An Incredible Tool for Tracking Seizure Activity
By Jan Carter Hollingsworth
Exceptional Parent, Jun 26, 2007 – 4:28:47 PM
Eric Schumacher, President and CEO of NeoMed Software LLC
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Eric Schumacher knows all too well the trials and tribulations of tracking seizures and daily activities in the ongoing attempt to gain seizure control.
Diagnosed with epilepsy in his teens, he is now bringing a new and innovative tool to the market that could help countless people with epilepsy, gain better control over their seizures and thus achieve a higher quality of life.
6:00 AM Woke up
6:30 AM Exercised
7:00 AM Ate breakfast &ndash cereal, fruit, coffee
7:30 AM Left for work
Sounds like the morning schedule of millions of American, right? However, for a person who is challenged with epilepsy and seizure activity, that schedule could look like this:
6:00 AM Woke up
6:15 AM Took seizure medication
6:30 AM Exercised
7:00 AM Ate breakfast &ndash cereal, fruit, coffee
7:30 AM Left for work
9:30 AM Medium intensity seizure &ndash no aura
For those without seizures, painstakingly tracking the mundane activities of daily life would be unusual; however, for many of the 2.7 million Americans who have epilepsy, this sort of chronicling activity is just another way of trying to take control of their seizures, toward the ongoing of a higher quality of life. One of the first activities an epileptologist will now ask a patient, and/or a patient’s family, to do is track the time, severity, and duration of a seizure episode as well as the daily activities that surround a seizure. This is especially necessary today for people managing seizures with one or a combination of a host of the highly effective seizure medications that are now on the market. Seizure medications can have side effects, so it often takes much dosage tweaking to create that perfect balance of seizure control with the least amount of side effects. Experts also now know that a variety of factors can trigger seizure activity; they also know that each person’s triggers and subsequent seizure activity are as unique as their own fingerprint. For some, seizure activity may be aggravated by lack of sleep; for others, it might be exacerbated by alcohol consumption or eating meals at odd times of day. A host of other daily activities can act as triggers as well, and it can even be several of these activities working in combination with one another that act as the trigger. With all this in mind, it is easy to see the benefit of a patient, along with his or her doctor, being able to analyze daily activities in an effort to establish patterns that may be leading to the onset of a seizure.
Eric Schumacher was all too familiar with writing down his every daily move. Experiencing his first seizure when he was in his late teens, Mr. Schumacher, with delusions of invincibility inherent among those in their late teens and early twenties, didn’t get serious about seizure management until he was about 25; that’s when he began tracking his seizure activity. For the next ten plus years, a visit to his doctor included the obligatory notebook filled with hand-jotted notes that represented weeks of granular daily activity information. Recognizing that this method still did not offer the snapshot needed to analyze the data, he next tried condensing it in spreadsheet format. This, too, was not highly effective. Then, a little over a year and a half ago, he hit on the idea that at first glance seemed like just another way of managing his own seizures. With over a decade of experience in software marketing, Mr. Schumacher well knew the diverse uses of computer software. What if he could develop a software program whereby those with epilepsy could record their seizures and other daily activities, and the computer program could then analyze and graph the data, taking that organizational snapshot that the other elementary methods of seizure record-keeping could not begin to attain. Mr. Schumacher called up his friend Wolfgang Huber, a software developer he knew from the German software company Mr. Schumacher used to work for and pitched his idea. Was such a software product feasible? Yes, it was, and the two men began development consulting with a host of epilepsy experts, adults with epilepsy and parents of children with epilepsy. And then Mr. Schumacher started dreaming big, quickly realizing that this tool could help countless individuals attain greater seizure control. NeoMed Software LLC was born, and its first endeavor, EpiTrax, a software application designed to improve the lives of individuals with epilepsy and seizures, is now available.
This software is the most comprehensive, user-friendly product on the market today. The program allows users to record daily journal logs. This includes a question and multiple-choice answer format as well as a place to make general notes about everything from seizure episodes to daily activities. (See Illustrations A and B) It allows the user to analyze seizure trends (See Illustration C) as well as possible correlations (See Illustration D) between seizures and seizure triggers, and, finally, to generate reports that can be taken or emailed to an individual’s doctor or shared with friends and family that are team members in a person’s seizure control plan. The software includes a place to make notes from recent visits to the doctor and a place to jot down questions and comments that might need to be addressed with the doctor on the next visit. (See Illustration E) The software also offers the flexibility of recording thoughts and feelings or other notes in free&ndashform fields. Uploading files, such as documents, spreadsheets or graphic files, is also a handy feature and these can be stored along with journal entries.
The NeoMed website (www.neomedsoft.com) is a veritable treasure chest of information. The software product is explained and highlighted with easy-to-follow animation components that walk a potential user through the process of recording daily journal entries, making notes in the free-form fields, or generating reports. The software can be purchased online, and the website is as useful a tool after purchase as it is when researching the product with users having access to online technical support, a frequently asked question page, and a 40-page user’s manual. Additionally, NeoMed recently launched an online epilepsy forum. The EpiTrax Forum is designed to support individuals who are currently, or want to, track seizures and seizure triggers. The forum is free to all users and offers a safe place where people with epilepsy, and their loved ones, can go to meet other people with epilepsy, share information about seizures and seizure triggers, and gain support for dealing with their chronic disease. Through online conversations, users will learn helpful ways to track their seizure activity and their seizure triggers as well as gain a better understanding of what to track and why. The EpiTrax Forum also provides the growing EpiTrax user community with tips for entering and interpreting critical information with the software, answers to common user questions, and the latest product and company news.
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Looking toward the future, Mr. Schumacher comments, “This is version 1.0 of EpiTrax, and we hope to take this tool far beyond where it is today.” He sees this being accomplished through the addition of expanded functions as well as offering the software in a mobile, hand-held device. An online version is also in the development stages that would allow users to access their information from any computer with Internet access, and users could also give their doctors backdoor access to pertinent information. Mr. Schumacher also sees this type of software being used with other diseases. He commented, “Since this software is very event based, we primarily see potential with other types of episodic diseases like migraines, Crohn’s disease, and irritable bowel syndrome.”
When asked if fatherhood has further shaped his response to and management of his epilepsy, Mr. Schumacher responded with a resounding yes. “Having a child has definitely made me much more diligent and more aware of what’s happening, and that has been a really big incentive for getting better at tracking my seizure activity.” He goes on to say, “Having a child has also opened up another thought process in my brain, that of giving back. For years I was so internally focused on my own health concerns, and having a child causes you to think outside yourself as you care for this new little person. Once out of that me–first mindset, it to tends have far–reaching effects on how you think about people in general and I knew I wanted NeoMed to have a philanthropic component.” Mr. Schumacher mentioned that despite its prevalence, epilepsy remains one of the least funded neurological disorders. For that reason, NeoMed actively supports epilepsy-related services and research by donating 5% of all software proceeds to the cause.
No doubt, this is only beginning for this fledgling company as NeoMed grows and expands to meet the needs of those challenged with epilepsy and other episodic disorders.
