To my 24 new followers – welcome

Welcome, all! I'm glad you're here.

Welcome, all! I’m glad you’re here.

I have been looking at my WordPress stats, following up on who has recently followed this blog.

In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.

I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:

Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.

There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself ;)

Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.

I’m not afraid to fail. I just get a little tired of getting back up all the time.

But then, don’t we all…?

I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.

The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.

That happens all too seldom. But I hope it won’t happen here.

Joining us today from...

Joining us today from…

So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.

 

 

 

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

why is my brain injury causing me to not understand what people say on tv

Somebody found their way to this blog by searching for this, the other day.

I think that problems sequencing — getting things in order — can cause you to not understand what others are saying. The words get turned around, and they can sound jumbled up.

Also, being distractable can cause you to miss parts of what people are saying.

I don’t know if there’s one exact specific cause for this, but I can relate. Years ago, I was in an automobile accident that shook me up pretty badly — mostly physically. I got t-boned on the driver’s side by a traveling salesman who was late for an appointment. For days after that, I could not understand what people were saying to me. It really threw me off. All of a sudden, I couldn’t understand what people were saying to me. At all.

So, I quit the job I was at and decided to make a career of drinking. That didn’t sit right with my spouse at the time (we parted ways over 25 years ago). But it was fine with me.

Other times I’ve had trouble understanding people after other accidents, and I suspect that some of the times that my parents got the angriest at me, when I was a kid, was when I was actually struggling to understand what people were saying to me, but I was coming across as contrary and disobedient.

It really sucks, being punished for something you cannot control. Something that’s not your fault.

But it happens all the time.

Anyway, it’s been a long week. It’s time to relax and get ready for a long night’s sleep.

Good night.

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.

 

Mild TBI is anything *but* mild

I’ve been reading a free book I downloaded from The National Academies Press. Gulf War and Health: Volume 7: Long-Term Consequences of Traumatic Brain Injury

You can download it for free, after signing up with your email.

I found something interesting relating to discharges from the armed services.

Compared with the total discharge population, discharge due to alcohol or drug abuse was more frequent in those with moderate TBI (odds ratio [OR], 5.4; 95% confidence interval [CI], 1.7–16.9) and those with mild TBI (OR, 2.6; 95% CI, 1.6–4.3) but not in those with severe TBI. Discharge due to behavior was no different in those with moderate or severe TBI and 1.8 times greater in those with mild TBI (95% CI, 1.4–2.2). Discharge due to criminal conviction was 2.7 times higher in those with mild TBI (95% CI, 1.9–3.9) and no different in those with moderate or severe TBI. Discharge due to medical disability was 7.5 times higher in those with mild TBI (95% CI, 6.0–9.3), 25.2 times higher in those with moderate TBI (95% CI, 16.2–39.2), and 40.4 times higher in those with severe TBI (95% CI, 30.0–54.4). The authors note, however, that because the risk of medical discharge is directly related to the severity of the injury, these individuals may be receiving medical discharges rather than other types of discharges (such as behavioral). A limitation of the study is that it did not take into account pre-existing factors, such as aggressive tendencies or preinjury alcohol abuse, which may have played a role in discharge outcome.

Seems that mild TBI was part of the picture in higher rates of discharge for alcohol/drug abuse, behavior, criminal conviction, as well as medical issues.

Initially, a traumatic brain injury may seem mild, but long-term, it’s much more than that.

 

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.

To be truly free

That old Tom Petty song “Refugee” keeps running through my mind. And for good reason. Recently, a reader named Esai posted the following comment:

Just imagine if our blood was circulating at an even/constant pace through our body,
if your diet was correct and you had the ideal amount of vitamins and minerals your body would the do wonders, repairing damaged tissue, cancers, disease and even more important your BRAIN!. Im no scientist or a religious freak, there are no sinistral motives behind me saying this, i am confident in what i am saying because i know its true. any thing is possible when you put your mind to it.
if anyone should attempt any of what this forum suggests, do it for the right reasons, not just to slow your heart beat, do it to be free and do it to live! We live in a world where we are being controlled, Fun isnt it? They are continually controlling what we think and say, Why do we give them our freedom so easily?
we can control our own body! We control our thoughts! its so simple! Choose life not death, good not evil, positive and not negative.
i my self started controlling what i would think, i was then telling my body to heal itself, ya it didnt happen overnight but its happening, i would go into detail but too much to put in text, we all are the same inside and we all have the same freedom of life, take controll of it before its too late.

That’s powerful stuff, for sure. And it brings me back to myself. It reminds me of where my head has been, all along, over the years. Ever since I was a kid. Ever since I started getting concussions and could not fit in with others the way I had before.

One minute, I fit in, I had a good sense of who I was, and then it was broken into little pieces and taken from me. It was never easy, every single time. And even at a young age, it was very hard to take. Maybe even harder than when I was an adult, because my understanding of myself was still so fragile, and even the smallest change threw me into a crisis of confidence.

And it didn’t just happen once. It happened to me a number of times. I tend to think it should have gotten easier, each time it happened, but it didn’t. The initial shock was still there. The confusion, malaise, the pain of separation from myself and who I knew myself to be… it came back fresh, each time. After the fall down the stairs, after getting knocked out by that rock, after the football injuries, the soccer injuries, the rough-housing injuries, the fall out of the tree… then the car accidents, more falls, and that last fall in 2004. None of it was easy, and none of it made any sense.

Not until the past few years.

Now it does make sense. I understand the mechanisms behind it. I understand the logistics behind it. And I understand how I got from where I was… to where I am now — over and over again. I also understand how to get back from that place and find my footing, which is worth the world to me.

It gives me a real level of comfort, to know I’ve figured it out. So, if I ever get hurt again, I can have some level of confidence that I’ll understand the underlying pieces and be able to put at least some of them back together again.

So, onward.