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

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