Hello CWE, Bruce is in the house

[batman]

Now just where did you find out about that article Robin? Humm.

This thread was split off from Women and Epilepsy so everyone could welcome Bruce to the forum.

[RobinN]

I certainly can't remember, as I read a lot of articles in many places.
Does it matter where I was linked from?
My reason for posting is to give those in need the information.

Did I step on your toes somehow?
If so, I apologize... would you like a link? Please remind me where I found out about it.... if you know.

[batman]

No Robin, you didn't step on my toes. I'm Bruce...aka 'batman' (on the efa eCommunities), 'grez-monkey' (once on the epilepsy.com community forum before it turned into what it is now...my.epilepsy.com), and Bruce78640 on the epilepsy support group via the webmd.com...which is nicknamed "epland".

I found out about that article this past weekend when I received the May/June 2008 issue of 'Neurology Now', read the article and then a few days later, checked and found out that the same article was made available for the public to see, on the neurologynow.com website. Whether if you did, or did not, I don't mind if anyone shares my postings.

Just trying to locate the option to include my signature line.

[RobinN]

Hi Bruce, thanks for the clarification.

I am not sure if you have been a member long enough to have a siggy line yet. We have a waiting period, so as to keep those with bad intent away. Not to say that you do, we just have a rule that you can not post or link to sites until you have been here awhile.

Hope that explains it.

[batman]

Understood, and easy to accept.

Thanks

[Meetz1064]

No Robin, you didn't step on my toes. I'm Bruce...aka 'batman' (on the efa eCommunities), 'grez-monkey' (once on the epilepsy.com community forum before it turned into what it is now...my.epilepsy.com), and Bruce78640 on the epilepsy support group via the webmd.com...which is nicknamed "epland".

I found out about that article this past weekend when I received the May/June 2008 issue of 'Neurology Now', read the article and then a few days later, checked and found out that the same article was made available for the public to see, on the neurologynow.com website. Whether if you did, or did not, I don't mind if anyone shares my postings.

Just trying to locate the option to include my signature line.

Hey Bruce! Nice to see ya! Glad you made the jump over here to check things out......You'll like it here, I promise.

Meetz

[Bernard]

Hi Bruce, welcome to the forum.

I'll bump your usergroup so you can post a sig, but the restrictions on posting links/images are hard coded, so you'll just have to be patient for a little bit as you get to know the community. In the meantime, you can post links if you put spaces in the URL and the mod team will fix them for you.

[RobinN]

Hi Bruce - I forgot to welcome you to CWE. Glad that you joined us.
Hope that you find this a nice place to hang out a while.

Are you personally dealing with this disorder?

[tinasmom]

Welcome Bruce -
I also post on the efa communities from time to time. Nice to have you here.

[speber]

[paradise survivor]

What's your story Batman- are you a caregiver, living with E, or is it educational?

[batman]

I want to apologize for not posting my reply sooner. Saturdays are when I spend most of the day with my parents in order to do routine shopping along with every once in a while helping them around their house. We just exchange favors with one another. This past Friday, I was working on posting replies on this support group, but kept getting stuck in the Internet’s ever famous "Page Not Found”.

I want to thank everyone who has welcomed me to the CWE. I've been around the epilepsy block many times, but it's more like being in "Epilepsy World" or “Epilepsy Land”, or maybe on "Epilepsy Island". Heck, here's one for ya. When I was in the Navy I was stationed on board an aircraft carrier (USS Saratoga CV 60), so maybe after that, I've ended up being on board the 'USS Seizure Disorder' or 'USS Epilepsy'. I first started experiencing weird, unusual, and hard to describe feeling way back in February 1987, which was roughly just 1 month after being stationed on board that aircraft carrier. Back then, I didn't know anything about seizures (szs) or epilepsy (ep), but since I already knew what it’s like to be lightly being shocked by electricity, I called those feelings “jolts”. Then when I had learned about szs and ep, I realized that those weird, unusual, and hard to describe feelings were simple partial seizures (simple partial seizures). Ever since then I’ve experienced simple partial seizures pretty much every day. The strength and frequency of those simple partial seizures have been anywhere from just 1 simple partial seizures by itself that I can barely even notice; all the way up to a daily cluster of simple partial seizures that starts off with "WHAM!", as if I just hit the funny bone in my elbow. Those simple partial seizures will repeat themselves one after the other with the strength of the seizures slowly fading away.

The very first tonic clonic (t/c) seizure I had was back in July 1994. The doctor I was seeing way back then prescribe some anti-epileptic medication (anti-epileptic drug), which resulted in to me not having any more t/c szs until in March 1996, another in the following April, and then another 3 on the same day of May 28, 1996. The doctor back then started me on the medication merry-go-round, which eventually resulted in to those t/c szs becoming under control. However, around that same time is when I started experiencing complex partial seizures (complex partial seizures). I am currently taking Lamictal and Keppra twice a day. I have been on Dilantin, Divalproex (which is an extended release of Depakote), Phenobarbital, Tegretol, and Neurontin. I’ve been through a few general EEGs; MRI’s, a CT scan, 3 separate 24 hour video monitored EEGs (video EEG), the third/last of which was a presurgical EEG (electrode strips and grids), brain mapping, and WADA test. The results of that presurgical EEG showed too high of a risk of permanently losing my ability to speak. By the way, I’ve medically been diagnosed with having Temporal Lobe Epilepsy (temporal lobe epilepsy), due to an underdeveloped blood vessel in my left temporal lobe, but by reading information online, think I have abdominal epilepsy. For multiple reasons, I have no intention of having the VNS installed into my body.

The worst experience I’ve gone through, due to having epilepsy, was being forced to leave a church that I had been a member of for nearly 6 years, and this took place shortly after one of my re-occurring complex partial seizures had finally taken place inside the church. When a person has this particular type of seizure, the individual will most likely repeat the same movements, such as doing a variety of things with their hands, like picking at their clothing or moving papers around on a desk or table. Each one of these different movements is called an automatism. My parents and a few neighbors who’ve seen me having complex partial seizures have told me that I’m usually making some humming noises, or turning the upper portion of my body towards my left side, and or moving my right hand in the area below my belt. So for whatever I did when I had that one complex partial seizure inside that church, it apparently scared enough people in order for the church leaders to make up some downright excuses just to permanently force me out of that church, back in December 2001. I now consider that church being a “Church of Chickens”.

For many years now, I’ve been to multiple epilepsy conferences, and to me, the best is called the S.E.E. Program. S.E.E. stands for Seizure & Epilepsy Education. The first SEE Program I attended, was a 2-day presentation, that took place in Houston, TX, back in November 2004; and the second SEE Program I attended, was a 3-day presentation, took place last year in Dallas, Texas. The individual who created and does this presentation is a neuropsychologist, explains the details in a matter so easy, that even people with epilepsy, like myself, can understand it. And guess what? There is a special 1-day SEE Program presentation that’s going to take place on Saturday, August 23 of this year, in Lubbock, Texas. For more information about this upcoming presentation, please visit the website of …theseeprogram.com/html/lubbock__tx.html

Here are some thoughts that I’d like to share with everyone who reads this reply. In several of my previous postings and replies on other epilepsy support groups, I’ve said that “Knowledge is Power; but it takes Awareness, Communication, Support, and Understanding in order to build up that Knowledge.” I don’t care if somebody wants to call me an epileptic. To me, it doesn’t matter what other people say when they want to make fun of people who have epilepsy, because the stigma that’s being thrown at us are coming from people who want to be “the center of attention”. Just because stigma is being thrown at us, does not mean we have to catch it. Because, if someone catches the stigma that’s being thrown at them, then the person who threw it has become successful with what they were trying to do. And they’ll continue throwing more and more stigma, however many times necessary so they can continue to be “the center of attention”.