When understanding keeps its distance

On the outside, not even looking in

One thing that has been a consistent problem with me for many years, is understanding what people are saying and being able to hold a reasonable conversation that I could then remember later. Yesterday someone found their way to this blog by searching for an answer to why their brain injury makes it hard for them to understand what’s happening on t.v.

I kind of glossed over it — I was tired and I was running out of steam. But now luka wrote something in the comments that really summed up a lot of things I was unable to think of or put into words, yesterday. His words are in bold.

This difficulty in trying to understand what people are saying has been one of the hardest things for me to handle. There came a time I wanted only to be in another culture, so I’d have an excuse for just not “getting it”. Now I’m with my roots and I feel their hidden disdain for my existence. And I’m not running. I’m too tired and too old now. They’re stuck with this smart, retarted man. And I will take to isolation more and more, but I won’t be out sight out mind. But communication at times baffles me much more than one could tell. Well, not sure if it’s denial or pride, but I think for the most part it has been an area that has bewildered me. It’s that it fluctuates some and in my compensation and extreme need to focus and to remember, I can, at times, be more aware than anyone about what is being communicated. The problem is that there is usually a lag time. And in mid flight I’m stuck on details and snippets in the conversation that makes me miss much meaning that gives life meaning to our social species.

I can relate to what he says on so many levels. The lag time when people are talking to me… feeling like I have to constantly scramble to keep up — either working overtime to stay engaged in the conversation, or simply recall what someone said to me a few minutes ago. A lot of the time, it’s gone — for good — and I have to make it up as I go along, but I don’t have the energy to keep track of everything, write it all down, and sort things out in my head. So, as often as not, I just go along and pretend I know what’s happening.

I struggled with this for a long time — feeling stupid, feeling retarded, feeling lame. And I tried to address it with my neuropsych, who has really helped me to figure out how to hold a conversation. Now I can converse with people and be witty and whatnot. The only thing is, I’m still lagging. I still have the processing delay. My most recent test results show that my speed of information processing has NOT improved in the past 8 years. I’m two standard deviations below what would be expected of me, given my overall intelligence.

So, I’m literally not making it up. It’s not something I’ve concocted in my head to feel badly about myself or come up with a reason to get pity. It’s a thing. It’s a real, genuine thing. And the fact that my neuropsych keeps downplaying my irritation with it, just adds to the difficulty.

So, I have effectively learned how to make do in conversations with my neuropsych. I’ve learned how to fake it even better than before. I can hold my own pretty well and conduct a conversation, and I am even comfortable now, saying, “I don’t understand — can you please repeat what you just said?” I never, ever did that before, because I was too busy trying to keep up to stop the conversation to get clear on something that was lost along the way.

It’s not genuine improvement — it’s functional improvement. That means to me, I can function better, I look better to other people, and I have better outcomes from interactions with people. But I’m still in the dark. I’m still struggling. I just don’t show it.

The most painful thing, is that my neuropsych flatly refuses to believe that I still struggle with this. They seem to believe that by telling myself I’m fully functional and can do anything I can put my mind to, I can achieve the world. Or at least a significant part of it. They can be very strange that way, like someone who’s bought into a whole Great American Mythology of Anything Is Possible If You Just Try Hard Enough.

I hate it when people who should know better, fall prey to their own mythology. My neuropsych believes (truly) that you can make yourself into whoever and whatever you want to be, and if your experience isn’t turning out how you’d like it, you just change your definition of what constitutes a good experience, and voila — you’re a success. I’ll spare you my rant on that. It’s just a distraction.

I’ve actually been trying to speed up my processing, I’ve been trying to work on my distractability, I’ve been trying to strengthen those areas where I have demonstrated problems. But years into my rehab, five of the six areas of significant difficulty remain unchanged.

At least, that’s how it was in 2013. I may have actually improved since then.

Anyway, yeah, there’s the whole thing about people seeing your innate intelligence and then not understanding why you’re so stupid at times… that’s all too familiar. The sidelong glances when you say something unexpected… the subtle (and not-so-subtle) hints… the teasing that has a nasty edge to it… I understand why people do that. It’s because it makes them uncomfortable, and it’s not consistent with their image of who you are and how you should be.

People are neurologically and biochemically invested in us being a certain way — it tells them how they should be around us, which stimulates certain neuro and biochemical pathways. How we are, makes others who they are. And when we are “not who they think we are” in predictable ways, it’s an existential threat. So, they feel endangered. And they lash out at us without even knowing it. We frighten them — Simply by being different from what they expect. And they feel the need to defend themselves and their understandings of who they themselves are.

But even if I understand why people are this way, I am so sick of it. I’ve been sick of it for over 40 years. I’m just about to turn 50, and I started having TBIs when I was 7 years old — probably even before that. Heck, I might have had an anoxic brain injury when my mother left me in the care of a neighbor kid who was “special” and put a clothespin on my nose to see what would happen. (I’m swearing in my head, but I won’t write what I’m thinking.) People have been really unkind to me for a long, long time, because of TBI-induced irregularities in my behavior and performance, and even to this day, the spotty nature of my abilities makes me absolutely nuts.

Luka continues:

Many people have told me that I had autism, but over the years, I am more convinced that it was the result of traumatic brain injuries. Some have said that they see it as absence siezures. And the psychologists see it as dissociation. People point to all that I accomplished in the world’s terms. As if it is proof I should see the last 25 years as a success. They point to pictures when I am smiling. And point out that I am “witty” and that wit takes intelligence. I feel dumb as I struggle to get around their idioms and block out sensory stimuli.

And in the past, I, too, was told I was on the Autistic spectrum — people who met me for the first time would actually tell me that it was okay if I was autistic. I didn’t need to be ashamed of it.

Huh.

For a while, I was under the impression I’m an “Aspie” with Asperger’s Syndrome. It’s not a stretch — many of my family really look like they’re on the spectrum, and I’ve got nephews who could be quickly taken for Aspies. After much research into the nature of Asperger’s Syndrome and autistic spectrum (AS) issues, I realize how much TBI folks have in common with them. Sensory issues are a major component of the AS, and they are certainly an issue for brain-injured folks. The ticks and the soothing and the behaviors that I exhibited in the past, when my sensory issues were unacknowledged and unaddressed (See The Deepest Day) were very much like autistic behavior.

But they stemmed from another source. Once I learned what that was, and how to address it, a lot of that resolved.

I also in private and on many nights, wish that I did not wake up December 1991. I see my life as a complete flop. All my dreams passed me by. They see me as having lived the good life and wasteing my God given talents. Just a squanderer who needed a kick in the ass. I see myself as someone who needed much patience and understanding and encouragement. But one who got that from a special few docs and friends and in the end my precious daughter knows truth of her father who so many told her was crap, but I can’t say people and docs didn’t try; many did but the end, they grew weary and the very best one, discarded me. And down deep I gave up the medical scene. Doctors’ offices are now triggers for ptsd. How sad given all they did do for me even if they diagnosed me wrong. I’m finally saying screw everyone who looks at me as a failure or a nut case. I’m taking a little empathy that I bring to others and going to start giving it to me. I’m 52 and shunned by many. Behind my invisible injuries, seen as con games or character flaws, is a person whose not just had dreams shattered twenty-five years ago, but stopped knowing what I had dreamt of. What constantly hurts me is that I almost pulled it off. At age 39, while on lamictal, I had started to see how far I’d come and started to have live dreams for me. I even learned what “love” in the romantic sense could be as I knew it before 1991. But in early 2000’s I had another brain injury and now I feel that it’s too little too late. And I don’t have much energy to pretend anymore.

Amen to that, for sure. All my dreams seem to have dissipated… though I’m still working on them and still have hope. I’m pretty bummed, though, that I’ve lost so many years to this injury — years I will never get back. Along the way, I have had some help from people who were genuinely compassionate. But one by one, they all lost patience with me. As though their compassion were conditional and intended to gently but firmly bring me through to the other side, where I would start living up to my true potential.

Yah. That was never going to happen. None of them knew sh*t about TBI, none of them knew sh*t about the brain. And a part of me says “screw them all” with a bitter sneer, because their compassion just turned out to be fake.

One after another… concussion after concussion, TBI after TBI… one bad choice after another. But I’m still here. So yeah, screw them.

But as disappointed I am with my life, I do think that I have a responsibility to use the compassion gained by losing my identity to siezure epileptus/coma state. Compassion and empathy are so desperately needed in these times. I cannot waste these byproducts of TBI and PTSD. Aside from the high level anxiety and depression, I feel very brave and strong in a way that I never gave myself credit for and with others yelling in my ear to “wake up” or “schizo” and me not even getting that, but knowing on some level I was the scorn of those around me. Maybe that is an added bonus of surviving, I know the truth and it is good enough for me. I will die knowing I did my best when they thought I was squandering. God bless.

And here is the key — the gold at the bottom of the bucket of mud — compassion and empathy and the ability to reach out to others and help. All the experts in the world are not going to make the world a better place, a more compassionate place, a better informed place. That can only happen through the efforts of everyone “on the ground” who is in the trenches of human experience, day in and day out. I, too, feel a responsibility to use the compassion I’ve gained — and yes, is so desperately needed. I can still contribute, in my “partial-ized” state… my many-times-fractured, many-times-healed state of mind and body.

I too have known what it’s like to have people yelling “wake up” and “crazy” in my ear — so loud, it was painful. People close to me, who were supposed to love me. People who were supposed to be my friends. And I also know what it’s like to not get that — it was just yelling to me, and it took me a little while to figure out what they were really saying, and why.

Yelling at someone who lives with a brain injury will literally not do any good (so why do people do it?).

In the end, it’s the truth that matters. The truth of our experience, the trust we have for ourselves. Finding the value in our difficulties, and offering a helping hand to others. These days, we have greater ability than ever before, to make a positive difference in the world, and even if we think we can’t — I can promise you that you really can. Every interaction we have with others gives us a chance to make a positive difference of some kind. It may only be inside our own heads. It may even be a “fabulous fake”. But so long as we don’t cause harm to others or ourselves, there is always a chance that our words and our work will matter in ways that we never fully understand.

And with that, I wish you a very happy Friday. Thank you luka for sharing what you wrote.

Be well, each and every one of you.

Onward

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

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.

Neuro visit notes – so I don’t forget

So cool… MRIs rock!

So, I had a visit with my new neurologist, and we had a lot to cover. We didn’t have enough time to cover everything — obviously. But I think we made a good start. If this is going to be an ongoing medical relationship, then there will be plenty of more opportunity to discuss and trade information and work out how to deal with the things that need dealing with.

And how to figure out which things actually need dealing with, versus just being annoying little irritations that are inconveniences, first and foremost.

I need to get off on the right foot. And now that my regular PCP is probably out of the picture — I was told they were out for a medical issue, a few months back, and now I got a call from their office telling me I need to reschedule the physical that was scheduled for tomorrow. So, I think they might be sick. They haven’t been happy at that practice for years, and I think it just caught up with them.

I really liked that doctor — at the start. They were personable and treated me like a real person. They got lax at the end and didn’t follow through with me on test results, but I still liked them. Then again, it’s probably been time for me to find another PCP for some time. I need someone who’s actually engaged and can deal with me for the person I am. I’m not sure how I’m going to manage this, because I live about an hour away from decent hospitals, so what am I supposed to do if I come down with something or I just need to see them about something?

But I’m getting sidetracked. Back to the neurologist.

I took a list of my biggest symptoms and explanations of how they affect me, what makes them better, the severity of them, etc. My neuropsychologist had sent them an 8-page report on my history and status, and I gave them an additional 6 pages of my own information. I don’t know what my neuropsych sent to them, because they haven’t yet sent me a copy of the report, but they promised to, so…

The neuro was pretty personable, and I talked about the issues I’ve been having — the headaches that are keeping me from exercising… neck problems… the tremors in my right hand and thumb… the twitching in my left cheek. The tremors and twitching are pretty clearly “essential tremor” which is triggered by fatigue and adrenaline — check… and check. I’m usually fatigued, and I’m often adrenalized, especially when I have to keep going from being so tired. The two go hand-in-hand, and now that I understand that, I can take that off my “worry list”.

We talked about my balance issues — dysautonomia, and how it might have something to do with it. I need to look that up. It’s about the autonomic nervous system being out of whack, thanks to — sometimes — a clunk on the head. Considering I’ve gotten a bunch of concussions, I wouldn’t be surprised.

The neuro seemed quite concerned about the dysautonomia thing, and they suggested some tests. I’m really not up for that, just yet. First, the MRI and seeing a physiatrist.

So yeah, another MRI is in order. They want to check the nerves in my neck and cerebellum, as I recall (I think). They took a quick look at my imaging from 2009 (I took the CD with me and they reviewed it — with gusto), and they said my brain looks great(!). With the new headache issues emerging just within the past 18 months or so, they want to have another look.

And there’s that pineal cyst that nobody thinks is a big deal at all, but is worth checking on. As I recall, the size of it is not huge, but it’s also not tiny — it’s 4mm I think (I’ll have to check that), which is the size where people start to take notice. Originally I was told to have an MRI every 2 years to take a look at it and see if anything has changed. Getting contrast agent pumped into me every couple of years is not my idea of a good time — it makes me sick for a few days afterwards — and considering that 40% of the population is walking around with them, I really don’t feel the need to get tested that often.

But it will be interesting to see how my brain is doing, these days.

It will be really interesting to compare to my MRI from 7 years ago, and see how things are going. Maybe things are changing. I’m pretty sure they are. I suspect there’s a lot that’s changed for the better, actually. 2009 was near the beginning of my active recovery, and I’ve made incredible progress since then, so I’d like to see if there’s been a physical change to my brain — in gray matter or white matter or anything else. Then again, maybe nothing has changed. Or maybe things have gotten worse. Whatever. Whether or not it shows in the MRI, my life has improved dramatically.

I will probably get MRIs every 7-10 years for the rest of my life (perhaps more frequently as I age), just to see how things are going “up there”. I have a pineal cyst, so I don’t need to argue with folks or come up with some fancy reason for justification. The neurologist who ordered the MRI in 2009 told me to get imaged every 2 years, so there it is.

Anyway, we also talked about x-rays — looking at my back and neck. I’ve been in a bunch of car accidents and falls where I hurt my neck, so who knows what the heck is going on with me?

We talked about the sensitivities, too… just a little bit, because there was a ton of material to cover. Something about light and noise sensitivities being connected with … something I can’t remember. Maybe balance issues? That’s something I’d like to know more about, from a medical standpoint. I do know that I get better — less sensitive — when I am well-rested (which is seldom, actually). But I’d like to know the underlying mechanisms that contribute to it, so I can take some constructive action.

It’s all about constructive action. I haven’t gotten a lot of medical help in my life.  Either the doctors have been idiots, or I haven’t done a good job of communicating. In the absence of competent medical help, I’ve just been going along with my life, living as best I can. I really needed help from a neuropsych to jumpstart my recovery, and having them to talk to each week has been a significant help. But I wonder if I really need their help in a neuropsychological capacity. It’s more for the sake of having someone to talk to who is just able to have a focused conversation with me without getting all weirded out by my tics and odd behavior.

People can be so unimaginative.

I’ll need to write more about my visit, so I don’t forget. I had a good recap with my neuropsych yesterday, and it’s going to be another week and a half, till we talk again, but that’s the best I can do for my scheduling.

I also need to write this down to recap for myself and get clear on my goals for care. I need to communicate to the neuro that I’m a “lifehacker” who first learns about the root causes of conditions and then crafts a personal approach to them that works for me and enables me to maintain a sense of autonomy and independence. If we end up working together over the long run, I need to level-set up front with expectations and such. Or that may not happen for the long run, because my great insurance will change at the end of this year, and I don’t know if I’ll be able to get adequate coverage to continue with either my neuropsych or neuro or both. So, I don’t have a lot of time to waste. Gotta make the most of it now, while I can.

Well, the day is waiting, and it’s time to get moving.

Onward.

#Mobilgeddon works for me

See? The web world did not end.

So, a week ago on April 21, Google released an update to its search algorithm that gives a boost to mobile-friendly pages in their results.

At first, web mavens reacted with dire warnings, as though the end of the world were nigh. Some said over 40% of top websites could get dinged and lose visibility. Yet, over a week later, the collective response has turned into more of a shrug (sorta like Y2K), with people either realizing that they’re doing okay, or they set out to make additional changes that they really should have made, anyway.

For me, I think the results have been favorable. Already, on April 22, the day after, my page views went from numbers that hovered in the mid-200 views per day, to over 300 views per day.

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Overall page views – before and after “Mobilegeddon” – click the image to see it full-size

It’s still early, but I’ve seen a 20-35% increase in daily page views that inexplicably happened, starting after 4/21.

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Overall page views – the day after “Mobilegeddon” – click the image to see it full-size

And on top of that, it seems that WordPress may have made some changes on their side, because a week later, three days in a row, I had a sizeable boost in traffic – close to 400 views per day. From me doing nothing different from my usual posting – if anything, I’ve been posting less, because I’ve been so danged busy.

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Overall page views – the week after “Mobilegeddon” – click the image to see it full-size

So, what does this tell me?

First, WordPress is on top of things.

Despite all their “interesting” choices for how to render their sites that just get in the way for people who aren’t 24 years old with a Mac and a broadband connection, they still manage to keep the platform running. It’s reliable, and considering everything that could go wrong, they do a decent job of keeping up. The fact that my stats jumped another 50 views/day as a result of me doing absolutely nothing different from usual, tells me something happened behind the scenes. It had to be WordPress updates. 50 views a day is not a lot by big-business standards, but it’s 1/5 of my usual 250-views-per-day traffic. I’ll take that 20% boost, thank you very much.

Second, my “content strategy” is working the way I want it to.

I’m just a solitary individual seeking to educate others about concussion / mild traumatic brain injury and provide support to those who suffer from persistent symptoms by sharing my own challenges and successes. I don’t have an editorial calendar, and I don’t do a ton of keyword research and write my content to be super-Google-friendly. I just write what is in my heart and head, and do my best to provide something of value. Considering that I’ve had over 382,000 total views on this site since around 2008, that seems to be getting some notice — and hopefully filling a need.

Third, when it comes to optimizing for a machine, your best friend can be another machine.

That’s what Google is — a machine. It does what it does with an algorithm (a magic formula of logic), and it does it automatically millions, if not billions, of times a day (or hour? or minute?) It “speaks its own language”, and it looks for web pages to be consistently formatted in ways it understands — work which is best done with a platform like WordPress, Drupal, Joomla, or some other templated content management system.

Back in the day when I was building web pages by hand, there were very few reliable content management systems available. The ones that were on the market, just sucked. I know, because I evaluated a bunch of them for an employer. None of them were worth the price their inventors were asking. So, you had a vast sea of “creatively” built web pages filling the web — not always by people who knew how to code properly or organize their pages in a way that made sense to anyone them.  Especially not Google.

But nowadays, there are so many content management systems out there, and there is so much need for consistency of design and reliability for all the devices and search engine requirements, it only makes sense to use a content management system like WordPress (or the others I mentioned above).

That goes especially for the hosted versions (like this one), which is continually updated and kept spiffy by the folks behind the scenes. If you know what you’re doing and can keep your WP instance up to snuff with all the continual updates, database backups, etc., then good on ya. But if you’re a solitary blogger trying to get the word out about your ideas, educate others, and provide something valuable that will help others, and you don’t have time to spare to maintain your infrastructure, website platforms that others build and maintain can go a long way towards helping you.

So, “Mobilegeddon” didn’t ding me. If anything, it appears to have helped. So did WordPress, I believe. And that makes it possible for me to help even more people — I hope.

Onward.

Routine and Habit – what helps you recover from TBI / PCS

When you’re recovering from mild TBI or post-concussion syndrome (PCS), having to reinvent the wheel for simple tasks is Enemy #1.

Having to re-think everything that you do, every hour of the day, is a killer. It sucks up critical mental cycles that could be used for other things, and it fills your brain with sludge from exertion. It turns you in to that Sisyphus, that mythical guy who pushed the rock up the hill each day, only to have it roll back down.

If you can create a daily/weekly routine to follow that gets you where you need to go on a regular basis, you can get on autopilot and make some real progress

That’s one of the things that’s been doing a number on me, lately – being off my routine. Starting new things and having to really rethink a lot of assumptions about how I can live my life.

Freedom is a lot closer to me, than I realized.

There’s change in the air. It’s exciting. And with that excitement comes additional work and stress. And I have additional things to do with myself that I need to create a new set of habits for.

So, I’ll do exactly that.

More to come.

Onward.

Knowing when to get out

Gotta know when to make a run for it

I can’t believe it’s Sunday, already. Seems like it was just last Tuesday.

I’ve been pretty tired, over the past week – lots going on. Plus, I’m working out in the mornings again, so that’s making me more tired, on top of everything else that’s going on.

So, I need to factor that in, whenever I go about my business and interact with others. I need to track where and when I’m doing not-so-well, and take steps to correct my situation, when I see/feel myself going awry.

Like this morning. I got to bed late, last night, because I lost track of time in the evening and I had to run out and buy supper late. So, we ate late. And we watched a movie that kept me up till midnight. And true to form, I woke up at 6 a.m. — so, I’m operating on 6 hours of sleep.

Not great. I’m feeling sick, and when I got started this morning, I made the mistake of getting into an extended discussion with my spouse about things that need to be done. I only wanted to make a cup of coffee before I went out on my morning walk. But within minutes, we were both sparring, and the conversation rapidly spiraled downhill, with my spouse perseverating, accusing me of perseverating, followed with angry accusations from them, and finally petulant tears.

I didn’t help matters any, by finding fault. And in the end, I managed to get out for my morning walk and work off the aggravation.

Lesson learned. When I am over-tired and not feeling well, I need to just excuse myself and get out of an angry conversation as soon as humanly possible.

It’s the only way. My spouse has their own neurological issues, which they cannot seem to see, and when we are both tired — like at 6:00 a.m.– and I’m trying to get out of the house for my walk, while they are trying to get me to spend some time with them, it’s a volatile situation that’s just no good.

The crescendo develops in a few predictable ways.

First, I am tired, and when I am tired, I am more irritable.

I’m more likely to get tweaked over every little thing. Something as minor as the sun peeking up over the hill behind my house can set me off… let alone getting sidetracked from my activities by my needy spouse. Plus, when I’m tired, it’s hard for me to think and I am less coordinated, so that irritates me all the more.

Second, to wake myself up, I often use anger.

I discovered this little “trick” about 20 years ago, when I had to get up at 4:00 each morning to drive my spouse to work. I would drop them off and then head over to my job… and as I was driving, I’d start to nod off. I discovered that if I made myself angry about things, it woke me up. And it did it quite effectively. So, I have been doing that for many years, and while it’s effective, it’s also a bad habit I need to break.

Third, my spouse loves to wrangle when they are tired, too.

So, the two of us can rapidly escalate to the same-old-same-old nagging and grousing we’ve been doing for years. When I was 10 years younger, it didn’t bother me as much. But now, it’s just a pain in my ass. And a total waste of time.

And I know better.

So, I need to do better. I got myself out of the house without indulging in more drama. I didn’t go back and try to smooth things over, when the tears of frustration started to flow. I just walked away, because I’ve been pulled into that many, many times. It’s just my spouse’s way of trying to pull me back in, and it never ends up well — for me, anyway. They’ll be fine. They’re just worked up, and they need some time away from me. Just like all the other times, we’ll reconverge later in the day, and things will be fine. I’m not getting into it, just getting on with the day.

I’ll take a quick nap around noon to recharge — and another one later in the afternoon. That will keep me going.

And I’m not going to engage. Because I don’t feel well, I’m fatigued, I’m behind on my sleep, and I still have a lot to do before the next week starts.

Lessons learned — yet again.

ONward.

 

Work makes it worth it

Time to dig in

Time to dig in

I’ve been going-going-going for the past five days, and today is another going-going-going day. I’ve got a lot to fit into my hours, and nothing will wait. It’s just one of those times.

I feel like I’m coming down with a bit of a cold, so I have to take care of myself. I’ve been around a lot of different types of people, over the past days, and some of them have been sick – as in, sneezing-hacking-coughing sick.

No fun.

Also, at the height of the craziness over the weekend, I forgot to take my vitamins, so I can’t imagine that helped. I usually take Vitamin D, B-Complex, B-12, Calcium-Magnesium (it combines well with the D), and Vitamin E. But for several days, I didn’t take them. And on top of that, I ate food that I know I’m allergic to, which did not help. I usually get sick when I eat dairy, and although it’s been a few days since I had that cheese pizza (which was an incredibly bad idea) I’m still feeling the effects.

Anyway, I’ve got a lot going on these days – including my upcoming neurologist appointment on Tuesday May 5. I finally got an appointment. I need to gather my notes about my symptoms to discuss. It’s hard to know which ones matter, and which ones don’t, and I’m not sure how much detail to give. I’ll pull together high points to review, and discuss from there, I guess.

I have never had much success with doctors before. The neurologists I saw in the past were almost deliberately difficult, as though I was suspect from the start. I present well, and nobody really can tell how much difficulty I’m having, so I’ve gotten to the point of not even bothering to try to explain myself or communicate what I’m experiencing to others.

The one exception to this is with my writing. I guess I’ve  just been doing it so long, that I’m able to get more across in the written word. At least, it feels that way to me. Too bad my doctors don’t/won’t read what I have to say. There’s a lot of nuance in my situation, a lot of fluidly, shifting conditions that come and go and aren’t easily controlled with a pill or a shot. It’s subtle and it’s confusing and it changes without warning, at times.

So, what good can modern medicine / healthcare – so hurried, so oversimplified, so formula-driven – possibly do me? … Well, imaging, for one. A doctor can order a scan that will speak volumes about my situation — will it kill me, or won’t it? … But beyond that,

Talking things through with a doctor — including my neuropsych — is another story. The words just don’t get through. Which worries me and puts me on edge about this upcoming appointment in about 2 weeks. Is anything that I say going to make sense? And are they going to believe me, when I tell them what my experience is like? Will they dismiss me, like so many others? Will my time with them be wasted… and the whole thing turns into another “diagnostic adventure” that quickly devolves to a medical boondoggle?

Well, whatever happens, the bottom line is, it’s not the end of the world. If it turns out to be not-so-helpful, I’ll just walk away and get on with my life and find other ways to handle things. I have bigger issues to deal with, besides medical ones.

The main one being Work. It’s quite the roller-coaster at work, these days, with tons of uncertainty. But my Work is keeping me grounded and sane. The projects I have going are really shaping up nicely, and it’s keeping me engaged on a level I need to be engaged.

I had gotten really bogged down in other people’s “stuff” at work, but this past week has shown me that I don’t need to get stuck in what bothers them. What gets my imagination going and keeps my spirits up, is what I should be “stuck” in. Focusing on the Work I do, for its own sake, is really liberating. When I focus on doing my tasks at work, as though they are part of my own business, and as though they are taking me towards something bigger and better, it makes it all tolerable. The difficulties I go through are training for later — because sure as anything, there’s no way my life is going to get a whole lot simpler, any time soon.

So, I might as well get used to handling all the excitement.

Anyway, that’s the thought for the day — Work, in and of itself, is what truly gets me going, and it’s there that I can (and will) keep my focus today.

Onward.