Mar 082016
 

Sorry about the slowness in getting this post out. CZ SMR retraining is going well. We’re retraining my brain at the top centre of it to produce more brainwaves at the 12–15Hz or SMR range. When you’re calm, relaxed and focused, that’s SMR at the CZ. We’ve done five sessions with two screens of (re)training. Next time, we’ll resume the regular three screens of training since I’m already starting to show the effects of improved SMR. We’ll reassess at ten and know for sure how it’s going.

I’m starting to look like and feel like my usual self (whatever usual is … maybe I should say not fractured, descending into what feels like insanity but I’m more settled, calmer, able to bounce back a little like I can). And so I may be able to tolerate the standard level of training again.

This is why you need good professionals doing the brain biofeedback, not some cookie cutter protocol where one size does not fit all, despite what some may tell you. When things go not so well, health care professionals with good experience and education in this technology can adjust your training and get you back on track.

Last week, I began to wonder if it would help with the new awful development: migraines on Saturdays. I had them three Saturdays in a row – gone by Sunday mornings – but this past Saturday they didn’t blossom. The migraines were not as vicious as the ones I had after my car crash on a Saturday in 2000 and suffered from up until two or three years ago, although they diminished in intensity and frequency over time. But they are a body memory – my body is remembering what it was like way back as I write about that time. Current circumstances are also bringing that time back into my consciousness as I fight both myself and my neurodoc to keep the memories all stuffed in some hidey hole. The problem with stuffing the traumatic stuff away (or in the early years having those neurons involved in emotions and communication hived off from my consciousness) is that eventually the door to the hidey hole can’t stay closed against the pressure of what wants to be let out. As it strains to keep closed, body memories pop up – a migraine here, a knot of pain out of the blue there – until finally it blasts open. That’s PTSD combined with brain injury for you.

My neurodoc has not been helping, with his insistence that only certain formats of communicating are allowed, meaning he doesn’t do email. I’m a writer. There are just some things I express better that way. I’d prefer BlackBerry Private Chat, but, hey even secure email is better than nothing, as long as it’s private, secure, read and read soon after I write it, meaning days not weeks later, but preferably within 24 hours. It’s way past time Canadian doctors became comfortable with digital communications and that medicare (OHIP in Ontario) covered the cost of phone calls, emails, text, chat, video, etc. Patients need it. And physicians should be compensated for their work, however it’s done. I persisted, and my neurodoc will read my emails weekly (or less) in order to keep track of my reading progress, partner with me in my overall health care (because no one else is!), and discuss with me anything I bring up. I need serious chocolate after dragging him partially into the 21st century!

Meanwhile, I am focusing on updating my book Concussion Is Brain Injury, crowdfunding it, and wishing mightily I could read as easily as I used to, trying to stay positive but exploding at the frustration of it all. I wrote a Twitter essay to vent it out:

1. So I began rewriting #Concussion Is #BrainInjury & at 1st, all went swimmingly cuz all new stuff. https://t.co/i9tLJlDVrX #crowdfunding

2. But then I began reading my original chapters of #Concussion Is #BrainInjury. Brain went Bwahaha! So I shrunk goal down to 1 section.

3. I tried to read my recovery-is-like-trucking metaphor. Words bounced off my forehead like opaque bouncing balls. #concussion #braininjury

4. I put my published ver of #Concussion Is #BrainInjury into @ScrivenerApp & was trying to read my metaphor scene on the computer. Brain=😳

5. Nothing so discouraging to a writer as not being able to READ YOUR OWN SHIT!! My health care team hv dragged their feet on #reading rehab

6. I brought up my reading at 1st appointment. Talked abt it ad nauseum. And I STILL HAVE TO NAG them all incl neurodoc. #concussion

7. They love my writing. Think it’s fab I write. But seem to be singularly blind to fact I NEED TO READ EASILY TO WRITE! #concussion #rehab

8. Once again I’m left to figure out how to read my own shit while they treat my #readingrehab as if slow lane is cool. #braininjury

9. I don’t know how they expect me to continue writing if I CAN’T READ MY OWN SHIT & THEY PUT READING REHAB AT BOTTOM PRIORITY! #concussion

10. So Amazon informed me I had to update my Kindle. I turned on PaperWhite for 1st time in 2+ years. Maybe was serendipitous. #concussion

11. As I’ve always said, it’s much easier to read on an eReader or iDevice than computer screen esp after #braininjury . #concussion

12. My book #Concussion Is #BrainInjury is already on my Kindle.Will try making font huge so my brain will absorb the words so I can rewrite

13. I wish I cld mk every single HCP’s brain turn to mush whn they try to read so they’ll FINALLY TREAT #readingrehab seriously. #concussion

14. It’s going to be awkward reading on my Kindle & rewriting in @ScrivenerApp on my PC. But I haz a job https://t.co/i9tLJlDVrX #concussion

15. I hope to hell it works cuz I have no other ideas, my neurodoc seems to hv forgotten this HUGE prob,& @ADDCentre hv to fix my regression

16. Can I just say I fucking hate #braininjury ? It gave me this book, but I still hate it. https://t.co/i9tLJlDVrX #concussion #reading

17. OK. End of rant.

18. OK, reading #Concussion Is #BrainInjury on Kindle & rewriting my scene in @ScrivenerApp Full Screen mode, works. https://t.co/i9tLJlDVrX

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