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Saturday, December 1, 2012

End of Epilepsy Awareness Month

Yesterday was the end of Epilepsy Awareness Month. To those of you who purchased Auto Respond last month, thank you VERY MUCH.

I only got 3 purchases last month, but I still donated $10 to each organization (The National Epilepsy Foundation, and my local chapter - The Epilepsy Foundation of Rochester, Syracuse and Binghamton.) It's not much, but I know that to organizations like that every little bit helps.

Throughout the month I posted an Epilepsy Fact of the Day (#EFOTD) on my social networks. For those of you who may not have seen my posts, or may have missed a few, all of my facts (and their sources) are now available in a word document located here:

If any of you would like more information on Epilepsy, now or in the future, feel free to contact me or contact your local chapter of the Epilepsy Foundation.

Thanks again for the support I did get, and I hope you have all learned something from one of my facts or blog posts this month!

Sunday, November 25, 2012

Making Life Better

Here's a lesson on how to make life more bearable. This is a very specific example of a strategy that can be applied to many situations.

A long time ago, I made myself a promise. I promised myself that I wouldn't allow my epilepsy affect my life. For anyone who has epilepsy, or knows anyone who has epilepsy, you know that keeping that promise is impossible.

Instead, over time I have changed my mission statement. I've decided not to allow my epilepsy to affect me negatively. I know what most of you are thinking... How? How does epilepsy not affect you negatively?

Well, there are positives and negatives to everything in life. I learned this, more than ever, in college. I went to college for Computer Engineering Technology. As part of my degree, I learned that for every choice you make in designing computer hardware there is always a positive effect and a negative effect. More memory means you can process more information (+) and get results faster (+) but it costs more money (-). Larger cache means that data is transferred quicker (+) and is processed quicker (+) but at a higher possibility of data mismatch (-). The entire premise of my degree is deciding which benefits (+) outweigh the costs (-) involved.

Using this same idea, I can say that for everything has my epilepsy has caused negatively, there has also been a positive aspect. I have seizures (-) but I can go to epilepsy camp (+) and have made life-long friends (+) and memories (+) while there. This summer I had my first seizure in 7 years (-) and can't drive for 6 months because of it (-), but I was able to find a medication which is better suited for me (+) and I learned more about where in my brain my seizure are generated (+) as well as how my seizures actually progress over time (+).

Life as a whole is about getting more positives (+) than negatives (-), and I can truly say that I have had more positive than negative in my life due to my epilepsy. But if I didn't have the right attitude toward the situation, this would not be the case.

I have dedicated a large portion of my life to not only making MY life better, but also to giving other people with epilepsy a better standard of living. I went to camp as a camper from the ages of 8 to 17. When I turned 18, I became a counselor at camp, and I do so for absolutely no compensation. I Volunteer a week of my summer (-), every year, to being with these kids and making their lives better (+). Now, don't get me wrong... I don't do it ENTIRELY for the kids. Camp is still a GREAT time for me as well (+). Most of the people who I grew up with at camp are also still there as counselors (+), some of which are my best friends (+), and I wouldn't ever allow myself to not spend that week with them.

Tonight, I spent time talking to a friend with a 4 year old son who just had his first seizure (-). Explaining to her how to deal with it (+), what what it means to her and her child (+), and where to go to get information (+), among many other things (+++). This is something that I enjoyed thoroughly. Don't get me wrong, I'm not at all glad that her child had a seizure, and I feel awful that she had to witness that (-). But I did enjoy talking her through it. Witnessing her go from a scared parent, to a calm and collective parent with a plan of how to proceed with her son's potential treatment. The joy of the fact that I was able to help someone deal with what I KNOW from experience is a terrifying thing. As far as my +/- count goes, that's about (6+) and (2-) for my friend. She now has information, confidence, and security even though her son had a seizure.

Now, as I alluded to earlier... it is impossible for epilepsy to not have any negative impact on my life. But if my epilepsy leads to more positive impacts than negative impacts, the OVERALL impact  is positive; and that's the part that matters.

TL;DR - In life there are positives and negatives to everything. If you can find a way to create more positives than negatives, ANYTHING can become a positive impact on your life.

Wednesday, October 31, 2012

Epilepsy Awareness Month


As you may or may not know, I posted a personal update a month or so back which talked about switching to a new medication, and the impact it was having on my life at the time. I'm switching from a medication that I have been on for roughly 25 years which I take to control epileptic seizures.

27 years ago, my mother gave birth to a healthy 9+ pound baby... with epilepsy. My parents and doctors tried 2-3 different medicines to control my seizures before settling on Tegretol; which I was on from a very young age (probably around 3) until about a month ago. It controlled my seizures well but, since I have been on it longer than I can remember, I had no idea what side effects I was seeing from the medication.

In July I had my first seizure in over 7 years. Since I had a breakthrough seizure, my doctor suggested I try a new medication which tends to have fewer side effects. So far it is doing wonders for me. No seizures since the one in July, I have MUCH more energy, I can think more clearly, and I just feel like a weight has been lifted from me.

Another thing that happened as a result of the seizure in July is that I cannot drive for 6 months. Assuming that my new medicine (Keppra) continues to work, I can start driving again in early January. This has made for an interesting and challenging few months. It has been almost 10 years since I've had to have someone drive me everywhere I go, and I was quickly reminded how difficult that can be at times. However, I'd rather be safe than sorry. Until I know that my new medicine is working properly, not driving is a good idea anyways.


This is just one of the many chapters in my life-long battle with epilepsy. And as strange as this may seem to many of you, I'm sometimes thankful for my epilepsy.

No, it is not fun having a seizure; waking up and not knowing where I am or what happened. It's not always fun having to explain my situation to others, or even being criticized or mocked because I have seizures. (Unfortunately, that was not an uncommon occurrence when I was a kid.) But on the other hand, my experiences have made me a stronger person. And the local Epilepsy Foundation and their programs (mainly Camp EAGR) have introduced me to some of my best friends and led to some of the most fun times I've ever had.


All of this being said, tomorrow is the beginning of Epilepsy Awareness Month. Most everyone knows that October was Breast Cancer Awareness Month; it's pretty hard to miss it. (At least it is in the US.) Something most people DON’T know is that November is Epilepsy Awareness Month. It is not highlighted nearly as much as breast cancer is, but there are a lot of people trying to change that.

To me, "Breast Cancer Awareness Month" seems to be more about raising money for research than it is awareness. With epilepsy awareness month my PERSONAL goal is not to raise money, but rather to educate and truly raise awareness.


To raise awareness, I have compiled a list of 30 lesser-known facts about epilepsy. These are facts that have been taught to me over the years, mostly by the Epilepsy Foundation, and that I feel are important for other people to know. The facts have been arranged in a specific order to start small, and eventually move to some more mind-blowing facts. They also progress with a very logical flow.

Each fact contains not only a fact, but a credible source of where the information can be confirmed. I will be posting these facts, one a day, on all of my social media networks as my "Epilepsy Fact of the Day", and they will be tagged with #EFOTD. Feel free to join me in my on-line activities by retweeting my tweets, reposting my posts on Facebook and Google+, or even by doing your own thing.

Just as breast cancer has a color, so does epilepsy; our color is purple. If you would like to join me in my quest to spread knowledge you can wear purple, put one of our purple ribbons as your Facebook, Twitter, or other online profile picture, get some purple lights for your light fixtures (yes, they do sell them!) or be creative in other ways. Just as pink does, purple seems to grab people's attention. So no matter what you do with it, people will be sure to ask you about it!


If you haven't gathered already, I am very open about my epilepsy and do not mind people talking to me about it. I actually enjoy talking about my experiences with epilepsy, I enjoy teaching people about epilepsy, and I hope that my actions (as small as they may seem) can impact some people. I hope to spread accurate knowledge, as well as get rid of some of the myths and misinformation that is out there, and I hope that you will help me.


I was born with epilepsy. November is epilepsy awareness month and I will be posting a "fact of the day" all month on my social media networks. Feel free to talk to me about it.

Monday, September 17, 2012

Personal Update

This post was originally part of my development blog, and has since been moved.

I'm at a point with Auto Respond that I just want to keep going, and keep the momentum moving.

Unfortunately, I have had some things happening in my personal life over the past few months which make this a little harder. I am in the middle of switching from one prescription medication to another. Both of these medications have a side-effect of "may cause drowsiness". In my case, that "drowsiness" is the main side-effect that I see from both medications. On Friday, I started on my full dosage of the new medication, and I am still at a full dosage of my previous medication. So right now, I do not always have energy. Saturday, I slept almost all day. Today, I had to go to work, but I have been half asleep all day.

The result of this is that I may not be programming for the next few days, even though I REALLY want to. I am excited to get some new things built into Auto Respond, but I have no energy to do so. I tend to get energy bursts late at night, so if this happens I may get a few hours of work done in the next couple days.

With the last couple dosage increases I have returned to "normal" energy after about a week, so hopefully I will be back to "normal" by the end of this week and can make some progress on Saturday. (I don't program much on Sunday... it's football day. American football, for those of you from outside the U.S.)

The basic purpose of this post is to give you a SMALL insight into what is going on with me personally and to let you know that even though I posted some work the other day, that work may not be completed for quite some time. I apologize if I got you excited for the new version just to tell you that it will likely be delayed, but at least you know what to look forward to in the coming weeks. :-)

EDIT: If you want to know more details about the situation, check out my Twitter and Google Plus feeds. Information about this specific scenario will have started on or after July 3rd, 2012.
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