I’ve had a few reassessments. First, you do the IVA test, then after a rest, the TOVA test, then after another rest, the three-minute EEG assessment with the electrode in the CZ position (on the top of your head between the ears). But I’ve never done them like this before, with my brain deciding to take off on an improving jag. I felt like saying, “Hey! Wait up for me!”
I haven’t had a leap forward in healing in a very long time. It’s been gradual stuff, albeit accelerated since I began my gamma brainwave biofeedback in June/July, with perhaps a bit of a push from taking experimental controlled-release pregabalin earlier in the Spring, although the drug’s effects did wear off. And so it was a bit of a shock to be settling in to the familiar boring test and suddenly realising I was clicking the left mouse button an awful lot faster than I, the me of my mind, could keep up with. It was like when my speech used to speed up. I’d realise all of a sudden that my mouth was moving quicker than I could keep up with what I was saying. I’d have to force myself to stop talking so that “I” could catch up.
This is why sometimes I think mind and brain are not the same. If mind and brain were the same and brain is driving my faster speech, then mind being brain could keep up. But my conscious mind could not. The same with my assessment on 23 January 2013. My conscious mind could not keep up with my suddenly improved reaction time. I wanted to pause, but you can’t do that mid-test. So I panted along and lifted my finger a little bit off the mouse so that my mind could be in sync with my reaction time driving my finger movement. And I was absolutely convinced my test results were going to be worse because I was making errors due to my reaction time being faster than my mind. (BTW, this is not the same feeling as when something happens and you react quickly, with your mind lagging a little bit. That’s familiar to all of us, I would think. Here, there is a total disconnect and a feeling of being split in two: the function that’s healing in one part; you in the other, slower part. It’s true for rate of speech, thinking, feeling, and now for the first time in me, reaction time)
I told the trainer who was administering the test what had happened when she returned to the room after the test was over. And she looked at me like I was slightly nuts. I didn’t blame her. Unfortunately – or fortunately, depending on how you look at it – the same thing happened during the twenty-one-minute TOVA test. The TOVA is so boring, your head begins to swim, your body feels stressed, breathing becomes difficult, and after awhile you soon want to sleep – desperately. Still, my right thumb clicked the clicker clutched in my right hand like it was in a race or something. Again, I lifted my thumb off a bit from the clicker to try and keep up with my reaction time. Didn’t work. Turns out, my reaction time sped up even more.
“Remarkable!” was the reaction from Dr. Lynda Thompson when she saw the results. Yeah, I agree. It isn’t often healing happens in the middle of a test. I was so relieved when the tests were over, and not just for the usual reasons we clients all have.
So I guess that is what all that dizziness in the weeks previous to the test and the up-and-down nausea in the days before, were in aid of.
Since this is progress time, let’s talk improvements. There are a lot. And since they’ve happened in such a short period of time, people who know me in real life stare at me like I’m something out of a CGI film. So grab a cup of coffee and make yourself comfortable.
The first, most dramatic change Dr. Thompson saw in me was: “You’re spontaneous.” I think that’s because I began talking and just kept on going, instead of waiting for questions. I’m not sure. But tied to that was: animation. That others had commented on that before. And the third change that she remarked on a lot was: “You’re calm” I think when you have a brain injury and are in a state of confusion all the time, you’re a tad agitated trying to understand and keep up with the world around you. Also, feeling overwhelmed from sensory overload is also counter to being calm. Not being in that state of confusion and overwhelment means I’m not on edge, wondering what’s going on, what I’m thinking, what I’m feeling. But also I really believe the gamma brainwave biofeedback induces stress reduction. After a session, I would feel something that was impossible to deal with turn into something copable. After training, I would feel competent and much less stressed. Eventually, that effect lasted longer between sessions. I think that’s why I look calm and why my new animation is not of the manic type but the alive type, with an underlay of calmness.
My anger is much less. And negativity is reduced.
I don’t get overwhelmed anymore as if I can’t cope with something, and there’s too much coming at me. I felt very mildly overwhelmed during the last stressful weeks of 2012, but nothing like what I usually feel.
I’m animated. I don’t talk in a monotone or with flat affect. I did have prosody begin to return to my speech back in 2006, but animation was still lacking. Well, it’s back.
Each session produces an uplift in emotion. The amount of uplift has reduced as the treatment progressed because my baseline was rising. I don’t want to use the word “happy” because that, to me, is dangerous. I might be tempting the gods to swipe me again. Superstitious, I know. But there it is.
I don’t know if this is related to the uplift in emotion, but after biofeedback specifically for gamma brainwaves, I wake up. If I wasn’t talking much before, I will after. If I was talking before, I’ll be talking with more animation after. And even though biofeedback drains me (and over many months, if I don’t take a break, to the point of starting to retain water and feel hotter — sure signs of exhaustion whether doing too much mental or physical work), doing gamma brainwave training will actually give me back some energy. This can be dangerous in a way since I still must rest even though I don’t feel like I need to.
The number of hours I sleep per month has risen though it has become very erratic, swinging from five hours one night to well over eight another night, and I have no idea what kind of sleep I will have from night to night. The overall average per night has risen from 5.98 hours in June 2012 to 7.06 in February 2013.
The number of hours I read, write, and do writing-related work has shown some improvement, but it’s up and down. It will take a few more months to perceive if there is a permanent upward trend or not. And, of course, my exhaustion affects my hours, regardless of any functional improvement.
I’m apparently spontaneous, but that change is so new, it remains to be seen how that works itself out.
I walk and talk. This will need a bit of explaining. It is said that those with mild traumatic brain injury can walk or talk. That is their defining feature. Given the change in me , I’m not so sure that’s entirely accurate. Let’s say instead people with mild traumatic brain injury look like they can walk and talk.
This is how I used to walk:
OK Shireen, you’re heading to the subway station. Where are you going? Right. Down this street. Oops, you’re veering to the road, come back to centre. My right leg hurts. I know. Just keep moving forward: if you stop, you won’t start again for awhile, and you’re late. As usual. Move the legs, one, two, one two. Look up. Check the sidewalk for dog poop. You’re veering to the road, people will think you’re drunk. Come back to centre. Try to walk straight. You’re not walking straight! Pant, pant, pant. My chest hurts something fierce. I’m having a heart attack. You’ve had this feeling for a long time, it can’t be a permanent heart attack. I know. I still feel like I’m having a heart attack! You’re veering to the road! Look up! Where are you going? Oh right, to the subway station. God, I want to stop. But I gotta exercise, and I don’t have money for a cab, besides which, not sure I want to chance it. Are we there yet? No, and don’t slow down. Willpower those legs along. Don’t cross the road cause the light is green. You want to go the other way. But it’s green. Doesn’t matter, it’s the wrong direction. Move those legs, you gotta start again. Look to ensure some moron isn’t going to turn right into you. Move, move, move.
Who walks that way?! With constant self-talk to keep one going, to keep one on the sidewalk and not walking drunkenly to the right and onto the road, to go in the right direction? Well, people with brain injury do. And I got used to it. The problems diminished over time very gradually. My right leg stopped paining me. My chest no longer felt like it was going to kill me. The shortness of breath improved. And I stopped wandering as if I was drunk, for the most part. But I had completely forgotten what it was like to walk normally. Until January 23rd.
I walked to the subway station with an ease of movement and bearing that was simply amazing. I felt straighter; I was doing no self-talk. There was no cognitive effort whatsoever. It was automatic, like it is for every human being once they master walking. I cannot tell you what freedom that is. Simply glorious.
And this is how I talked:
What’s she saying? What do I want to say? I can’t remember. There was something I wanted to talk about. Watch the man sweep the blank cave of my mind. What’s she saying? Oh, I should respond to that. I wonder if he has a cold. I don’t want to get another cold! Yeah, respond. Is that a clock ticking? You gotta speak up to respond. Keeping your mouth closed doesn’t work. Speak, speak, speak. Oh, too late. The conversation has moved on. That clock’s ticking is getting louder, I swear. Focus! Right. Listen, listen, listen. That’s a gaudy coat. Go on, talk already. You know what to say now. Talk! Finally. But what was it I wanted to say? I’ll just keep talking till it pops out. Talk, talk, talk. Try not to see eyes glazing over. Hey, there it is. There’s what I wanted to say. I’m speaking it now. I’m tired. Focus! Right. I’m thirsty. Okay, I’m listening. That sounds interesting. I have nothing to say. The blank cave of my mind is empty. Cute dog. I want to interact. I got nothing. Watch the world pass by.
That improved over time too. I became much less distractible. The empty cave began to fill with ideas. But I still had to deliberately think of what to say before I knew I was meeting someone, yet half the time it didn’t matter. I’d still forget and rely on the other person to drive the entire conversation. And although not nearly as slow in processing, I’d still have to tell myself to respond when I had something to say. The effort of it all is taxing!
Then on January 17th, I realised I was conversing like a normal person. I was responding in real time; I wasn’t cheerleading myself to get me to open my mouth. I wasn’t thinking while I was talking because I was saying what I wanted to say, and I hadn’t forgotten. (No, this is not tip-of-the-tongue type forgetting. This is outright gone and feels very, very different. It’s like you can’t access an entire part of yourself for years.) I suppose that’s the spontaneous thing that Dr. Thompson observed. All I can say is, it’s fabulous. I hope that’s a permanent change.
Showering used to be so slow, I always ran out of hot water. I blamed the size of my hot water tank. No more! No more running out of hot water, no more blaming tank. I guess that’s what happens when you don’t have to think through absolutely everything – you can get things done faster, including showering.
My stamina and recovery have improved. I can do things for longer. And I find that some things no longer guarantee a four-day recovery time. However, neither is certain. In other words, sometimes I can continue on a task longer, even difficult ones like reading. But other times it’s like my old-usual. Recovery can occur overnight or take a few days like it used to, as well. But at least, neither is always like what it was.
The other aspect of stamina is fitness. I’ve slowly increased my exercise time up to half-an-hour four times per week with no adverse effects. I’m also walking longer – twenty minutes instead of five to ten at most – at least one day a week, and I can now walk up an escalator instead of having to stand on it. This may not seem momentous, but when you’ve been so limited for years and years, this is like a miracle.
The most remarkable aspect of gamma brainwave training is that I feel whole and no longer fragmented. Even though my various cognitive functions remain at different levels (eg, I can write better than I can read), I no longer feel like a fragmented jigsaw of them. I feel – whole. Coherent. And that has either given me greater competence and confidence or allowed me to feel that way (if you get the difference).
Other things I learnt from my assessment:
- You learn best when only one-third of what you’re reading is new.
- Practice sets new pathways, trains the brain.
- People read on average for twenty minutes.
- My reaction time increased during IVA and TOVA (kind of unusual) and is in 99th percentile for my age and gender, faster than a tennis player, though peaks are not as high
- The ADD Centre’s new cardiac software CardioPro will help with assessing the progress of my HRV work.
- PTSD and brain injury are hard to differentiate in an EEG reading of the brain but there is one US doc who can do it. Will look into it.
The nineteen-point EEG and evoke potentials testing was done at a separate time in early March, and I’ll report on those results later when they all come in.