anyway, it’s all connected and everything has its place.

Next…

What’s next?

  1. Getting a better, more in-depth understanding of my deficits — and yes, they are deficits, not just differences or challenges. There are real ways I need to improve, in order to perform at my best and have a high quality of life.
  2. Identifying where those deficits are holding me back, and where fixing them will help me. This is central to recovery, because I have to understand the context and the meaning of my work, in order to stay motivated.
  3. Working on my exercises again. I have gotten away from doing exercises, and I am getting back to them. I used to do Dual N-Back training and some Brain HQ training, which seemed to help me. But I left that behind — I think when I was starting to get better. I often do that — I make progress up to a certain point, and then I wander off and get caught up in other things.
  4. Making sure I get plenty of rest and I eat right. One of the big things that holds me back, is how tired I get. I think this is why I abandon things I enjoy – I get into them, I work myself into a frenzied state of enthusiasm, and then I wear myself out. When I get tired, I feel bad… so the very things that used to give me joy, now seem to make me feel like crap. It’s a recurring cycle, which I can break, now that I understand it.

The thing I need to understand in all this — and remember over time — is that I tend to progress in “fits and starts” and I don’t always need to push myself as hard as I do. And in other times, I need to really push myself much harder than I feel like. I can generally figure out what my system needs, if my head is “not in the mood”. For some reason, it’s contrary.

But that can be a good thing, because it ensures that I still have my own mind, no matter what the rest of the world says.

If I’m going to see change in my life, it’s going to need to come from me. I look forward to finding someone who can work directly with me in a more proactive way, but no matter what, I’ve got to be the one driving the change.

After all, change is what I do.

When dead-ends work in my favor

Note the two tracks on either side that continue forward

My specific discontent with my neuropsychologist is providing impetus to expand and look in more directions for input and ways to progress. That’s working to my advantage, because it’s easier to move on to the next level, when what used to work… doesn’t anymore.

For work situations and professional interpersonal challenges, they can be very helpful.

But in everyday personal connections and relationship matters, not so much.

In the ways they are helpful to me, they have been indispensable.

And in the ways they are NOT helpful to me, they have also been indispensable. Their limitations are forcing me to branch out and seek additional input and help elsewhere.

Which is good. Because there is a whole new emerging world of “brain hacking” that is too “fringe” for them to consider seriously. They almost can’t consider it, because to do so would compromise their professional reputation and put them at risk for losing everything they have worked so hard to build up. They’re a sitting member of a very important organization, so they have to be conservative and avoid any appearances of quackery.

Anyway, I’m digging into new approaches with literally modifying my brain’s wiring and addressing issues that I’ve had for a long, long time. I’m looking at ways of getting metrics on what fundamental deficits I have — and yes, they are deficits, not just difficulties or differences.

They are deficits, and I’m tired of putting them in terms that make them easier to live with and accept. I am tired of accepting my limitations and just putting up with them. And I may have found a way to actually address them at a fundamental, organic, structural way.

More on the Feuerstein Method later.

For now, it’s time for me to be functional and cut this blog post short. I need to get to work, because I’m ending the day early for an appointment with another counselor I see for family / pain / health issues. This counselor poses a completely different set of challenges for me, and it’s actually good practice for me to critically assess what they tell me and figure out if I agree with them, or not. A lot of times, I don’t, and it really tweaks me. It puts me in a foul mood.

Today I want to do things differently. And so I shall.

Onward.

When getting no help is the best help of all

Well, that was no help at ALL — or was it?

I had a really good session with my neuropsych last night. But not for the reasons you might think. I came away with a renewed sense of really being capable of dealing with things on my own. In terms of having someone to bounce ideas off of, as well as sorting through the professional social landscape, they have been incredibly helpful to me.

I’ve been having a lot of physical/logistical challenges, lately. Vision, balance, headaches… feeling not-quite-here. It’s been pretty distracting, and it’s been adding to the overall burden of my daily life. The job changes and my spouse’s mental/cognitive status have been putting a lot of pressure on me. And I’d like to clear out whatever physiological and logistical issues I can, so that I can free up more energy to deal with the bigger emergent issues in my life.

The issues are good, as well as bad. I have a new job coming up, and I want to be in top shape to step up.This is really important to me — a new chance to really jump-start my life to where it should be, by now. My TBI in 2004 not only took the wind out of my proverbial sails, but also blew directly against me… alternating with stopping completely, so I was stuck in the doldrums.

So, now I have a chance to get back. I’m feeling a little pressure — but even more than that, a huge sense of promise, that I want to live up to, to my fullest.

So, I had gone to my neuropsych appointment with the hope of discussing these issues with them and coming up with some solutions.

However (and I’ve known this for years), they are a particular brand of “mind-only” Buddhist and they believe that we create our worlds with our minds and thoughts, and the difficulties I’m having are just exacerbated (if not created) by my having a skewed understanding of myself, who I am, and how things “should” be in my life/the world. They’re also very much into the idea that we create suffering in our minds, rather than it coming from the outside world. And that’s about the most bizarre distortion of Buddhism I’ve yet to hear. It’s common with American Buddhism, which is a strangely morphed version of “the original” that has people outside the West shaking their heads in bafflement. American’s (and perhaps a lot of Westerners) have their own spin on suffering and its causes, that is unique to them… not to Buddhism.

I’ve been through this kind of exchange with them in the past, and it always leaves me frustrated and exasperated. And it makes me want to fire them. I go to them for help with very real issues that I am reluctant to share (and have difficulty talking about), and all they can tell me is, “Change your perception of your difficulties, and that will relieve your suffering.” Oh My God. I just re-read that, and it sounds so ridiculous. Ludicrous. And it could tweak me into a migraine. But I’m not going there, right now, thank you very much

I’ll resist the impulse, because there’s a valuable lesson coming from this.

It’s a very strange sort of dissonance that takes place in that office, some days.

I have the hardest time actually telling people about my difficulties, and admitting how hard things have been for me. It’s so much easier to just cover it up and suffer in silence. Not always suffer, but just suck it up and deal with it. But there are times when I reach a point where I just can’t hold out anymore, and I need to discuss my concerns with someone — and also come up with a plan of attack.

So I work up the courage to go to their office with the intention of finding solutions to issues I’m having, which have been a huge source of distress to me. And we end up talking about how I perceive these issues that are causing me so much distress… “showing” me how my attitude is actually adding to my discomfort. I could be wrong (and I often am because my judgment gets all turned around and paranoid and narrowed, especially lately), but they seem to be encouraging me to acknowledge things as they are, see the hardships and accept them, and not let them get me down or stop me from just living my regular life.

Oh my God. Some days it is so exasperating. I’m genuinely having issues, and they really seem to think it’s all in my head.

Right.

Should I stay or should I go, now….? (I hear The Clash singing in the background.)

It’s complicated. This individual has helped me tremendously, in terms of getting me back on track with my professional life. That’s where their “sweet spot” is. I don’t have anyone close to me in my life who is actually mainstreamed in the way that I am. My family is very small-town and rural, which is not a bad thing. It’s just very different from my own immediate world. And my family is very religious in ways that are different from my own. With my neuropsych, I have had huge success in sorting out my work life, my relationships on the job, understanding the personalities I’m dealing with, as well as workplace dynamics, and that’s been more valuable than gold to me.

The place where they do NOT help me, is with my logistical issues and all those weird, distracting symptoms and anomalies that keep me on my toes.

Those, I need to sort out in a different way.

Which I shall do. I’ve found a rehabilitative neuro-optometrist near me, and I’m going to make an appointment with them to rule out any vision issues which could be screwing up my balance, as well as messing with my other senses. I just need to rule things out. I hope they take my insurance – I’ve got crazy-good insurance right now that lets me go see any specialist I want, without a referral needed. And I can’t afford a non-insured visit, quite frankly.

I’m also going to follow up with another neurologist about the autonomic testing. And I have a follow-up appointment with the physiatrist in a couple of weeks. I’m going to see if I can move that up — or out — because the appointment coincides with my first week on the job, and I need to clear up my schedule for that.

Plus, I’m really bumping up my commitment to fitness, keeping healthy, and strengthening myself. I’m dealing with the issues with my upper back (my traps are not as strong as they should be, and my upper body needs more strength, while my lower body needs more flexibility to accompany the wider range of activity I’ve been giving it. I no longer sit all day, like I used to, and I’ve been walking/hiking a lot more. So, my legs have to get used to that.

I’m basically taking things into my own hands, health-wise. And I’m investigating new ways to rehabilitate myself.

There’s a world of hurt under the surface of my daily life, and I can’t seem to get help from the “standard set” of people I’ve been looking to. So, I’m branching out and expanding.

And that’s exactly what I’ve been needing to do.

Onward.

Augh! Where are the gist reasoning training exercises?

“Getting the Gist” means narrowing down a lot of different details to what is most important, and understand it. If you can restate the gist in your own words and have it mean the same thing as the original, you’re golden. Print out this page to practice your gist reasoning.

Okay, so “we” now know that gist reasoning is a more accurate indicator of how well folks with TBI / concussion can live their lives, than other sorts of testing, like memory and IQ.

Those of us who have been working through TBI issues, lo these many years, have known it a lot longer… A hearty Welcome to those of you in the scientific / academic community who are just now catching up.

And published research also now shows that gist reasoning can be strengthened with exercises.

However, there seems to be a dearth of actual exercises you can do online. That’s odd. Because:

A) Folks with long-term TBI issues can be profoundly marginalized from the mainstream, and the Internet is their one reliable connection to the rest of the world.

B) Online training is incredibly easy to put on the web. It may be difficult to design, but once you’ve got it designed, publishing it is a relative breeze. There are many, many people who do far more complicated things on a regular basis. Finding decent developers is not rocket science.

C) You’d think that everyone in the country would be falling over themselves, getting gist reasoning training online, because helping people with TBI better handle their lives can translate to improved daily functioning, which can translate to higher employment rates, which can translate to more tax revenue and lower needs for social services.

That’s what comes to my mind, anyway.

And yet, looking around online (granted, I only spent a few hours between yesterday and today, but I’m a skilled searcher, and if I can’t find it… well, it’s really hard to find), I’m not seeing any gist reasoning training readily available, other than some that are intended to teach kids how to read, think, and understand.

There doesn’t seem to be much developed for adults, especially those recovering from brain injury.

I did find a Gist Template for kids, which I have modified for TBI-surviving adults and posted on my site here: https://brokenbrilliant.wordpress.com/brain-injury-recovery-tools/gist-template-for-tbi-recovery/ You can print it out and use it to practice your gist reasoning. It’s very simple, but I’m going to try it myself and see if I notice a difference.

Sidebar: You know, I realize now that a lot of what I’ve been doing with my neuropsych over the past 7 years, is working on my gist reasoning. We spend a lot of time with me talking about my days, my experiences, my future plans, and then summarizing them at the end. At times, it seems so tiresome, to have them repeating back to me what I think I just said, but now I understand the method to that madness.

And I’m glad I did not just get up and walk out on them, like I wanted to do, so many times.

I’m glad I just went with it.  Because it works. My deficits that were found, 7 years ago, are still pretty much there without change. However, my ability to live my life fully as well as engage with things around me and also have a higher quality of life than ever before, has dramatically increased. Phenomenally, in fact.

So, being all incensed about the lack of online tools for TBI recovery, I’ve started adding gist reasoning tools to this site. I’ve found some really intriguing ideas, that I think can be replicated… and possibly improved. And there appears to be a massive gap in online gist reasoning training, specifically for TBI survivors. Plus, a lot of this is not rocket science and it can be replicated — even improved upon — quite easily.

Of course, in the coming months and years, I’m sure there will be a flurry of products to help people with this stuff… In fact, there already are tools out there, like Lumosity and BrainHQ. But what about those of us who don’t have all sorts of money to drop… or who have difficulties navigating online payments… or who don’t have (or want to have) Flash on our browsers? Or who just want a “quick hit” of a test to help us sharpen up a bit?

A lot of us are getting left behind – and for no good reason, other than that people either aren’t aware, or they haven’t bothered to try and fix the situation.

But never mind that.  I’m going to do something about it, rather than just bitch and moan.

So, in summary (here’s where I work on my own gist reasoning):

  • I’m really encouraged by the recent research that shows that the degree of TBI recovery is demonstrated by a person’s “gist reasoning” ability — the ability to “get” the point of a mish-mash of details from situations. I’m also very excited by the fact that gist training can — and will — help us to recover.
  • I’m frustrated by the lack of online information about gist reasoning, along with exercises to strengthen it. I’ve searched… and I have not found much.
  • I don’t understand why there aren’t more tools online — especially for TBI survivors, whose main contact with the world may be their computer and Internet connection. Online publishing is actually quite simple, and it could be a great way to alleviate a lot of suffering.
  • Never mind what others are doing/not doing. I’m going to put together my own tools and post them here.
  • This is my first contribution towards fixing a situation that exasperates me: A Gist Template for TBI Recovery

More to come.

Onward.

Getting off coffee – as quickly as I can

Say it isn’t so

So, my new neuro encouraged me to get off coffee to help my migraines.

Oh, great wailing and gnashing of teeth!!! How can anyone expect me to do away with coffee?! It’s ridiculous. Why would I do away with my last real vice (aside from super-dark chocolate)? It’s the only thing that helps my mood and thinking when I’m dragging — which is a lot — generally within 4 hours of waking up and living my full-tilt-boogie life.

I scoffed at the very thought of it. Give up coffee. Yeah, right. Not gonna happen.

Why would anyone ask me to do such a thing — especially for headaches? I always thought that caffeine helped headaches, since so many headache medicines (including “Migraine formula” versions) have caffeine in them.But apparently, it’s the other way around. It doesn’t help. It hurts.

Here’s how I understand things now, based on what I’ve learned in the past 48 hours.

I found an article over at Lifehacker.com What Caffeine Actually Does to Your Brain and it was kind of sobering for me.

I’ll quote from the article:

Right off the bat, it’s worth stating again: the human brain, and caffeine, are nowhere near totally understood and easily explained by modern science. That said, there is a consensus on how a compound found all over nature, caffeine, affects the mind.

What Caffeine Actually Does to Your Brain

Every moment that you’re awake, the neurons in your brain are firing away. As those neurons fire, they produce adenosine as a byproduct, but adenosine is far from excrement. Your nervous system is actively monitoring adenosine levels through receptors. Normally, when adenosine levels reach a certain point in your brain and spinal cord, your body will start nudging you toward sleep, or at least taking it easy. There are actually a few different adenosine receptors throughout the body, but the one caffeine seems to interact with most directly is the A1 receptor. More on that later.

What Caffeine Actually Does to Your Brain

Enter caffeine. It occurs in all kinds of plants, and chemical relatives of caffeine are found in your own body. But taken in substantial amounts—the semi-standard 100mg that comes from a strong eight-ounce coffee, for instance—it functions as a supremely talented adenosine impersonator. It heads right for the adenosine receptors in your system and, because of its similarities to adenosine, it’s accepted by your body as the real thing and gets into the receptors.

Update: Commenter dangermou5e reminds us of web comic The Oatmeal’s take on adenosine and caffeine. It’s concise:

What Caffeine Actually Does to Your Brain

What Caffeine Actually Does to Your Brain

More important than just fitting in, though, caffeine actually binds to those receptors in efficient fashion, but doesn’t activate them—they’re plugged up by caffeine’s unique shape and chemical makeup. With those receptors blocked, the brain’s own stimulants, dopamine and glutamate, can do their work more freely—”Like taking the chaperones out of a high school dance,” Braun writes in an email. In the book, he ultimately likens caffeine’s powers to “putting a block of wood under one of the brain’s primary brake pedals.”

It’s an apt metaphor, because it spells out that caffeine very clearly doesn’t press the “gas” on your brain, and that it only blocks a “primary” brake. There are other compounds and receptors that have an effect on what your energy levels feel like—GABA, for example—but caffeine is a crude way of preventing your brain from bringing things to a halt.

So, basically, it’s keeping my body from putting the brakes on, disguising fatigue from the receptors that are built to realize when there’s a bunch of adenosine in my system.

That can’t be good, if I’m running out of steam and genuinely need to rest. Basically, it sounds like caffeine is tricking my body into picking up speed, when it should be doing just the opposite.

I kept reading… and when I Googled “coffee neurotoxin”, I came across this article: Coffee, caffeine, performance and you.

I quote again:

Caffeine is neurotoxin alkaloid. It stops insects eating plants. It works by being a very similar shape to adenosine, a nucleotide which is very important in energy transfer and neurotransmission. Adenosine inhibits nerve firing because it prevents the release of excitatory neurochemicals such as serotonin and acetylcholine.

The structure of caffeine as elucidated by Hermann Emil Fischer.

Caffeine settles into the adenosine receptors in the surface of neurons and in doing so, prevents adenosine itself from getting in there. Therefore no receptor activation can occur and the effect is just the opposite. With no adenosine in place to tranquilise the nerve, excitory neurochemicals will be released. Blood vessels constrict in your head and neck, the rate of nerve firing increases, your blood pressure and heart rate may rise and you experience a renewed interest and vigour when it comes to your Excel document.

Your higher cognitive function is now improved. Even what you can see is enhanced. The stimulation of nerves which use acetylcholine to send their messages affects a variety of areas in the body and brain. The visual cortex is one such area and drinking coffee causes an enhancement in our ability to process the shape, colour and location of visual objects.

 So, here’s this neurotoxin getting into my system, pumping me up and cranking out those neurochemicals. It might not seem like such a bad thing, but I’ve also heard that part of the excitory activity actually comes from the body’s defense response to a perceived threat from the caffeine, which some have called a natural pesticide. So, my system is getting a dose of pesticide and going into fight-flight mode to defend itself from this threat I’m introducing on purpose, which then makes me feel like I’m doing better, when it’s really the adrenaline that’s coursing through my veins that’s telling me that.

I don’t actually become better. I just feel like I am.

So, here’s what I take from this whole little 48-hour research investigation of mine:

Caffeine is bad stuff — especially if you have issues with fatigue and TBI. I mean, seriously, when I’m fatigued, I need to rest and recuperate, not push myself through like I always do. That fries my system and makes sure I’m in a persistent state of fight-flight. I know for a fact that that’s no good — it makes it difficult to learn and use higher cognitive functions. And the longer and more intensely I use caffeine, the more I’m stressing my system and whacking it out and jeopardizing my recovery.

In TBI recovery, you need to rebuild connections in your brain and re-learn things your system has (in)conveniently forgotten. Fight-flight marination in adrenaline impairs learning. So, if TBI recovery is dependent on learning, then coffee, tea, caffeine, even chocolate, are all a threat to my successful progress.

I had no idea.

It would have helped, had my neuro actually explained all this to me in a way I could understand. But it really took a passionate raw-food vegetarian fruitarian Australian dude living(?) in Thailand to make it clear. Here’s his expose that started turning things around for me:

Anyway, there it is. More to come on this, but for now,  it’s time to seriously cut out the caffeine.

 

So, my neuropsych HAS been listening…

Okay, so, since 2008, I’ve been seeing a neuropsych for my TBI issues, and for years, it’s felt like they had no idea what I was actually talking about. I couldn’t detect a response from them or much indication that what I was telling them was actually sinking in.

Reading their summary report to my neuro, it’s clear that I’ve been wrong about that. They have been listening, and it’s a pretty moving experience to realize that some of the limitations have been on the side of my perceptions.

They’ve been listening and getting what’s going on with me.

I just didn’t realize it. All along, I’ve been missing that piece. Oh, well. At least I’ve haven’t been erring on the side of unjustified faith. Thinking that my neuropsych has been listening, while they haven’t heard much at all, would be far worse.

So, this is good. It’s a good place to be right now. There is a chance that my insurance will no longer cover these sessions, after the end of this year, so I may be looking at another six months with them, tops.

That will make me very sad. But life must go on.

My head is all in a whirl over this realization. Time to go for a long walk in the woods.

Gearing up to read my neuropsych’s latest report

Hmmm… let’s see what’s in there

So, back in 2012-2013 I had a second neuropsychological assessment done to follow up and see where I was. It’s taken about a year and a half for my neuropsych to actually compile the results. Kind of blows my mind that it takes that long to light a fire under someone, but according to another neuropsychologist I met, that kind of delay is common.

You have to keep pestering people for the results. I had been doing that, but it wasn’t until I lined up this new neuro (who actually knows my neuropsych) that my neuropsych got it in gear and started making some serious progress.

Now I actually have a report sitting on the desk beside me, ready to read. I’m having some breakfast (after my morning workout) before I dig in.

I can’t believe it’s the weekend. I’m starting to feel some relief with the projects I’m on, because in a couple of months they’ll be behind me. And then I can transition to this new team structure they’re creating at work — more collaborative, more social, less division between all the different types of people assigned to projects. They’re putting us all together, which will be interesting. It will also keep me from isolating and avoiding people. And it will keep others on my team from doing the same. Techy people can be … well, strange. We can be very social, yet very private.

Should be interesting to see how that comes out.

I’ve got an interesting day ahead of me. I have some errands to run, but overall, my required activities are limited. My spouse is going away on a business trip next weekend, so we have to do some prep for that. Getting all their supplies together and whatnot.

And I have an interesting week ahead of me, too. I’m getting my MRI on Wednesday morning, to check my brain — especially my cerebellum. I’m doing some research on gadolinium, the contrast agent they’ll be using. The info on gadolinium isn’t great, so I’ve stopped reading it, and I’m concentrating instead on how to detox afterwards. I found some lists of foods I can eat to help my kidneys — lemon juice in water, blueberries, cranberries, grapes, turmeric, watermelon, parsley, dandelion tea. I’m starting to work with my body now, so I’m prepped and ready for Wednesday.

No sense in worrying about it — I don’t have any kidney problems (my bloodwork has always come back looking good), so my strategy is to just beef up my system ahead of time, and take extra care afterwards. A lot of the foods I’m already eating, plus using baking soda (I put a1/2 teaspoon in a big glass of water and drink it most mornings). So, I have a plan.

The week after, I have a visit with a physiatrist, who was recommended so I can check out my neck problems, and the tingling and tics that’s been going on with my face and hands. I know I screwed up my C6 and C7 nerves over the winter — not enough regular exercise — too much irregular exercise. Plus, I’ve hurt my neck a bunch of times in car accidents and other falls. So, maybe they can figure some things out.  At least check me out and see if they can find anything out of the ordinary.

I need to collect some notes for them — descriptions of my symptoms, when they started, history of accidents, etc. I’ll give them an infographic. That will probably do the trick. That’s a good idea. Then I won’t have to explain everything in words.

Anyway, back to this report. According to my neuropsych, I made amazing progress over the time between the two assessments. Phenomenal. I would have to concur. A lot of it has had to do with keeping this blog, tracking my experiences, and also making lifestyle changes with diet and exercise. Now it will be interesting to see what they have to say — which they think is important for my neuro to know.

It will be interesting to see what they’re focused on.

Time to break out the report, cozy up to my cup of hot neurotoxins, and see what’s what.

More later

Onward.