Tuesday, June 16, 2009

Epilepsy 101: Let's Learn Some Crap


So, as I journey down the Epilepsy Highway, looking for all the knowledge and info I can possibly absorb on one of mankind's greatest enemies, I figured I'd share some stuff I have come across.

For my IS Brothers and Sisters, this is all probably old news.

To those in my 'other world', could be new for you. I know, I know...you'd rather me show you my latest Mighty Mugg or Kubrick, or finally talk about the new stuff I am working on. But I'll always go back to that, right now this is what I'm about. You never know, someone close to you could have some form of Epilepsy and you would not even know it.

Rumor has it that 50,000,000 people living on this globe have some form of it. Sadly, along with the disorder also comes a social stigma and so some people afflicted don't even talk about it.


So you never know...I didn't actually. Two people, wait three, whom I know actually have or have had epilepsy of some kind and I never knew.

Wild, ain't it?

Anyway, let's get educated, shall we? Pulled this off of YouTube, though it originates from the Epilepsy Therapy Project, a non-profit organization. I'm going to, little by little, expose you, whether you care or not, to info about Epilepsy.

Why? Because this is my blog, natch!

Let's start with some basic information about seizures...



Thanks for watching. As I watch these, I am wondering if in the entire series they will discuss Infantile Spasms specifically? Probably not. It's my understanding that Epilepsy has so many sub types it would be impossible to cover all of them in overview videos like this.

And remember, Epilepsy, from what I understand, is a transient sign and/or symptom of abnormal, excessive or synchronous neuronal activity in the brain, which is caused by SOMETHING. The key...is finding out the cause, and in many cases, you CAN'T.

That's just fucked up, there is no nice way to put it.

8 comments:

  1. I think it's good and valuable to educate us on this. First, it helps those of us "others" understand a tiny bit more what you guys are going through. And second, it may help one of us understand what someone in our future is going through.

    This happened to me about five years ago. A cube-mate of mine, whom I had sat next to for four years, suddenly began acting very different. His motions got jerky, he said stuff that made no sense - I thought he was having something seriously life threatening. He left to his car and said he was going home, which worried me.

    It turned out he had epilepsy and was too embarrassed to tell me. I told him I understood but my biggest concern was his health and safety - he had nothing to worry about from me. He taught me what I should do in the future if it happened again to keep him from hurting himself or embarrassing himself.

    That was my first exposure to epilepsy (that I know of) and I was something like 38 or 39 at the time. I wished I had been a little more knowledgeable of it back then, but I knew nothing!

    Through your writings, if I ever meet or come across another family with an IS child, I hope to be more supportive, more understanding and more of a "being there" type friend.

    ReplyDelete
  2. The trouble with IS...is that it's not the sexy-controllable-my-best-friend-in-high-school-had-seizures-too type of epilepsy. Not that I'm bitter 'bout that mind you...

    Love the idea to educate...may even link it. But only if you promise to add one a those little cussing calculators. Just for (my personal...cause for some reason it makes me laugh) funsies.

    ...danielle

    ReplyDelete
  3. No need to find a pretty way to say it because there is absolutely NOTHING pretty or nice about Infantile Spasms.Nothing.Education helps.I wish it were enough.I never want others to truly "get it" because that would mean that they would have to live it.That their child would have to live it.My wish is that no child or family had to endure.My wish is that you and yours would find your way out of it.Soon.

    ReplyDelete
  4. wait so it's NOT caused by supernatural forces?? :p

    Cool vid and I love education...you don't have to apologize for posting about it at all, dude!

    ReplyDelete
  5. Phil:
    GREAT story. Thanks for sharing it, it really helps bring home some of what I was hoping to illustrate.

    Danielle:
    Would do the cussing calculator if there was one that was Blogger compatible. But I searched the whole damn Internet and shit I couldn't find a fucking thing. :P

    Heather:
    Thanks. Maybe we should all start a re-naming campaign.

    Stryder:
    Actually it's caused by a gerbil in one of those little exercise wheel. No wait, that's inside my TV.

    ReplyDelete
  6. ok blogzilly, i've been reading your comments since sweet sophie headed to detroit. brandon is my cousin. i live 250 miles away from them in kansas. your little guy & his big bro are so cute! IS is such a Horrible thing!! but Elaine & Sophie & family are making it! I can tell you, as a family member that only saw Sweet Sophie a couple times a year, it WAS devastating YET the hope Miss Elaine ALWAYS showed was AMAZING!!! AMAZING! and I guess what I want to stress is that you have found the right spot to keep the faith! no doubt you all will go through the stages of grieving!!!
    this is SO NOT FAIR!!!!
    your little guy has the best advocates he could poossibly have!!
    just find any peace in the fact that you are doing ALL you can for him!
    i will be checking in...lurking...hoping...praying

    ReplyDelete
  7. Brandon's Cousin:
    Thanks, I appreciate you reading and taking the time to post a comment.
    I think maybe I have lived in too many places. I've lived in St. Louis, where they are from, lived in Kansas too. Went to Leawood South Middle School.

    ReplyDelete
  8. I have watched this very same series...I think this is a good one for "the others" to see....It provides as simple an explanation as possible...

    I am catching up on my reading tonight...I feel like I've been out of touch forever!

    I don't want to miss ANYTHING!!!

    PS: Don't tell anybody, but this rather old-fashioned southern middle aged chick throws an F-Bomb under her breath almost EVERY time Colby has a seizure!!!

    Cyndi

    ReplyDelete