A little embarrassed...

I was walking around the 3rd floor of my office doing inventory of computers when I saw one of the cubes had the name plate of a person that is normally on the 2nd floor. She was not there, so I asked one of her neighbors when she moved to 3? The lady said, "She has been up here for over 2 weeks. Don't you remember, you and Chet moved her equipment up here?" ... no I did not remember... that was the day of my seizure at work. Moving the lady was the last thing I did before I had my seizure. I was a bit embarrassed at the situation, but played it off like it was no big deal. It was kind of scary though... my memory used to be very very bad as opposed to just sub-standard. I hope to never get to that state again...

Off Topic - Stupid Blogger

Blogger is killing me today. I can't seem to upload any pictures! It keeps failing before the picture is loaded. Arrrggg!

Talking about Epilepsy

I've had to answer a lot of questions about epilepsy over the last week. Sometimes I feel comfortable talking about it... sometimes not so much. I'm not sure why. Obviously I'm willing to write about it in detail for over a year now... I think it has to do with having to admit weakness. It may sound silly, but it isn't always easy to acknowledge that you have a condition that renders you completely helpless at times. And maybe it is a bit embarrassing to have your co-workers find you in that situation... I deal with it and try to be a good role-model and spokesperson for people with epilepsy... It's just not always easy.

No more late nights...

Well, Dr. Dean said that it was important that I get more rest in order to avoid having more seizures. This simple solution is a bit harder to implement than might seem at first glance. First, I have been accustom over the last year or so to getting about 6-7 hours a sleep per night during the week. Now I am going to try for 8. This leaves me cutting out about 10 hours of stuff per week....My plan is to go to bed at 10 and get up at 6....

So what do I have to cut. Well, it means no more Daily Show at 11 P.M. and no more Colbert Report at 11:30 P.M. No more Countdown With Keith Oberman at 12:00 A.M. No more Missing at 10:00 P.M. and I got to hit the sack right after CSI goes off. Finally, I'll be missing the last hour of WWE: Monday Night Raw.

Solutions... well, I'm definitely going to have to make some adjustments so I can get in the important shows... So, I'm going to try to watch the Daily Show rerun and 1st run Countdown at 8:00 P.M. although I may miss a bit of each, I should definitely be able to catch any of Olbermann's excellent Special Comments, such as this one on Fearmongering or this one on Death of Habeus Corpus. Of course, if I can't watch the show, I can always catch the Special Comments clips on Crooks and Liars.

The most important thing is that I get more sleep. I really don't want any more seizures. This last one beat me up pretty bad. Glasses got smashed up along with my face. Ended up in the hospital for about 3.5 hours getting X-Rays... Not fun at all...

Seizure Recovery

It's been a couple of days since Scott's seizure. Scott had an EEG performed last Friday and we met with Dr. Dean that same day. Dr. Dean stated that Scott's tendency for having a seizure increases when he is tired or sleepy. She stated that Scott needs to get more and better quality sleep. So we stayed in all weekend and Scott rested. He returned to work today but has turned in early as he is still a bit tired. Hopefully, his new sleep schedule will reduce the chance of him having more tonic clonic seizures.

Thanks to everyone for your continued thoughts, prayers and support.
Christa

Tonic Clonic at the Office

Scott suffered a tonic clonic seizure at the office this evening. He was beat up pretty badly when he fell. We just returned home from the ER. He is a bit sore and sprained his neck during the seizure but did not suffer a concussion. The ER physician instructed Scott not to work tomorrow and instead to follow-up with Dr. Dean at the Epilepsy Institute. I will post more tomorrow to let everyone know how Scott is doing.

Christa

Dr. Apt.

Had my regular VNS apt with my Dr. Actually, I just saw Nurse Cindy who does the VNS interrogation. Everything checked out fine. I stayed with my same settings as the device seems to be working quite well! (thx Cyberonics!)

My current settings: .75 mAmps, 250 pulse width, 20 hz, 1.8 frequency/off time.

Long Time no Blog

To my loyal readers... sorry. Been busy with a multitude of other fun stuff... uh ... like work & stuff. Good news though! No seizures!

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.