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. :)

Medicow

I found this little jem of a search site. It filters out your searhes to just medical information. So that you don't get a lot of junk in your searches as with MSM or AOL or Goolge. Check out Medicow

East Coast Heatwave

On Sunday, the high temperature weather that was sweeping across much of North America finally made it to North Carolina. It has only gotten worse since then. Today was the highest yet with a heat index of around 104 degrees.

Like everywhere else, the air conditioing at my office is not quite able to keep up with the weather. Today and yesterday, I had a few more partial seizures. I suspect it is due to the heat...

Good weekend.

This weekend went quite well. Relaxed a lot and did not have any seizures. Very happy about that.

Settings Adjusted

I got my VNS settings adjusted today. As my device is working well in reducing my seizures, I simply had them adjust the magnet-activation setting so that I could feel it better when I manually activated the VNS. (current was upped from .75 to 1.0)

In addition to the adjustment, Christa and I spoke with Dr. Dean and another staff member at the Epilepsy Institute about some projects. Christa is going to be setting up a support group for the triad area, and I will be doing some consulting regarding the Institute's website. Two other projects are in the works as well - more on them later.

Upcoming VNS Adjustment Appointment

On Friday I will be going in for another appointment with my neurologist, Dr. Dean. My current VNS settings are:
Pulse Width: 250
Frequency: 20 Hz
Off Time: 1.8 minutes
On Time: 30 Seconds
Current: 0.75 mAmps

The Cyberonics VNS has definitly had a positive impact on my number of seizures. It has taken quite a while to get the settings to an optimal level, but I feel pretty satisfied with them now. I don't intend to change anything besides the current of the magnet activation setting. I have it at .75 mAmps. I want to boost that to 1.0 mAmps.

Vacation to the Beach Cures Epilepsy!

I'm back from the beach... While on vacation, my seizures/day dropped to zero for all but 2 days!

I can only assume that going on vacation cures seizures. Sure, it is not a highly accurate scientific study, but with enough $$$ placed in the right hands it would probably pass the "stringent" US FDA testing standards. Now I just need some clever marketing strategy and a nifty name... how about a little blue sugar pill called Vactium. Take two of these each day while spending most of your day on the beach or sleeping and it will reduce your seizure activities by 50 percent or more!

Enough fun... Seriously, reducing stress in your life can reduce the number of seizures you have. This definitly works for me. When combining low mental stress, a VNS, and a few AEDs, I was able to eliminate them most days. A very good thing. I suspect that getting back to work and "normal" life will increase the number I have... However, maybe I should take up Yoga or some sort of meditation exercises to reduce stress during the week. Anyone know of any good books or websites?

2000 Page Views!!

Sometime during the last week, I topped 2000 hits to Living With Epilepsy. I never dreamed I would get this many. Much thanks to all who have linked to my site!

Still On Vacation...

Meta Blogging: I got Farked!

Somehow I got Farked. Yes, someone at Fark.Com posted a link to Living With Epilepsy. I can't find the link on their site (if someone would post it in a comment, I would be most grateful), but I have gotten a ton of hits from Fark.com. Although, it is likely the poster was making fun of my poems, I appreciate the link. When you run a small blog like mine, you take whatever traffic you can get. So whoever the Farker was that did the post, my thanks to you!

More Epilepsy Limerics: Tall & Wide

Alright, due to some interesting events, I am wrapping up "Limerick Week" a day early. With these last two poems I made my best attempt at meeting the classical limerick form.

Start by introducing a person or place. Set up an interesting story. Then end the poem with a humorus twist.

This is not an easy when trying to keep on the topic of epilepsy. It involves introducing someone, making something really bad happen to them, then following that up by somehow adding a bit of a surprise and humor. Well, here are my results:

The Tall Man

There once was a man who was tall
But his epilepsy caused him to fall
..Smashes to the noggin
..Gave his body a floggin
Now he’s considered quite small


The Wide Man

There once was a man who was wide
But epilepsy made him fall to his side
..No smash to the face,
..But the hips and the waist
No longer his girth he must hide