So, I didn’t see the neurologist yesterday. I saw the nurse practitioner (LPN). My MRI looks good – no sign of structural issues on the imaging. So, what I gather is that there’s really nothing the neuro can do for me. I must be one of those “miserable minority” people who just needs coaching to make the necessary changes in their life.
I’ve got no diagnosis from them – just symptoms. And I’m ambivalent about dealing with the LPN. They’re nice enough, but they’re also a bit snarky, making cracks about my employer, who has a bad reputation in the region. And they move too fast. It’s wild – they don’t seem to get that folks with processing speed issues can’t always keep up with them. And they looked at me strangely, when I had questions or needed clarification or when I was writing down my notes. They also didn’t do a very good job of communicating the information clearly to me. It was very scatter-shot, and they didn’t cover everything that had gotten tested. My bloodwork, for instance, never got mentioned. And they were kind of all over the place.
Not this again.
I really think it has to do with the nature of their work. There’s a lot going on, and the neuro is splitting their time between that practice and another practice they’re opening several states away, so the LPN’s workload is probably pretty heavy. It could also be that they’ve got an attitude because they’re “just an LPN” and they don’t get the respect they feel they deserve. It could also be because they’re a “jock” and they have this whole athlete mystique thing going on.
Long story short, they aren’t the most dignified or professional sort, and that’s a little irritating to me.
But that’s fine, because it will keep me away from them. I have the info about my MRI (more or less) and I’m not in any danger. I’ve got this whole headache thing, as well as balance issues, but apparently sleep is the problem — I don’t get enough of it, and that screws everything up.
The other thing I need to work on, is this new neuropsych. They’re really nice, but they talk too fast, and I can’t actually absorb everything they’re saying to me. It’s like a non-stop barrage of ideas and concepts and questions and statements. Good grief. They really need to slow down. I’m a little out of sorts, this morning, after talking to the LPN and the neuropsych yesterday. It was a lot to take in, and I’m still kind of shaking my head, wondering “What just happened?”
Anyway, I’ll focus on my sleep, I’ll work on my balance, and I’ll use my noggin about things. This new neuropsych looks like they’re going to be pretty good. But I don’t need a snarky LPN with an attitude (and possible emotional issues) to confuse me — and gloss over the details I need to cover. I’ll continue to take care of a lot of things myself.
Anyway, it’s a new day, and I’ve got plenty to keep me busy. So, I’ll do that. And work on my sleep.
I got 7 hours last night, which is better than I’ve been doing, lately.
So, my new computer is working out great. It’s much faster than my old one, and the display is bigger. It’s got a 16:9 display ratio, which means I can create courses and do videos that will actually play for others. It’s also got a video camera. I tried it out the other day, but I’m not used to seeing myself on the screen, and I look very different on camera than I do in my reflection in the mirror. At least I have it, if I need it. The keyboard action is much nicer than my 10-year-old laptop. I love it when progress happens.
I’m also having a good time digging into some of the tools I can use, now that I have a computer that can handle the workload of modern apps. That extra power and hard drive space just makes everything so much better. And I’m able to experiment and mess around with different ideas, programs, and concepts, so I can expand my skills. I can fiddle around, try new and different things that stretch my brain and thought process, and I can do it all on my own time. There’s a lot of great new stuff happening out there with big data and everything you can do with it, and now I’ve got a place at the table.
That gives me a much greater sense of security in terms of my job prospects. Technology keeps shifting, and I need to keep up with it. So, now I am.
This is a huge development for me. In retrospect, I could have done it sooner. I could have been at this work, at least a few years back. But my brain wasn’t ready. I couldn’t quite piece together all the different steps of getting the new computer, moving things onto it, installing and configuring and what-not.
It was just too much for me, in the same way that cleaning the living room/storage room has been for a number of years. My spouse and I use the living room for a “warehouse” for their business-related supplies. They have a lot of props and tools and accessories they need for their work, and we need somewhere to put them. We have another family room at the other end of the house where we spend most of our time, so the living room has been repurposed for their work, as well as my workout equipment. It’s been increasingly chaotic in there, and neither of us has been able to get our arms around it to sort it all out. Last weekend, I took the bull by the horns and went through 3/4 of the room. The end result was a new storage area in a poorly used corner of the room, with about half the floor space opened up… and a couple of huge boxes of old supplies we don’t need, ready to be sorted (and probably pitched out).
Last weekend was a banner weekend. Saturday I set up the new laptop. Sunday, I cleaned the living room. A good start to the week.
And now I’m gathering up my stuff in advance of seeing the neuro and the neuropsych today. I’ve got my notes and my questions, as well as my MRI CD to look at. I’m a little nervous that the neuro will write me off, because I’m not debilitated enough. I’ve learned to live with a lot of this discomfort and pain and confusion. It’s not necessarily stopping me from living my life. But it is putting a crimp in things… and how much more could I accomplish, if I didn’t have to constantly deal with physical issues — headaches, pain, sensitivities — which increase my confusion and sense of disconnectedness.
The physical issues can be very isolating. They’re a huge drain, and just because I’m more functional than most, doesn’t mean I’m up to snuff relative to my own capabilities. I get that all the time — “Don’t be greedy. You should be happy with what you have – you’re better off than a lot of people.” I don’t dispute that. I am better off than a lot of folks. But compared to where I want to be, compare to where I could be… I have a long ways to go. And that’s where my focus is. I understand that medical folks need to focus on the people who are in the most dire need, and they see a lot of people who are in rougher shape than I. But my issues are blocking me from just living my life, and I can’t see why I shouldn’t have the best life possible.
Plus, the improvements in my life benefit others. Always. They benefit my spouse, my employer, my friends and family, and strangers I meet and help along the way (who always seem to pop up). Helping me to be the best person I can be, never ever stops at me. It’s not a “time/energy expense” for my medical providers — it’s an investment in the larger world.
It’s a kind of mission of mine — to really serve and assist others. It’s how I was raised. It’s the world I grew up in. Those who have more, must pass along what they have, that others can find the more that they have — and pass it along to others. I’m not talking about providing handouts to everyone, but offering the kind of assistance that others can take and run with, as they see fit, and as they can best do. I’m not doing it for them, I’m not living their lives for anyone else. But I will share what I’ve got, that others might take action as appropriate.
Not everyone is ready, willing, or able to take what I offer and do something with it — and I’m not in the business of just handing out charity left and right, just to go down a black hole of victimized helplessness. But for those who are willing to do something with themselves, I’ll be there for them.
That’s the whole point, from where I stand.
So, I need to make this clear to the neuro when I talk to them today. It’s not that I’m seeking attention or making things up so I can take up their time. I can’t do that whole “miserable minority” thing, where they treat you like a head case who just wants someone to spend time on them. That’s not my thing. I have the potential to be a high-functioning individual in many more ways than I am, right now, and I need to push the envelope to see what more is possible.
I just confirmed my neuro follow-up appointment for tomorrow. I had gotten a call from them on Saturday, confirming me for 10:20 a.m. tomorrow morning, but I could have sworn I made it for 2:20 p.m.
So, I called them back this morning, and yes, it is at 2:20 p.m.
2:20 on the 22nd of the month. Gotta play those numbers 🙂
Anyway, after that appointment I’m also meeting with my new neuropsych. I did a little research on them over the weekend, and it turns out that they’re about 15 years younger than I (they got their B.A. in 2001 – which is really hard to believe… but there it is). They’ve had their Ph.D. less than 10 years, and they’ve been primarily engaged in group practice work, in an academic lab, so this whole individual thing may be new to them. I know they have worked directly with a variety of different kinds of folks (and they did their obligatory VA training), so it will be interesting seeing how this goes.
I have high hopes.
In any case, it will be great to be getting back to seeing someone on Tuesday evenings. Neuro rehab is really the central organizing theme of my life — improving myself, better understanding my brain, organizing my thoughts, and also figuring out how to deal with my spouse as they decline… it’s all part of it. And it helps to have a working relationship with someone who is a professional — no personal strings attached, no implied reciprocity, no emotional entanglements… just someone to talk things through with, who has an expert outlook on it all.
So, I’m gathering my thoughts for tomorrow. I need to take my bloodwork numbers from the past years, so they have something to compare to, and I need to collect my questions about my MRI images.
There’s a lot there I’d like explained. And this neuro is the only person I know who can explain it for me.
So, tomorrow is a new day. Literally. And it feels pretty danged good to be starting something fresh.
DTI MRI – Diffuse Tensor Imaging that shows all the connections in your brain
My watershed week continues. It’s been a full week — I had to get my furnace serviced on Monday, because the pump that circulates the hot water through the registers was broken and overheating, which is why it was shutting down after running for a few minutes at a time.
Wednesday, I had another training to be a tour guide at a local park. We’ve got a few days allocated at work each year to donate to a cause of our choice — I chose some outdoor tour guide work at a place I love, which was also on the list for volunteering. It’s a significant step for me, because I have to study up on the park, its history, and all the wildlife and plant life there, so I can tell people about it. And then I’ll need to train with another seasoned tour guide, to learn the ropes and understand how best to talk with people.
I decided to do this because I need to get out and be more social with people, but I don’t do well in unstructured situations. I don’t always pick up on people’s social clues about when to talk — or when to stop — so it gets awkward. But if it’s in a structured setting, and there’s a time limit and I can follow a sort of “script”, I’m good.
Wednesday was the second of three trainings, and even though the weather was dicey, I still went, and I’m glad I did. It seems as though there are a number of folks exactly like me there — nature nerds who love to learn new things and share them with others.
Yesterday, I had my appointment with the new neurologist, and it went even better than I’d hoped. These folks are really on top of things — and even better, when we talked about the diagnostics and the imaging I’d had before, they didn’t even bother looking at the MRIs. Because for someone with my history of brain injury, they are not the right kind of MRIs. They told me that DTI is really the only way they can look at the actual connections in my brain — the axonal connections (signs of past shearing), as well as possible micro-bleeds.
I am so excited – it’s taking a monumental effort to resist typing this in all caps.
But I’ll resist, out of courtesy.
This is an incredible relief. Because it signals that these people actually understand what the hell is at the root of my issues. And they also know that a standard-issue MRI is not going to show them what they need to know. I will need to travel to the one facility in the extended area that has the equipment to do the DTI-MRI, but I’m more than willing to do that. Heck, I’d walk there, if need be. I had been hoping that something like this might happen for me. And in fact, I was thinking of getting the imaging done myself, while I still have good insurance, and then hiring a consulting doctor/radiologist to interpret the findings for me. I know of some resources for finding doctors/radiologists online who can interpret test results for you for a pretty low sum. At diagnose.me I paid $50 to have a radiologist from Vienna to take a look at my two prior MRIs and do a comparative analysis and tell me what they saw. So, I could cobble the steps together and use them again, if need be.
But now I don’t have to do that, and I actually have a very experienced neurologist (who specializes in sports) who will look at all the imaging themself and interpret the results for themself. Imagine that. Even though I had to take half a day off work and drive a ways through traffic and bad weather, it was well worth it. I’d do it all over again, in a heartbeat.
This DTI-MRI and the other tests I’ll be taking — for my autonomic nervous system function, as well as an EEG to check out how the electricity is flowing in my brain — might actually be my chance to figure out just what the hell is going on with me, and get past all the psychobabble that abounds. All the best guesses, based on personal observation and interpretation, make me nuts. (That’s the engineer in me talking.) I need hard data, numbers, actual images, to understand things — and so does everyone else. When you rely on human interpretation of signs and symptoms to assess someone’s difficulties, you open yourself up to way too much margin for error.
That’s one of my chief complaints with my neuropsych. Although they mean well, and they have some pretty amazing domain experience, and they have helped me tremendously, their interpretations of what’s going on with me have been an on-and-off source of aggravation. If they weren’t the only person I have regular access to, who is a highly educated professional who can talk at length about things other than politics, Game of Thrones, and Kardashians, I probably would have dropped them some time ago. But when I meet with them, I get to exercise my mind, as well as my brain, so it’s been very useful in that respect. They’re smart enough to know that I’ve done the lion’s share of my recovery, myself, so there’s no illusion about them having a Svengali-like hold on my poor little mind (as some therapists have fancied themselves). At the same time, though, their cultural biases really come through.
They interpret my experience along their own lines — as someone who grew up in a very secular, culturally homogeneous urban area, surrounded by professionals, and living a very entitled life. Whereas, my experience is that of growing up in both a racially mixed, working class urban area, and a deeply religious rural area where the optometrist, dentist, and doctor were the only professionals you ran into on a regular basis — and with them, maybe a handful of times a year. The conceptual gaps between our worlds are long, wide, and deep, but they don’t seem to realize it. And when I’ve tried to raise that as an issue, they flatly denied that it could play a role.
News flash – it does play a role. A huge one.
But that’s going to be changing in a month, because they’re leaving. And today, I’m meeting with their “replacement” — a neuropsych who comes highly recommended. This could be good, because this new NP is not from here. They’re an immigrant from Eastern Europe, and they don’t speak English as a first language. That’s good, because while they are highly educated and they teach at a university in a nearby state, they probably won’t take as much for granted, as my old neuropsych. I’ve lived overseas and also worked a lot with folks from other parts of the world, and I actually find it easier to talk to people who come from a different place and speak a different language.
When you don’t assume that you know, you pay attention more. When you realized that you could be misinterpreting what someone is saying, you listen more closely. It was like that when I was living in Europe, 30 years ago. And that’s how things were when I had to travel to Europe in my old job, 3 years back.
So, that third Big Event is happening today, and I’m pretty stoked about it. I’m also stoked about finding some very cool new reading — and that I actually can read it.
Five years ago, I had no confidence that this would ever be the case. I took what I could get, and I made the best of it. But this turn of events now is just huge for me. It’s like a new chapter is turning over in the book of my life.
What’s beneath can be much more compelling than what’s visible
Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.
That change can be temporary — the vast majority of concussions and mild TBIs resolve within several months. Or it can be lasting. With stroke, acceleration / deceleration injuries, or aneurisms, the recovery can be complicated, and 10-20% of concussions / mild TBIs actually do NOT resolve within a few months, but endure for many months… sometimes many years.
Persistent post-concussion symptoms are a problem that’s challenged healthcare providers for many decades. Once upon a time, it was believed that un-improving symptoms were purely related to litigation — after the lawsuit was won, it was assumed that complaints would clear up. But that proved to be an unreliable assumption, as health providers continued to see brain-injured folks show up, asking / demanding / begging for help… the kind of help that the providers frankly didn’t seem to be able to provide.
Then along came the assertion that post-concussive syndrome (PCS) symptoms were related to a history of mental health issues that simply got “re-triggered” by the mild TBI. It was claimed that the “miserable minority” of PCS sufferers were either A) grappling with unresolved traumas and psychic wounds that they never dealt with before and could no longer shut out, thanks to their injury, or B) they were regressing back to an earlier state prior to their successful resolution of those issues, and were experiencing a need that remained / seemed to be unmet.
Personally, I think that the emerging capacities of neuroimaging, as well as ongoing research connecting the dots between organic and psychological factors, will go a long way towards alleviating the pain and suffering. At last, we have a way to see into the “black box” of the brain. At last we have the ability — and interest — and funding — to connect the dots of this “Monet” of brain injury — everybody’s looking at it up close, and when you do that, it looks like an unholy mess… but step back and take it all in, and clear patterns begin to emerge.
But we have to look. And we need to have the ability to step back from our own little corners of the investigative, diagnostic, rehabilitative, and experiential world, and consider other possibilities. Some of those possibilities may fly in the face of what we have believed and promoted, lo these many years. Indeed, some of them might threaten our way of life, our reputations, our ability to make a living.
Those are existential threats — threats to our reputations, our livelihoods (and by extension, our lives) — so, not only do we need to be mindful when we’re discussing approaches that might put people out of a job. But perhaps even more importantly, we also need to be aware of how our own sense of threat/defense works against us our thought process, and puts us farther away from constructive solutions.
Ironically, the safer we play it, the more we run the risk of endangering our collective progress.
And of course, it’s not just academic, medical, or scientific progress that’s at stake. When it comes to concussive brain injury and enduring PCS, people’s lives are very much impacted by professionals’ inability to get their collective act together. That’s true for survivors, their immediate family, friends, employers, larger community, and our extended healthcare system.
Nobody is un-impacted by TBI. Nobody.
So, where does that leave us? Where does that place us, in the larger context of life?
When it comes to TBI / concussion recovery, I believe we will be well-served to look past the superficial professional approaches that emphasize psychological approaches. We need to look beyond the behavior, get out of our reactive cycles towards the way people behave and the meanings they appear to assign to their concussed experiences. We need to look deeper — into the biomechanical elements, as well as the functional ways that we respond and adapt to the concussive brain injury experience.
Telling someone, “You’re just not thinking about this right,” is of no help at all, when their brain structure has been literally altered by an impact.
Telling someone, “Don’t worry – it will pass,” when it seems to be taking forever for things to resolve (even if it’s “only” been a couple of weeks) is not encouraging.
We really need to deal with actual hard facts and data — what we logically and scientifically know about concussive brain injury, and what can be done to assist the situation. It’s not enough to tell someone to “rest and take it easy”. We also need to provide reasons why they should rest and take it easy, to recruit their willingness and make them part of the healing process. We have the data, the knowledge, the research-based information to get to the root of the issue – and explain it in simple terms to the people who need to know it.
Why don’t we use that information? Why don’t we just tell people what the deal is, and let them understand the root of their issues? Their brain has been jostled. Chemicals that used to be inside cells are now outside them. Their brain is having an energy crisis and needs time to settle down and repair. The more they rest and do certain things, the better their outcome is likely to be. That information is critical — and it’s actually been shown to prevent the development of PCS.
When it comes to concussive brain injury, we need to get out of our heads and look at the entire body — both literally and figuratively. The physical body. The body of literature and research. The body of community and professional support. We need to dispose of prejudices grounded in outmoded, decades-old neuropsychological mindsets which haven’t proved to alleviate the suffering they were created to address. We need to get real about the organic, biomechanical aspects of concussive brain injury and get beyond the limitations of DSM-driven diagnosis.
Despite Ruff et al.’s 1996 assertion that, in the cases they discuss, “resistance to recovery appears to have had its basis in unmet needs and trauma from early childhood”, I’d bet good money that
A) 9 times out of 10 in persistent PCS, we’re not talking about psychological resistance to recovery, and
B) all the focus on “unmet needs and trauma from childhood” has successfully blurred our vision of organic changes to the brain (and indeed, discouraged the quest to understand them).
I’d also bet good money that the vast majority of PCS sufferers actually want to be done with this shit and get on with their lives.
I know that’s true for me.
And I know that, until I quit all the navel-gazing people were encouraging, and started looking into the biomechanical and organic sources of my post-concussive symptoms, I was stuck in a self-perpetuating cycle of emotional lability and frustration and a fruitless search for help from people who could not help me. Only when I dug down to the physical roots of my issues and learned to see them as the products of physiological changes (which were made worse by my thinking about those changes), did I start to get hold of my symptoms and learn to actively manage them.
It’s my deepest hope that the same becomes true for many, many others.
Here are the vast majority of the unique terms in Ruff et al.’s 1996 “Miserable Minority” paper
I’ve been doing a lot of reading, lately, about the “Miserable Minority” – the roughly 10-15% of the concussed population who do not recover fully within 3 months of their injury.
I managed to get hold of a copy of the paper, and I’ve spent days reading and re-reading it, marking it up with my notes, and wondering about how to think about this.
Since I work with data on a daily basis, I decided to get some metrics around the words that are used in the “Miserable Minority” article. I copied all the text out of the paper, stripped out the citations, removed the headers and footers, then the text through a program I developed to grab the numbers of unique terms in the text.
I removed the “stopwords” — common words like “a”, “the”, “and”, etc — and I took out the numbers. Here are the top 20 most frequently used words in the paper:
Rank
Word
Frequency
1
her
123
2
in
114
3
she
88
4
with
71
5
was
60
6
for
49
7
had
46
8
mtbi
45
9
on
38
10
this
37
11
he
37
12
not
33
13
or
30
14
from
28
15
have
28
16
were
27
17
his
26
18
emotional
24
19
but
23
20
can
23
So, you can see there’s a pretty strong focus on the female aspect of it. And of course, there’s the emotional part, too.
All in all, there are over 1,800 unique terms used in the paper, which surprised me a little bit. I kind of expected some clear “winners” to come out, but the authors cover a lot of ground. But if you look at the larger picture (click the wordcloud image above – it will open in its own window) there is a strong emphasis on emotional symptoms and premorbid conditions.
That’s not surprising, since the paper pretty much boils down to the idea that while mild TBI / concussion is a widespread and problematic injury throughout the population, the brain injury itself is not to blame for symptoms that last more than 3 months. According to the paper, concussion issues should clear up within 12 weeks or so, and if they don’t, there’s something else going on — something pre-existing, like a rough childhood or a history of abuse.
According to the authors, mild TBI may trigger unresolved issues — or re-ignite formerly settled issues — thus causing the patient to mistake them for brain-injury-related issues. They admit that imaging is not yet sensitive enough to pick up microscopic damage. However, that was 1996. This is now. And 20 years later, we know from research that concussion does indeed cause structural changes to the brain. The damage is subtle. But it’s real. And repeat concussions result in cumulative damage which can produce significant deficits on down the line — whether due to yet another TBI (like the one I had in 2004), or organic changes that come with age.
This whole idea that enduring TBI symptoms are emotional and psychological in nature needs to be revisited. We simply know better now. And to persist in that old ideology serves neither the patient nor the provider, who may be struggling to understand why the patient is responding the way they are (or aren’t).
We know that concussion alters the brain. We know that the biochemical cascade that’s unleashed in the cells of an injured brain can have lasting consequences over time. We know that even a blow to the body can cause concussion, without the head ever being impacted. We know so much more about the mechanics of the process, than we did 20 years ago. So, why would psychologists and neuropsychologists persist in relying on outdated assumptions based on obsolete data?
They shouldn’t. They should change their “tack” with regard to assessing and treating mild traumatic brain injury in the PCS population. And that’s true for men, as well as women.
Perhaps most importantly, they need to change how they talk about PCS — and stop labeling us similar to malingerers and attention-seekers. Stop with that foolishness, already. Get your facts straight, and quit calling us names. If you can’t seem to help us, don’t assume it’s us — maybe you just aren’t taking the right approach, and you need more (and better) information.
While Googling “miserable minority”, I found a sign of positive progress. Result #3 at the top of the page is a December, 2014 article on the American Psychological Association’s website,”Women and mild TBI“, which makes some great points about how the designation of “miserable” and “minority” blurs the topic and puts the focus on psychological, rather than organic issues, thus missing the mark in terms of understanding the true nature of “mild” TBI.
Not only that, but that choice of words / approach runs the risk of sending
“the message that “this is all in your head” (pun intended). . . unintentionally foreclos[ing] scientific inquiry, driv[ing] persistently symptomatic patients away from the resources meant to proffer support (to them and their families), [and] reinforc[ing] ugly .. . stereotypes”
The article focuses only on women, but you could expand the reasoning to include men — and children — in the population of concussed folks. It’s a great read, and it comes from someone in the mainstream — a professional, no less, which gives me hope. Check it out — I think you’ll like it.
Brava to that. Clearly, there is a gender component to professional understanding and treatment of concussion/mild TBI. But only recently have researchers discovered significant differences in how men and women are brain injured and heal. It’s been a long time, coming, with countless individuals marginalized and stigmatized, simply because the folks who were treating them didn’t take them seriously.
Now that new imaging techniques are coming out and researchers are finding (and talking about) the fact that men and women may have very different experiences before, during, and after concussion, I’m hopeful that some of the really harmful materials that have steered (mis)treatment will be revised, with the harmful parts thrown out.
This isn’t isolated to women, either. PCS occurs with men, as well. And one of the dangers that comes along with a gendered focus, is that the men who suffer from prolonged symptoms may get lost in the shuffle. There’s so much activity — flurry-flurry-flurry — rush-rush-rush — around concussion, these days, that people seem to be racing towards conclusions without stopping to consider all the aspects.
Sure, it’s only human to do so, but what about the human cost?
Ultimately, it’s going to take a lot of rethinking, a lot of advocating, and a lot of promotion/publicity to get people to change course. There needs to be a compelling reason to do so, or professionals aren’t going to deviate from their preordained patterns. Even if it means they “risk coming up on the wrong side of history (again)” as the Gorgens article says, unless there’s an overwhelming body of proof — as well as incentive to go with it — providers are going to keep on keeping on their usual track.
Where that leaves us, I’m not sure.
I know there are some providers out there who are interested in learning more about how to better help the folks who continue to suffer with post-concussive issues. And I know there are some who are genuinely curious and good-hearted, who want to do the right thing. We just need more information out there about the cutting-edge research that’s being done, and some advocacy would help.
There are folks who are doing that, but they/we are few and far between.
Still and all, if we get the right information in to the right hands and provide the right motivation, who knows? We might just be able to move that needle in the right direction.
What’s beneath can be much more compelling than what’s visible
Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.
First the nurse practitioner, then perhaps the neurologist
Will wonders never cease… I have an appointment with a neurologist’s office in a little over three weeks.
And they look like a good one. They come very highly recommended by the neuro I was seeing before, and they also specialize in sports neurology and TBI. That’s exactly what I was hoping for, and I didn’t even specifically articulate it to the folks who have been helping me look around.
It’s important to me to work with someone who understands an athlete’s mentality, because that’s what I’ve always had — and I continue to. If anything, I’m more of an endurance athlete than I was when I was running cross-country and track in high school. Every day is an endurance test for me, and I have to keep myself fit, to keep on.
I have to see a nurse practitioner before I see the neurologist. This might be to make sure I’m not a malingerer or just looking for drugs. I’m sure they also want to identify exactly what the deal is with me, because TBI patients (and other patients as well) can be a challenge to “pin down” in terms of issues and treatable symptoms.
Sometimes people just want someone to talk to. That’s not me. I just want an expert to consult with me, using their professional experience to help me with the migraines, potentially the sensory issues, and most of all, help me stay upright — and keep from getting yet another brain injury from a fall.
At this point in my life, I’d just settle for the last one. I don’t like going the meds route with my migraines. I’ve found that cutting out the triggers of chocolate and too much coffee, as well as drinking enough water will keep them at bay. And while the sensory issues (especially touch being painful) is disruptive and is a strain on my marriage, I’ve been living with it for nearly 50 years, and it’s not posing an imminent danger to me. Falling is the biggest danger I’m dealing with, and it’s ongoing. I’ve nearly fallen down stairs a number of times, over the past couple of years, and I can’t afford to have that happen yet again. So let’s focus on that, why don’t we.
I’m pretty excited about the prospect of having a decent neurologist.
And now I have my next-steps:
Contact all the places where I had imaging done and get copies. Fortunately, they are in the same healthcare system as the hospital where I had my MRI and EEG in 2007, so they can probably just pull it up on their system. I also need to contact the hospital where I had my most recent MRI and neuro consult, and have them send me my records. Or, better yet, since their systems are pretty much a shambles, and I have no confidence that they’d be able to get my materials to me on time… I’ll just go pick them up.
My neuropsych is writing up an report on my issues and progress, as well as recommendations and warnings on any meds that might be prescribed. That’s important, because there are certain meds I cannot have, because they screw with the systems that have already been compromised by multiple brain injuries. Meclizine, which is a common medication prescribed for nausea and vertigo, has been prescribed to me by a PCP in the past — and it made me feel drugged. It was also recommended to me by an actual neurologist (who should know better considering my history of brain injury), but I told them I couldn’t have it. So, I had to save myself.
Collect my thoughts and narrow down my discussions to the main issues. Not allof them. The nurse practitioner I’m going to see will do an intake, first. I think I’m going to have to schedule a later appointment for the neuro, proper, but with the NP, I need to be clear and concise, as well. So, I’ll practice my spiel and make sure I don’t range too far afield. I’ll also practice not crying, because that tends to happen when people show me too much compassion. It happened at the last neuro, and I hate it. It makes me look like an emotional wreck, or someone who’s trying to get attention. I need people to stay objective and scientific, so I don’t lose my sh*t.
Lastly, and most importantly, I need to be realistic. I’m nobody to this neuro, really. I’m just another patient in a sea of faces, who is highly functional in many ways and less in need of help than probably most of the other people they see. I’m not one of these high-value patients — young, with their life ahead of them, and a bright, productive future on the horizon, if they can only resolve their neurological issues. I’m not a top-1% professional with a slew of letters after my name. I’m a 50-year-old techie who doesn’t want to fall down and get hurt again. Basically, I just don’t want to get hurt and end up destitute, homeless, or dependent on the system. If I fall again, that might end up happening. They have no reason to pay any special heed to me, and while a true professional can be expected to treat all patients with the same respect and regard, practically speaking, that doesn’t always happen, so I can’t let it get to me, if it doesn’t. Maybe they’ll be able to help me, maybe they won’t. I’ll stick with that one thing — not falling down — and not take up a lot of their time. And I’ll keep on with my life.
This whole diagnosis and treatment thing makes me nuts, if I think about it too much. It’s really hard for me to A) figure out exactly what the realissues are with me, and B) articulate them in a manner that has any meaning for doctors. I have an exhaustive (and exhausting) understanding of all my issues, as well as the subtle interconnections between each. But it’s hard for me to articulate it all and make it mean anything to a medical provider. The current medical system is inclined toward that degree of subtlety. There’s just no time. And if I let myself off the leash and just talk, I usually end up looking like a crazy OCD attention-seeker.
I’ve got to keep myself in check.
Of course, there’s always the danger that appearing “too functional” will work against me. They might just decide that I don’t have any issues at all, and I’m just wasting their time.
At the worst, I’ll just be back where I am now… figuring things out on my own, and piecing things together as best I can.
And that might not be such a bad thing, after all. Only time will tell.
This is what Thomas Kay, Ph.D. and Muriel Lezak, Ph.D. have to say:
Myth #4: The Lourdes Phenomenon
This is often a side effect of subscribing to Myth #1 (the Myth of “Recovery”). The reference is to the town in France (Lourdes) where miraculous cures of illness are reputed to take place. There are many families who firmly believe that some “miracle” will occur after brain injury and return their loved one to normalcy (recovery).
BB: Okay, first of all, let’s define “miracle” — is what people are expecting actually a “miracle” compared to what science/medicine imagines is true, or is it miraculous by everyday standards? I can see how a belief that some magical event will take place to bring a person back to how they were may be unrealistic and self-defeating. But at the same time, miracles happen every day, and medical reluctance to admit to really good things happening unexpectedly just makes it seem all the more miraculous. So by its very denial, medicine contributes to the belief in “miracles,” yet it’s apparently blind to this.
I’m going to rein myself in on this one, because as I discussed earlier in my response to Myth #1 (the Myth of “Recovery”), I categorically reject the idea that recovery is not possible for people with traumatic brain injury. First of all, the definition of “recovery” is far too limited, in the way it appears to be used by Lezak, et al., to really constitute real recovery. They seem to equate “recovery” with returning to exactly how you were before your injury. But “recovery” can mean a whole lot of different things, and in fact, I like to use the term in the same sense that my friends who are recovering addicts or alcoholics use it. It’s not about going back to how you were exactly before your injury. It’s about recovering your functionality, your dignity, your ability to cope and grow and change, to be a full person living a full life. Anyone who denies that to a TBI survivor is worse than cruel. They’re also a little dense, and not to be trusted with true recovery, as far as I’m concerned.
Belief in this myth often takes the form of “doctor hopping” or “program hunting.” Families will put the head injured person through every available program or with every available therapist. Despite any tangible signs of improvement, many will continue to believe that if only they could find the right person or right approach, everything would be better.
BB: Okay, let’s hold on just a moment, here. “Doctor hopping” or “program hunting”? How is it wrong to continuously seek out the best care possible for someone you love and care for? Referring in such a derisive manner to a person’s quest for quality care in the midst of a totally f’ed up medical system that can’t even agree on proper standards of diagnosis and care for TBI survivors, is not only pompous and self-serving, but also dangerously dismissive.
I could have been accused of “doctor hopping” prior to my diagnosis and rehab, because nobody I went to seemed to have a clue, and nobody seemed willing to actually help me — or even tell me exactly what was going on with me. They asked me about my mental/emotional health. They asked me about my relationship with my parents. They asked me when the last time was that I took drugs. They came up with snap diagnoses, from “Meniere’s disease,” to repressed childhood trauma, to not getting enough sleep, to playing music too loud. They asked me a few questions, came up with a quick answer, wrote me a prescription or gave me a specialist’s name, and sent me on my way. But could they stop and listen and take some time to actually consider the whole of my situation in a logical and considered manner? Nope. I guess I didn’t have enough billable conditions. Or they thought I was just looking for attention. Or drugs. Or they thought I was crazy. I stopped looking for help from doctors, when I realized that they were on track to have me put under psychiatric observation and shoot me up with pharmaceuticals to make me more manageable.
Of course it is true that often head injured patients make significant gains only when hooked up to a competent therapist or top notch program, but that is not what is meant by the myth. Families who believe in this myth cling to the most unrealistic expectations when it is evident to everyone but them that their loved one has limitations which are not going away.
BB: Really? “Only when hooked up to a competent therapist or top notch program”? It can happen that you can make significant gains if you’re connected with someone like that. But other people who do NOT get proper care do make gains. It can be tremendously difficult and painstaking and full of needless suffering, but there is such a thing as self-directed, even spontaneous recovery. The medical industry seems to have pretty much organized itself around denying that this can happen… and only when they start to lose money, and then figure out how they can “integrate their findings” with the very facts they dismissed before, do they start to get with the program. Of course, by then, it’s way too late for a lot of people.
It’s maddening.
One of the other things that’s maddening about this is that it’s been my experience that people need to have information to go on, and when they can’t get information from a doctor or other healthcare provider, they turn to other sources. Like their faith. Like the internet. Like someone they talked to who had stories of miracles. Like actual accounts of miracles. If anything, it seems to me that the medical establishment only encourages people to look to the fantastical sides of life, by not providing the information that people actually require to make logical connections of their own.
I do “get” that some families will cling to completely unrealistic hopes, and that must be frustrating for lots of rehab people. But how much of that is fed by reticent doctors and specialists who won’t actually talk to them about what they know and what the family can expect? Acknowledging that patients and their families are in fact human and deserve the respect and dignity of a real response to their situation could go a long way towards addressing the gaps that are filled in by the miraculous.
TBI is like a black box in medicine, and terribly few professionals actually seem willing to discuss it openly and frankly. It’s a combination of the medical system, I think, along with doctors just not knowing enough — or being sure of things that are flat-out wrong.
The solution lies not in finding the right “cure”, but in helping patients and families become aware of and accepting the limitations and developing new goals and expectations.
BB: As Charlie Brown would say, “Aaaauuuuuugggggghhhh!”
What he said
This just makes me crazy. “The solution lies in … ‘helping’ patients and families become aware of and accepting the limitations”? Dude, WTF?! Seriously. I mean, I get that we change after brain injury, but we change just when we live our lives. It’s simple human nature. None of us are the same from year to year, and we don’t talk about our changing personalities and priorities and abilities and goals in terms of “limitations”. Sure, there may be changes — sometimes extreme ones — but calling them all “limitations” is insulting and denies the truth of the whole of human experience.
And in any case, whatever happened to the whole neuroplasticity thing? Seriously folks, we come into this world blank slates who are formed and educated and shaped by the world, and our ability to grow and learn and change never goes away — unless we let it. We have so much more ability to learn and change and grow, than many of us expect or realize. And if we approach our recovery like we would approach re-raising a child (in this case, the kid is us), we may find ourselves encountering many of the same issues that we saw when we were younger. Now we’re older and a lot of our cluelessness makes no sense (to us as well as you) so it can be confounding. But folks, let’s think about this in terms of re-learning and re-teaching and not just give up.
Oh, no — never ever give up.
Thank heavens I didn’t give up on reading, three years ago, when I was having a hell of a time remembering what was paragraphs from one page to the next. Thank God I didn’t just quit reading altogether. I thought I was going to have to, but then I decided I was going to train myself to read again. I could do it before. I learned how to do it when I was a kid, so why not follow the same kind of process that I did when I was little, to teach myself again as an adult? Why the hell not? That’s what I did — I started out reading things that I may or may not have understood, but which were fun to scan and run my eyes across. Then I started reading adventure books — spy novels and such — because they held my attention. They didn’t always make sense, and I didn’t finish any that I started, but at least I got going a little bit. Then I “graduated” to other kinds of books about things that interested me – Samurais and zen masters. And I’m not back at a point where I can actually read an entire book. It’s taken me a few years, and it’s been very disheartening at times, but I did manage to do it.
Not being able to read was a pretty obvious hardship for me, years ago. But it was not a limitation that I was willing or able to accept, so I fixed it. And the thought that tons of TBI survivors can also be capable of re-learning necessary and needed behaviors, because it’s more “realistic” — it just makes my blood boil.
What a tremendous waste of human capability and potential. It’s heart-breaking. And the people who are promulgating this mindset are “experts” who are looked to by their peers and lots of other people for guidance, direction, etc.
Like Charlie Brown says, “Aaugh!”
Why shouldn’t we have miracles? Why shouldn’t we have hope? What gives anyone the right to steal away our hope? What gives anyone the right to kill our spirits, in the interest of “protecting” us? It makes no sense.
Unless… you consider that the people who are encouraging us to scale back our expectations are A) not very smart, outside of their chosen fields, B) not very experienced in life outside the laboratory, C) not willing to put in the work to help us recover, D) not able to bill insurance companies for the extended time it takes to help us, E) too accustomed to thinking inside their little boxes to consider alternatives, F) very invested in defending their positions because they’ve built a reputation on them, etc.
There are many reasons to cave into the pressure of seemingly insurmountable TBI difficulties. If the experts want to give up and go off and sip umbrella drinks on a beach instead of helping us, then let them. But they have no right to deprive us of our hope.
Screw ’em. I’ll design my own damn’ recovery, thank you very much.
And on that note, I’m off to continue my day. Time for lunch.
So, my new computer is working out great. It’s much faster than my old one, and the display is bigger. It’s got a 16:9 display ratio, which means I can create courses and do videos that will actually play for others. It’s also got a video camera. I tried it out the other day, but I’m not used to seeing myself on the screen, and I look very different on camera than I do in my reflection in the mirror. At least I have it, if I need it. The keyboard action is much nicer than my 10-year-old laptop. I love it when progress happens.
Broken Brain - Brilliant Mind 