CURE: Citizens United for Research in Epilepsy

Check out CURE: Citizens United for Research in Epilepsy. Looks like they provide grants for research on epilepsy. Nifty site too.

The SONIC Project

The The SONIC Project website has a nice animated diagram of how the brain works. Although it says Epilepsy on it, it really is just a primer on neurons and brain function. Very interesting, but a bit difficult to use.

Patron Saints of Epilepsy

If there are any Catholics out there looking to find the correct Patron Saint to which to pray about epilepsy in the hopes that they will interceed on your behalf with God, there are many from which you may choose. I got this list from the Catholic-Fourm: Alban of Mainz, Anthony the Abbott, Apollinaris, Balthasar, Bibiana, Catald, Christopher, Cornelius, Dymphna, Genesius, Gerard of Lunel, Giles, Guy of Anderlecht, John Chrysostom, John the Baptist, Valentine, Vitus, Willibrord.

The Catholics have eight-teen Patron Saints for epilepsy... pretty impressive. If you have epilepsy and are not religious, but are considering joining a church, you may want to take a good look at Catholocism. Consider this: Catholics have 18 patron saints of epilepsy. Whereas, if you combine all the patron saints of epilepsy for Lutherans, Baptists, Presberterians, and Methodists, you come up with a big fat Zero. Just something to think about...

Ok. Out of the big selection of saints, possibly the most famous of the bunch (at least to a protestant like myself) is Saint Valentine. Not sure if you want to take up a bunch of his time though. He has enough to do considering that he is the patron saint of Love and Greeting Card Manufactuers.



So if you are looking for a cool dude to which to pray, try out this guy: Saint Christopher, who also happens to be the patron saint of travelers. Interestingly enough, in the Orthodox Church, Saint Christopher is frequently depicted with a dog's head... Anyway, he should have plenty of spare time for people with epilepsy as his other patronages include stuff like: lorry drivers, fruit stand operators, and toothaches...

Feeling kinda blue..

Another MRI of my head. This is a slice down the center. You can see where the large blood vessels are at the top and the smaller ones go into the center. Supposedly the brain uses 20% of the blood in the body.

Memoirs of a Seizure

On second thought, a more appropriate title for this post might be NO Memoirs of a Seizure…

I was thinking back to what I remember from each time I have had a tonic-clonic seizure and it is pretty empty. I wonder if the brain is too occupied trying to deal with the extra electrical activity that it is unable to process input from the senses… or maybe it never transfers that information into long term memory (LTM). In any case, I usually remember what has happened from about 10 – 20 minutes before the seizure and from about 20 minutes after the seizure so at least a 30 minute chunck of time is simply not there.

One of the odd things about it is that I never believe that I have had a Tonic-Clonic / Grand-Mal seizure because I have no memory of them. I don’t know what one feels like, nor what I do during the seizure. I only have 2nd hand reports of the event.

So when I awake from a seizure and their is someone telling me about it, my mind can't grasp that as it has no memory... no memoirs of a seizure..

Tribute to Steve Erwin

I love taking photos of wildlife. Today I was watching a Crocodile Hunter marathon on Animal Planet and was inspired by Steve Irwin's face-to-face documentaries with wild creatures. I whipped out my camera and went hunting in my yard for something worthy... I was pleasantly surprised to find this spider hanging out in the bushes. Although it is not as exciting as a Saltwater Crocodile or Indian Cobra, the spider is about 3 inches long. Armed with only my camera, I leaned way into the bushes and got this shot.

Now, in honor of Steve, read the next paragraph in your best Austraian accent:

"I'm creeping into the bushes and find this GREAT spider! Look at the size of it's web - nearly 5 feet in diameter and check out the zig-zag center of the web where the spider waits for unlucky prey! Whoaaa... looks like I have startled her... watch as she shakes the web back in forth to try to scare me off... back up mate!"

Meeting With GSK & The Epilepsy Institute of NC

Christa and I met with two representatives from GlaxoSmithKlien (the makers of Lamictal) and with the finance adminsitrator at the Epilepsy Institute of NC. We basically laid out a plan for few awarness events that we wished to undertake and then asked them to fund it. It went very well - they approved our modest budget and seemed very excited to be involved. The Institute said that they would reimburse us for costs and the GSK reps are going to provide us with forms we can use to apply for grants from GSK. Christa and I are very excited!!!!

Brain On Fire!

This is what you can do with an MRI image and Photoshop! In this case, an MRI of my brain! I can only imagine that when I am having a tonic-clonic seizure, my brain might look like this...

Links: The Federal Review

Thanks much to The Federal Review for a link to Living With Epilepsy!

Their slogan is: Solving the world,s problems, one beer at a time! If you are interested in politics or are a beer connoisseur, take a look at their website. In addition to discussing world politics, they also discuss great beers. Although the combination is quite unique, perhaps the most stunning combination is their link to arch-enemies Daily Kos and Redstate on the same page! Bold indeed!

One of the contributors, Winston, over at the Federal Review has a son with epilepsy and he and I have been speaking about increasing awareness about epilepsy in North Carolina. I hope to meet him in person in a few weeks to discuss more about this.

Thanks again to the Winston & The Federal Review!

Long week...

It has been a long week with way too much to do. Christa has been busy coordinating efforts for the next planned awareness event at the Honey Bee Festival in Kernersville. We are excited about it, but still have a lot to do. I have been trying to work to get the Epielpsy Institute of NC website updated, but have not had a tremendous amount of luck in working with the developers. Evidently they close their office for the Friday before Labor Day... or in their case, Labor Days.

This weekend I am going to back post some more pictures of the Childrens Health Fair we attended. Feel free to drop back by...

Health Fair - Part I

We got our group together today and went to a health fair in Lexington. It went extremely well. The five of us distributed a wealth of information about epilepsy. We spoke with at least 200 people.

I think what surprised me the most was how many people either had someone in their immediate family or knew someone with epilepsy; a boss, friend, co-worker, student.. I was also surprised at how many people we met that had epilepsy. It was fantastic to share experinces with them and speak about different medicines and treatments avaiable.

We met a girl that had been diagnosed with epilepsy less than a year ago. She was a bit shy about speaking about it, but Christa was able to get her to open up and have a good conversation with her. It was a very hot day and she was worried about having a seizure. We were all glad that she didn't let this stop her from having a go at the climbing wall.

No Seizures...

Great News... it has been around 10 days since I have had any noticeable seizure events! I am thrilled.

On the flip side, it makes for awful blogging. No seizures... no real rush to get the word out about living with epilepsy. That should be changing though. Christa, I, and a few other people will be distributing information about epilepsy at a children's health fair in Lexington. We made flyers and got a number of other handout material for the event. I'll post pictures and details about it tommorow.

1st Support Group Meeting

Last night Christa and I held our first epilepsy support group meeting. We had 5 other people attend, which was great for a first meeting! The group came to the conclusion that our focus should be on education and awareness, and that through these efforts, people that needed support would be able to network with others of us in the group. So, during our monthly meetings, we would split in to groups along the lines of who ever was in attendance... I hope this will work well, we shall see!

Hand Out for Kids

This is a handout on epilepsy for kids. Nice work by Epilepsy.Com

Off Topic - Changed Template

As you can see, I changed my blog template again... Now I have to go through and modify it until it looks ugly again... at which point I will change the template again... uh... hmmm...

My seizures...

I frequently refrence my "small" seizures as being "partial-complex" ... This is not technically accurate. Mine don't really fit any of the convential categories. What might describes them best would be "aurors". They are an unexpected wave of sensation that interupts my thoughts and gives me a feeling like free-fall for the brain. Very strange stuff...

Keppra V. Sleep

Got home late last night. Did not take my meds until around 8... Although the Keppra I take seems to help with my seizures, it really keeps me awake. Did not fall asleep until 1 A.M. Although it does not make for a full night's rest, it does make for plenty of time to watch TV and play games. Currently, I am playing Civillization III. As for late night TV: The Daily Show and The Cobert Report.

Hot air and universal health care

The first part of this week wasn't too hot, hence my number of simple-partial seizures dropped to zero for 4 days in a row. However, yesterday was pretty hot, and while waiting a few minutes in the car with no air conditioning on, I had one simple-partial. No more seizures that day as I stayed inside.

Just a few moments ago, I had one while speaking briefly to my supervisor about medical insurance benefits offered by employers. It is something I am pretty opinionated about, and I had a simple-partial while expounding about universal health care. I guess my enthusiasm for the topic must have put a bit of stress on my brain...

The Monday blues...

Monday again. Back to work. Not too stressful so far today, so that is good. No simple-partial seizures either. Very good. Probably due to lowering of temperature around her... now down to the high 80s.

Friday not so good...

It was really hot yesterday, and I ended up having at least 6 simple-partial seizures near the end of the day. I called Christa to come pick me up in the case that I might have a grand mal seizure. We went home and I ended up sleeping 12 hrs straight. Feel much better now. No seizures so far today, so that is good. :)