As an epilepsy nurse, part of my job was talking with patients about their seizure frequency, which helped us determine if we should adjust our seizure management plan. I found patients who had access to a “tool” seemed best prepared and benefited more from their appointments.
Each individual learns what techniques suit them best, but here are some of my favorites:
This free website and iPhone App provide easy-to-use tools to create personalized reports of seizure activity that can be shared with the medical team. Creators Rob and Lisa Moss weigh in with details below.
Jill: What sparked the idea for Seizure Tracker?
Rob: We started Seizure Tracker as a way to manage our son’s epilepsy. We wanted to keep track of seizure activity and medications to see if we could identify trends or anything that was helpful. When we showed it to our neurologist, he asked if we could make it public so that anyone can use it. At that point we had to make it more comprehensive so that anyone could use it.
Lisa: We actually finished it in the hospital during a 3-week stay while our son underwent brain surgery, and we launched it from a waiting area in the hospital by announcing it on a list serve for tuberous sclerosis complex (TSC).
Jill: And now this tool includes an iPhone App – what does the App do?
Rob: We knew we needed to figure out a way to really utilize the features of a smart phone so we designed an iPhone App that would record a seizure in real time using both a timer and the video camera. The app has the ability to sync up to the Seizure Tracker website so that all the information collected is available in both platforms. It also changes the way people log seizures because they can do it anywhere, anytime, anyplace by simply picking up an iPhone, iPod, or iPad to capture seizures as they occur.
Visit the Seizure Tracker website here.
Smart Watch is an easy-to-use, non-invasive wristwatch that continuously monitors movements and instantly alerts connected family members and caregivers upon the onset of repetitive, irregular shaking motion. I had the chance to speak with creator Anoo Nathan.
Jill: How did you get the idea for Smart Watch?
Anoo: On Christmas Day a few years ago, a single mother reached out to me to share a frustrating story. Her teenage son suffered from epilepsy, and she desperately sought a way to monitor him while he slept and while she worked. Until then, she had set an alarm to go off hourly – day and night – to check on him.
I launched Smart Monitor in 2009 with the mission to develop an easy-to-use monitoring device that would immediately notify a family member when the user needed help.
Jill: How does SmartWatch work?
Anoo: When repetitive motion is detected, SmartWatch sends automatic alerts to family and caregivers so they may provide timely assistance. For added safety, help can be notified with the push of a button. All this said, I must note for that SmartWatch does not claim to prevent, predict or treat seizures or any other kind of medical condition. SmartWatch also does not claim to diagnose, cure, treat or prevent disease.
Jill: How can SmartWatch help patients track their seizures?
Anoo: In addition to other features, SmartWatch automatically records excessive movement patterns plus time and duration of event. These reports can be securely accessed for later review, and can be shared with healthcare professionals.
Visit the SmartWatch website here.
My Epilepsy Diary
Simple-to-use is a common theme in this post, and My Epilepsy Diary is no exception. This website and iPhone App allows one to create a diary and track seizures, mood changes and other events. Details can be filled in quickly as the diary comes pre-populated with common situations. It has the ability to set e-mail or text reminders to help patients stay compliant with medications. To better prepare, it allows complete records to be printed prior to a doctor's appointment and aids in identifying and monitoring long-term trends.
Visit the My Epilepsy Diary website here.
In the comment box below let me know what you use to track your seizures – it could help others keep better track of their seizures too. How do you track your seizures? Please share below.