Cogmed is over. I’m both really glad and kind of sad, for it’s been five weeks of something different that also makes me feel like I’m regenerating my brain in real time, not the usual let’s wait a couple or more months or years (or decades with traditional rest and strategies) and see if this will work. The usual takes patience and faith!
Leaping into Cogmed took faith too. But not as much patience. And interestingly, it gave me the ability to be patient with my fatigue.
Cogmed is like taking the toughest school test you’ve ever had when you’re at your most tired and trying to stay fully focused while being wise in timing your breaks the entire hour to one and a half hours it takes. First two or three weeks, fatigue got to me. The deep, deep desire to nap would overwhelm any sense and sensibility, and I’d rush through the rest of the exercise then lay my head down till my eyes would open and go on to the next exercise, repeat, until with a heaving sigh of relief, I’d be done. And could go watch an animation movie on Netflix.
But in the last ten or so sessions, I began to notice a change. I no longer absolutely had to sit and watch blankly an animation movie while inhaling chocolate right after my Cogmed session was over. I could maybe put laundry on then go watch any kind of movie. Even better, I began to be able to stick with my method of deep breathing, adjusting my vision to peripheral or eye tracking, focusing right to the very last try in the very last exercise. No more rushing just to get it over with and go watch a movie so I wouldn’t have to think any more. After about session 18, I became more methodical in my rest breaks, having noticed that too-short breaks resulted in not great performance but too long also didn’t work well. My coach mentioned in a couple of our early calls about staying in the rhythm of the exercise and not taking long breaks between tries. That’s difficult when fatigue is pulling down on your eyelids, making your hand jerk the mouse spastically leading to errant clicks, and your brain on an unconscious level is trying to reassert my old vision and narrow my new wider peripheral vision back to my old narrow focus.
So I focused hard on the task, put all my effort in to keeping my eyes open, and tried a quicker method of just taking a sip of water in between tries during the Rotating Wheel of Joy exercise. That worked. Then from Day 17 or 18 to Day 22, I expanded that method gradually to the grid exercises and then the number exercises. I had felt that methodical with breaks worked better for the latter; also the patterns of numbers bled from one try into the next if the break was too short.
But on Day 22, I went for it: I stayed in the rhythm of every exercise, at most sipped some ice water, only stretched my neck and shoulders to wake me up and stick my face in the feeble sunlight in between exercises and only rested for 10 minutes between the first set of four exercises and second set.
Unbelievably it worked! My daily index and Max Index both shot up.
It definitely wouldn’t have worked in weeks one and two, even in weeks three and four because I didn’t have the mental stamina.
Fatigue makes one hit the proverbial runner’s wall: you can’t see or think never mind remember anymore or remember so slowly it’s like watching molasses ooze down a glacier’s side as your memory finally comes into view so that you know what to click. You need confidence the memory will come into consciousness eventually and the patience to wait.
Somehow this intensive memory training has improved my stamina so that by the middle of the last eight sessions, I could stick to my method to the end, work quicker, and improve my performance — and all without my head hitting the desk in a dreadfully needed mini-nap time.
The number exercises are my absolute best ones. Grid ones and most movement ones are in between. My absolute worst are Twist and 3D Grid of Doom. My vision and eye tracking are the reason I do poorly. And too late I realized my depth perception being so new and my brain trying to shut it back down again is why I haven’t improved at all in the 3D Grid, the only one I haven’t improved even a little bit. Even Twist has improved a tiny bit — that’s with most of the time the patterns I’m holding in visual memory disappearing the moment the 4×4 grid twists back 90 degrees before I have to click the sequence I saw lit up.
Having tried Cogmed on both the iPad and the computer, I’d say that the computer with its bigger and thus more challenging display is better to work my peripheral field and eye tracking. I think working on the iPad helped me understand the exercise and train the eyes to know what to do. But after that, though much harder, the computer display is better at training peripheral vision and eye tracking and thus improving and retaining the improvements, like my head staying straight and my weak eye continuing to work with my stronger eye.
One of the best parts of Cogmed is that I had absolute control. The problem with brain injury rehab is that you depend on others to make it work. The person you depend on has all the control, even when they claim you’re trying to hold onto control (ie, when you demand, beg, ask for, fight for more help) and they claim being controlling is your issue. You’re screwed if they don’t feel like it, it’s not within their regular practice, it’s not how they operate, they only have time for some of what you need, they prefer to refer you to someone else — which entails waiting months or years never mind more hours in the waiting room because hey you don’t work anyway so your time ain’t worth much — they cut you off as you’re improving but before you’re stable. There’s nothing you can do but accept the inadequate help and hope you can live within brain injury hell under the cover of gratitude and a positive vibe without going insane.
But with Cogmed you have all the control. You do as well or as poorly as you want within the limits of your own neuroplasticity.
No one can let you down.
So rare, so empowering, so uplifting when you begin each session reminding yourself that this rehab is yours, all yours, and no one can let you down or undermine your efforts.
Improvements I’ve seen so far:
Reading speed quicker.
Reading length longer.
Short-term ie immediate recall of what I just read or someone read to me increased, richer depth of detail, quicker and for longer to speak it out.
Perhaps better long-term recall — this has been tested only once in a clinical setting. It was good.
Intonation of reading is up: I don’t read in a monotone anymore. I even put in a character’s tone in dialogue after Day 22 of Cogmed.
Walking is quicker; after 20 sessions, it’s normal in all areas I’m familiar with unless people suddenly rush past me or a group is wandering (how my brain perceives others walking) towards me. My eye surgeon advised me that the last part of my visual system to adapt will be motion:
Me moving while others and objects are also moving. Sometimes it feels like I’m on some psychotic tilting sidewalk trying to navigate people. Anywho . . .
Better stamina for cognitive work.
Starting to be confident of my cognitive skills because my memory of what I read is much more reliable.
My coach was sick so I have yet to have a final call with her. But the program told me that:
My working memory is up 57%.
My ability to follow instructions is up 24%.
And my math performance is up 1%.
Why is math barely improved when my affinity for numbers means those exercises just keep on going from one level to the next? Processing speed, peripheral vision, and fatigue. I can feel my neurons slowing down, the answers being held behind a viscous wall through which I’m pulling and pulling until they finally pop out while my peripheral vision narrows and narrows so I have to eye track every number in the equation and in the answers next to the arrow keys so that I know which key to press. And fatigue drags down my ability to keep at it. It’s the same issue I have when trying to calculate the tip on a restaurant bill for my mother. What I once could do in my head and rapidly too, now is arduous. After a year or so being completely unable to do it after my brain injury, I lost all confidence so that I wanted to avoid it. My mother’s math ability is worse than my injured one, so she won’t let me avoid it. Still, I usually throw out a guess instead of methodically doing it even in the last week of Cogmed. I guess patience through fatigue and slow processing hasn’t translated to math in the real world yet.
Cogmed and the ADD Centre say that improvements continue for the next six months. That’s why there’ll be a final assessment around June. Also, I will be taking the option of 100 maintenance mini sessions. I also have three regular sessions as make up ones for where I encountered technical snafus because of my hand jerking or finger double tapping on the iPad (the software should recognize and ignore tic-like double taps). They do warn tics can increase. And they did, but then in the last week, they decreased!
Whatever happens in my life, this accomplishment can’t be taken from me.