Living with Epilepsy

I don't typically talk about epilepsy because people rarely like to hear about disorders or your problems in general.  Everyone has problems in their life and most likely everyone is either directly or indirectly impacted by a disorder of some kind. My wife, Wendy, has epilepsy and has had seizures off and on for most of her life since about 4th grade.  Her first seizure was on the first day of school after just moving to town.  Can you imagine what the kids in her classroom must have thought after seeing the new girl have a full on grand mal seizure in the middle of class?  Pretty crazy!

My daughter had symptoms of a minor form of epilepsy where she would have something called absence seizures.  Basically she would stare off into space for about 4-5 seconds and then come out of it.  I don't think anyone would even have known if it weren't for Drew and I being extra sensitive to the symptoms of epilepsy.  Fortunately, Olivia only had to take a low dosage of medication for about 2 years and just this past spring was able to completely drop her prescription!  Who-rah!

I wanted to write this post to give some insight as to my journey with this neurological disorder.  First off, if you've never seen a seizure in real life it's freakin' scary!  As I mentioned, Wendy has grand mal seizures which makes her entire body go very rigid and then shake violently.  To add to the cacophony of movement, she also emits a low guttural moan/shriek while her eyes bug out.  Lots of drama and lots of excitement.  The seizure typically lasts 2-3 minutes until, what I like to call, she has a "system reboot."  Her body finally becomes so exhausted from the over stimulation and lack of oxygen that the her brain has to relax.  If I'm around when she has a seizure, my role is to gently lay her down on her side (make sure her airway is clear) and make sure she can't hurt herself with all of the flailing.  There is a lot to pay attention to while you're trying to keep her somewhat steady and away from hard or sharp surfaces.  There have been times where she'll complain afterwards about a bruise on her forehead or something and I'll grin sheepishly, "Oops, I probably could have done a better job of holding your head.  Heh heh."

The one thing that both Wendy and I have always made sure is to not let epilepsy dictate our life.  Yes, it's a part of our life, but we do our best to manage it by minimizing the odds.  Lack of sleep and stress tend to increase the likelihood of a seizure, but they are still unpredictable.  Living life in a padded room is no way to live.  We try to make sure Wendy gets plenty of sleep; I do most of the driving; she commutes to work on a bicycle; etc.  Minimize the odds and do the best we can.

A new first for us was Wendy having a seizure with the kids present.  They were scared out of their minds, but I managed to stay calm and walk them through what was happening.  I gave them jobs to do to keep them busy and explained what I was doing and why I was doing it.  I honestly could not have asked for a better situation for them to witness a seizure.  Scary, yes, but also very safe and comfortable.

Olivia tends to internalize her feelings and will only discuss if you prod her.  Drew, on the other hand, had all sorts of questions.  He immediately wanted to learn more about epilepsy.  That's when I had the idea of maybe talking to an actual scientist who specializes in brain disorders (specifically epilepsy).  One of my good friends, Kris Winkler, works at the Allen Institute for Brain Science.  This is a non-profit organization which was created by the late Paul Allen (Microsoft co-founder).  The Allen Institute is located in South Lake Union just north of down town Seattle right around the Amazon.com campus.

Kris was nice enough to get me in touch with a Russian PhD scientist at the Institute to talk to Drew about epilepsy for an hour.  Drew's school allowed me to take him out of school early so we could drive down and meet with Anatoly (name of the scientist.)  It was an unbelievable experience for both Drew and I.  Anatoly broke down the concepts of what is going on in a person's brain during a seizure.  Basically there are two types of neurons within the brain that relay signals and commands to parts of the body.  Excitatory neurons do most of the work of passing along signals and commands while inhibitory neurons keep the excitatory neurons under control.  He used the analogy of a classroom full of children.  When the kids (excitatory neurons) start to get excited and loud, the teacher (inhibitory neurons) tells the children to settle down.  Epilepsy is when their aren't enough inhibitory neurons available through genetic defects to manage the excitatory neurons (too many kids in classroom for the teacher to handle or a bad substitute in for the day).

Anatoly showed us the lab where they actually run current through very small slivers of brain tissue in order to observe how the neurons react.  They actually experiment on both human and mouse tissue.  Brain tissue, under optimal conditions, can live for a few days without a body just as long as it is stimulated with oxygen and current!  Crazy!

If I could choose not to have epilepsy in my life I most definitely would.  Unfortunately, that's not my reality.  I like my son's approach.  If something is scary, take the time to learn more about it so you know how to manage it and, maybe just maybe, it becomes less scary.