So it’s been a while and I apologize for that my fellow avmers. I recently bought myself my Bioness L300, since my insurance did not want to cover it because I wasn’t a spine patient… (brain patient here) but anyways that certainly left a whole in my pocket) and also got the nustep (which I have worked on in therapy) in hopes of doing it more of the from home and that pushing me forward faster in my recovery. Fingers crossed!! I also recently submitted ADA accommodation paperwork to my job and hopefully that goes through perfectly since my neurologist did advocate for me that due to my epilepsy I cannot just randomly do my deployment on TDY to a random location like I had signed on my contract because my seizures were out of wack just a month ago, without any actual change (they just decided to happen back to back for 2 days out of the blue without any actual trigger) it is scary being a survivor sometimes to say the least. Besides that I am holding tight and still going strong in hopes of a better version of me post avm. Hope all of you are doing well
Thanks for the update Teiry, and great to hear from you! I sure hope the accommodation works out, and I have no doubt your positive outlook, positive spirit and forward looking personality will be incredibly beneficial in the process! Employers look at far more than the actual ability/disability piece and are significantly more receptive to positive people in the workplace. Best wishes to you! Take Care, John.
Hiya Teiry, I always love stumbling across you, especially when there’s no really bad news, except the money…
As far as epilepsy, you’re telling Noah about the flood. The scar tissue left from 2 craniotomies has given me 50 years of gran mal seizures. I’ve been through the gamut of meds, had some really bad reactions and I’m on Lamotragine now. It controls pretty well but I’m worried because this last year I had a few daytime seizures. They used to all be at night in the REM sleep cycle. I’ve been banged up really bad but I’m okay.
As far as “triggers,” the only things I’ve been able to find are sleep disruptions like jet lag and just being “down” on energy/spirits, even from a cold. My neurologist did prescribe a drug to take prior to flying and I think it works. Be well, Greg
Seizures are just a science of their own once we think we’re used to them and triggers and what not, BAM they’re out of control again. I am happy to say they have been behaving for now
thank you Greg it’s nice to know im not alone on this.