Sunday, January 26, 2014

Concussion Story

This is just a summary of how I got to where I am, for those who asked after last week's post. So, I guess the blighted concussion posts continue. 

I’ve had 3 known concussions, clustered within 3 years in my mid-40’s. I say “known” because I’ve been in a number of car accidents, all wearing seat belts but also all taking jolts to the head. I’ve also been kicked a number of times in the head or chin at work in a psychiatric hospital, or thrown into a wall or onto the floor during a struggle, and have a child at home who’s a physical challenge to manage and has elbowed me in the head pretty hard. I’ve fallen on my back when I slipped on ice and bumped my head. I’ve played soccer, and softball, and tackle football with my family. I’ve felt “stunned” to
varying degrees by lots of these events, and though the skull is strong and the brain is resilient, you never know how all this adds up.

Still, something different occurred with these 3 events. The first was a slip on a wooden boat ramp in January five years ago where I was knocked unconscious briefly, or lost my memory for a few minutes. There’s no way to know. A guy was walking down the street with his black dog, and then they were next to me. I had a splitting headache and was a little unsteady but declined his help and walked home, about six blocks. Then I felt dazed, was nauseous, and decided I must have been coming down with the flu and that’s why I fell. 

The symptoms went away after a week or so but that spring I had difficulty “learning” new faces, at work, or even with my son’s staff at home. If I knew who you were before
Neuroscience for Kids
this fall, I still knew you, though I might struggle with your name. If I didn’t know you, and was introduced, I wouldn’t recognize you the next time I saw you as someone I’d met. It was scary, and I thought I might have Alzheimer’s, so I went to my doctor, who sent me to a neuropsychologist in August. 

By then is had resolved somewhat, and the testing didn’t show much—visual processing and visual memory were “relative weaknesses” for me but still in the normal range. I used to really great at linking names and faces, and knew all the staff at the hospital I worked with (about 400 people) and all of the kids. After this, I never knew “everyone” again but did well enough with the people I saw frequently. The feeling of complete bafflement was gone when someone seemed to know me and I didn’t think we’d ever met. I had a vague notion, and would bluff until it came to me. Lots of people are like this. It wasn’t much of a loss.

I didn’t link the weird facial thing to the fall until 18 months later, when I had my first immediately-diagnosed concussion after a kick to my eye at work that knocked me into the nurses’ station where I hit the back of my head. The same nausea/dazed/headache thing happened and I said to myself “oh, that’s what the boat ramp thing was.” I wandered around the unit until someone called a doctor. There was only one on campus and he was busy so I drove myself to the hospital, where they did a
from a post on 
quick CAT scan and said I didn't have a brain bleed but should get a ride home. 

There followed a few days of "brain rest" as recommended, and still I developed migraines, which I’d never had before and were debilitating for weeks. When they cleared, I found my speech was still affected. I couldn’t figure out what to say in response to people talking to me. It was a “cat got your tongue” existence for many more weeks, like I was thinking in slow motion, and speaking through water. 

Plus, the medication the doctor was prescribing to prevent the migraines (Topomax) can also slow thinking and speech. I stopped the med, the migraines came back, and the thinking and speech were still slow. I had trouble driving, and with balance, and was often dizzy. The nausea persisted for weeks this time, and I felt significantly “different.” Impaired. Weird. Overwhelmed. My attention span was shorter, and I couldn’t stand noise—like the television—or strong smells—like dinner—but these were common with migraines too. I had a consult with a neurologist who said there was no treatment that would help except limiting the migraine pain, so I focused on taking Maxalt early in the headache cycle rather than waiting until the headache was fierce. It seemed to help, and so after four months of recovery I went back to work, where I managed four inpatient psychiatric units and ninety or so staff. 

This was when it dawn on me that my life had changed. My brain was different.

I couldn't do my job. Not really. I could fake it. I could do pieces and parts, but pulling it all together was like reaching for a pea in on a spacewalk when you're wearing those big astronaut gloves. Even if you can within reach of the damn thing, you don't have the dexterity to pinch it. 

While cognitive issues are often not treated like medical problems--in terms of treatments they're psychological, or in their own category--when you go to a doctor, they ask about symptoms, and you rate them, and they write that down. I talked and thought about symptoms a lot, and felt proud of myself when something was getting better, like it was all up to me how fast I improved, and how much. 

But how you function in a challenging situation has nothing to do with symptoms, and instead has to do with overall brain functioning, speed, flexibility, the ability to do exactly what's needed in endlessly different combinations. 

Being “spacey” at home is nothing like being in a tense staff meeting with several staff arguing and trying to say something reasonable to get the situation under control; or a family therapy meeting with similar dynamics; or a supervision where a staff is upset and jumping around between topics and it’s hard to figure out what they’re trying to say and what you need to do; or a training for dozens of people who are starting to look at you oddly because of the pauses in your speech and your losing your train of thought, and having word-finding problems. 

Much, much scarier than the visual thing from the year before. And yet I knew what it
Dory is a goof, and a good stand-in for people with TBI's.
was, and assumed it would get better. It did. Not back to normal, but better. Most people couldn’t tell there was anything wrong. Those who knew me well could. Also, I knew my brain had become “fuzzy.” I’d been a very sharp thinker before, meaning fast, decisive, analytical, and perceptive. This “mental acuity" was gone much of the time. I was fatigued, and muddled. I sat at my desk staring blankly at my work, some days for hours. My productivity in writing reports went down. I couldn’t listen in a meeting for more than 20 minutes at a time before mentally checking out. We had conference calls that were murder because I couldn’t follow who was saying what. 

I looked for other jobs, but struggled in the interviews and didn’t get them. There were times I wasn’t sure I was making sense when I spoke. My personality was the same, but my confidence was gone. I started doing more trainings, because I believed in the initiative behind them (for trauma-informed care in psychiatric hospitals), but I wasn’t as creative at finding ways of teaching the concepts, and some of my presentations were disorganized—or boring—when they never had been before. The harder I tried to perform at work the way I had in the past, the more stressed out I became. 

Postconcussive Syndrome Awareness UK
My bosses were kind and understanding, but couldn’t easily change my job duties, and in some ways had to increase my responsibilities due to the loss of other staff. My being stressed out was something I could control, so I practiced mindfulness skills, and letting go of the super-accomplished person I was. I accepted that Superwoman had lost her cape and was firmly and permanently planted on the ground. This "letting go" helped, and I no longer worried as much about what I couldn’t do (or couldn’t do as well as before), feeling pride in other things. I was inordinately proud that I made every soccer game my kids were in, and every track meet. I read voraciously, and I wrote more, and while I couldn't organize a story well, I could still lose myself in a scene. I walked every day, swam and went to yoga several times a week. I planned vacations and loved them. My first granddaughter was born and I loved her. My kids and husband were all fine. Life went on. 

fairoaks carmichael patch
Two years and one month later, I was knocked to the floor again at work and hit the top of my head. The reasons why probably had to do with impaired judgment, though of course I didn’t understand this at the time. I drove myself home (see: impaired judgment) and locked away in a dark room for two days. On the third day, I got up, went to work, and found that I couldn't really talk. Scattered words, but not sentences, which is called aphasia. This "softened" into dyspraxia, which is stilted language, within a few weeks. Headaches, insomnia, nausea, dizziness, disorganization, memory problems, slowed thinking, oversensitivity to sound, light and smell--these were all worst in the first few weeks after the injury but only the nausea and dizziness fully went away. The sensitivity to sound is unbelievable. I can't watch TV, or movies, because the sound hurts and I can't usually follow what they're saying anyway. I live fully in the land of the fuzzy brain, where nothing is as sharp or clear as it was before and mental abilities that used to come unbidden can't even be dragged into view. 

I've had a neuropsych eval, an auditory processing eval, a cognitive eval, two neurological evals, a speech and language eval, and a psychiatric eval. The ones who hypothesize a reason for my inability to recover from this one say corpus callosum shearing but it's interesting--if that's true, there's also a rebuilding of abilities. Even after a year I still have little leaps of progress. Stimulants help clear the fog. Quiet can help me be productive. Not enough to go back to work, though. Not enough to function without a lot of help. 

Love, Lisa. 

Monday, January 20, 2014

Stimulants for Concussions, Part II

So I promised, and avoided, and now I need to cough it up. Concussion update (and follow-up part I, plus the blogs labeled "concussion series" to the right). I don't like this subject, but I've gotten a lot of private emails about it so this post is for those to whom it matters. And for Martin Luther King Day, I'm trying to go with a "Life Is A Beautiful Struggle" theme.

Reblogged from
I'm 20 months out from my third concussion and have had a weird kind of jump in my speech speed over the past month or two. I can't say it's due to speech therapy, because although that was recommended in July (in a report I received in October), it still hasn't been approved by insurance. It's not due to a medication change, because I've been on roughly the same dose of Adderall for more than the past year (20 mg at 9am, 10 mg at 2pm). It's also not due to any noticeable amount of quiet because Christmas break went on forever due to snow this year (aka 15 days). It just happened. I still halt and meander when I'm trying to make a point, but I'm speaking faster and clearer when I'm not trying to hard.

Of course, this is not always a good thing because I don't always make sense. I speak before I've thought through what I want to say, and I can almost see those I talk with girding themselves for a rambling treatise with a very unclear topic. Not the first human to do this, I know, but it's a different kind of frustrating. I almost want to shut up until I can say something meaningful and concise. But not quite. It's better than stuttering and stumbling around for words. Three months ago, if I couldn't think of the word for "island," say, I'd go "eyelet...isle...iamond...that thing? In a river? The land?" And feel very stupid.
from Amanda Patterson's blog

Now this is me, during yoga: "Oh, when we turn that way I can see Charles Island. Right in the middle of the window. Like a picture, or a frame, or a picture frame, or whatever, just in the middle. It's so...not spark...spar...sparse, yeah, like all empty you can almost see through it, like glass. Of course I am looking through glass (smile). But I like this spot here. By the window. When I turn."

Except we're supposed to be quiet in yoga, and this was never a problem for me, even before the concussions. My instructor's ready to tape my mouth closed. Everyone looks at me like "Um...Lisa? We're like...meditating?" But of course they don't say that because they're all being silent. 

This is how my recovery goes. I "trade up" problems. I still chug out intentional thoughts slowly, but unintentional thoughts are in some kind of babbling stage. Since everyone knows someone who talks like I do right now, they think it's normal. But it's not normal for me.

MIT Neuroscience OpenCourse
Yesterday I gave in and took my Adderall early, to save myself the humiliation of disrupting the class over and over. The number of students in the class has gone down recently and though I won't take all that on as my fault, there's a lot of eye avoidance, which there didn't used to be. The Adderall did help me stay focused, and quiet. I only had one (or two) little babbling things, one about the ligaments behind the knee and the other I seem to have blocked out but I remember the pinched faces. This was an improvement.

A year ago, I spoke slow and careful, like picking rocks to step on when crossing a stream. My brain was able to pick out the words I wanted to say but then jamming them through whatever channels led to speech took time. If I hadn't taken the Adderall, often nothing came out. I'd just shake my head and sigh. If I had, I'd get through it like I was typing on a typewriter, hunt and peck.

Now, it's the opposite. I still write much more coherently than I speak because I'm bypassing that speaking
CDC Facebook page Head's Up--brain injury awareness
logjam, using language without a time limit, and with the ability to edit. But the jam seems to have broken free, with floating bits of language spilling out in every direction. I met one of my daughters' boyfriend for the first time yesterday and I could see her itching to make the "cut" gesture across her throat before I even said a word. I don't blame her. Sometimes I have no idea what I'm going to say before it comes out.

In the end, I said a few empty or nonsensical things, but also carried on a reasonable but brief conversation about boats. If she hadn't told him anything about my oddities, he probably thought I was just nervous, or he was, so the conversation was a little strange.  If she had, he probably thought "that's not so bad."

Which is good. That's what I'm going for. I often convince myself when I'm alone in a quiet room that there's absolutely nothing wrong with me, I'm fully recovered, and I feel terribly guilty for not being back to work, or at least not fully running my household. Then I put myself in a situation that's more demanding, and one after another of my cognitive issues pop up like--okay...what's that thing where you push the button on a preschool toy and something pops up?, that's not it. More like that game where you bop things? Little critters? Mole rats? Yeah--whac-a-mole. Like that. Speech. Organization. Overstimulation. Anxiety.

Last weekend I went scrapbooking with my mother and cousin on the Cape. I should have known I was in trouble when it took me most of two days to organize last year's pictures and send 100 of them to be printed out at Walmart, but I thought this was a good start. I had pictures. There's no scrapbooking without them.

Our table, my daughter Sheyanne on the left, Mom on the right.
We hadn't gone to this place before, and I didn't know how the "crop" worked. It took me awhile (a few hours) to get my bearings and set-up, because I was disoriented. Very bright. Kind of loud. Used ear plugs, they hurt after a while, can't keep them in all day. Took a nap to try to clear mental fog. Tried to talk to cousin on one side and mother on other but it was so loud! And bright! Took paper out, took pictures out, moved them around and around, couldn't figure out how to position them right. Took an hour (yes, I kept looking around to see who was watching me as the timeframe stretched out) to figure out how to change the tape roll in my adhesive gun. Pulled out gum to help me focus. Took an extra Adderall. Watched the clock. Felt stupid. Moved more pictures. Stood. Sat. Smiled. Checked phone (I was anxious about my brother-in-law, who was very sick). Wandered through the store displays and bought a few things randomly. Got a few snacks. Looked at raffle prizes. Moved pictures again. Read through materials. Went to room and read my book for another twenty minutes. Took a shower and changed my clothes (hey! I can do something!). Came back in time for dinner, wasn't hungry (thanks Adderall, and terrible food). Had some coffee to help me
Cultivating Happiness blog
focus. Sat down again. Moved papers and pictures. Started gluing things randomly. Tore them off because--I'm not a perfectionist, trust me--but they looked terrible. Began to speak to those on my table (rather than just try to block out their voices). Told them I couldn't do a page. They said I could, it didn't matter how good it was. There was a 9pm raffle if you did a certain kind of page and I kept trying and trying to do it. 9pm passed and I almost cried, but I held it together because they hadn't called the raffle yet. They gave us another 30 minutes. I felt panicked, and finally forced myself to glue three things onto a page and bring it up for my raffle entry. The women organizers smiled, said it was fine, gave me my ticket, hole-punched my little card.

My God. Nine hours to glue two pictures and one little box of journaling on one page.

Nine hours.

Cultivating Happiness blog 
Not to brag (because it's really just sad) but I used to be a speed-scrapper. I did 3-4 pages an hour, usually about 50 in the course of a weekend. There's a gradient of scrapbookers, from "high quality" to "high quantity" and I was definitely on the numbers side, but the quality was fine. The pages were interesting, funky, and nothing really slowed me down except if I took a break to read or write. Not even sleep, these things go around the clock and my sleep is terrible so I loved the early morning hours especially, 4 or 5am onward, when it was quiet and peaceful and my creativity flowed.

Now my creativity is gone, at least visually. Last weekend's scrapbook pages were robotic. I finally found a way to make 2 pictures and one journalling box fit on the page in reasonable fashion and did the same thing over, and over, for two days. It was a breakthrough of sorts, because I haven't been able to do even one page in 20 months. Small victory, though. It's like figuring out how to make iced tea this summer. I mean, I did it, but how can you be proud of something like that? It's ridiculous. I still can't remember how to make a smoothie. A smoothie. And I refuse to look it up, because that'll make me feel even stupider. This is the rigid, illogical part of my brain talking. If I can't do it independently, I don't want to do it at all, thank you.

Adderall can't help with everything.

For the record, I've been doing some DIID therapy at home too. Even though I've promised to write about it, I haven't. I hate it just that much. It's auditory processing therapy and it's evil, albeit potentially very useful. So I'm not promising to write about it. But I might be forced to complain about it more specifically in the future.

In the meantime, I'm fine. Could be better. Could be worse. I'm seeing a psychiatrist, who would like me to accept that I have a traumatic brain injury, and is probably going to recommend more neuropsych testing, and that I give up my psychologist license. I'm seeing a neurologist who's all but given up on me because he doesn't understand why I haven't regained all my skills in this time. I swing between thinking I'm not that different from other people, and that I'm an idiot in the literal sense of the word. Maybe both.

I take care of my kids, do what I can manage in the house (i.e. planned meals, paperwork, laundry, rides, not money, not phone calls, not repairs or any kind of problem solving). I read, and I write.

I'm better. I'm just not "me." Not the me I remember. Not yet.
Love, Lisa