This blog was written for the June 2018 Epilepsy Blog Relay. Follow along at Living Well with Epilepsy!
(Disclaimer: This blogger is not affiliated with, and does not earn compensation for technology recommended in this article.)
I am not an incredibly tech-y person. In my family, that training, title and trophy goes, without competition, to my brother. The rest of us just draft his tail winds and try to stay relevant enough to not get left behind in the eras of VCR’s and DOS.
So while I follow upcoming technology innovations for epilepsy, this blog will touch on the tech that has helped in our fight against epilepsy the most routinely. Without the past decade’s worth of electronic innovations, we would be years behind in our daughter’s progress towards healing. Not taking into account the medical equipment doctors use to help our child, our first technological assistance came in the form of internet access to the epilepsy community.
Online Forums:
I can’t over-emphasize the level of practical education and support available online. Whether you are new to the world of epilepsy or a veteran who has not yet considered it, applying to private support groups, where families living on the front lines of the war against epilepsy share what has helped diagnose, control, mitigate and heal from seizure activity, is incredibly helpful. Early access to these electronic support systems provide everything from how to make contacts within the Epilepsy Foundation and how to find the best neurologists for your child, to what apps and devices help keep our loved ones as safe as possible. My current favorite group Facebook’s Parents of Children with Absence Seizures . (Don’t let the title fool you, all types of seizures are addressed here). In addition to groups that may have international participants, also join groups in your local state or region. Local groups enable us to make friends who provide presence.
Apps:
Type the word(s) “epilepsy” or “epilepsy seizure apps” into the search engine in your smart phone’s app store and you will find dozens of support groups, journals, diaries for seizure monitoring, and news outlets offering relevant articles on seizures and medical advances. Early on, we used Google Play’s “Epilepsy Journal” by Oily Tree Applications. This app enabled us to log the start and stop times of seizures, their type, any triggers (waking, fatigue, medications, illness), what activity our child had been involved in at the time of the seizure, and what rescue protocol was used. This app also allowed us to video the seizure activity and store it with the relevant log, for easy access during neurologist appointments. Apps like this can also graph changes, over time, in any of these criteria. When you’re tasked with remembering every seizure, duration, and especially changes in them over time relative to triggers and medication alterations, this tool is invaluable.
Seizure monitoring:
The tool which enabled my child to become an independent sleeper in her own bedroom again (not camped out on a mattress in the floor of her parent’s bedroom) was her own SmartWatch by SmartMonitor, and thus an accompanying smart phone and related apps. The watch detects any repetitive shaking motion then transmits an alert that abnormal activity is occurring to it’s wearer’s smart phone. The smart phone then texts and calls the wearer’s emergency contacts. A GPS location is also sent. Newer watches have more features including: heart rate monitoring, sleep and activity tracking.
Education:
A last incredible resource to people battling epilepsy are “Learn and Share Conference Calls” with your local Epilepsy Foundation chapter. After registering, you call in on a set date and time to be a part of a call with top neurologists and educators. The calls address particular topics related to epilepsy, and participants are often given time to ask the experts questions, providing specific learning opportunities not available during regular doctor visits.
These and other technology advances continue to push us toward lives lived well with epilepsy.
Wishes For Mercy 