Emergency app to alert contacts of seizure?

[RiffRaffMama]

Hey all,
I had the wondrous experience of having a TC at the supermarket a few weeks ago and as is always the case, postictal me struggled to answer simple questions about who should be phoned and alerted to the fact that I was laying barely conscious on a concrete floor surrounded by groceries and strangers. I'm "lucky" in that I usually have an unmistakeable aura for about 5-10 seconds before I lose consciousness and it does allow me to alert any companions to what's about to take place. However, at times, like the supermarket performance, I'm alone and it's got me thinking about how there must me some app out there that's very fast loading and allows you to just press the icon and then press a big red button and it instantly, automatically sends a text message to your spouse/parent/etc to inform them that you are having a seizure and send them your current GPS coordinates.
I know iPhones are capable of all of those things, and I've even located a few apps but I'm hoping someone out there already uses one and can shortcut my search and point me in the direction of a good fast loading one because when you know you're going to uncontrollably lose consciousness within the next 5 seconds or so time is of the essence!
Any ideas?
Many thanks
Tracy.

 

[chmmr]

Not sure about an app, but i know i had read in other places, that people list a contact at ICE-XXXXXXXXX (the x's being the persons name) then if you ever had any kind of emergency, all anyone has to do is scroll the contacts in your phone and see the ICE (in case of emergency) designation and call that person.

http://en.wikipedia.org/wiki/In_case_of_emergency

This part was interesting:

As an alternative to always having your emergency details displayed on the lock screen, there are apps that can automatically display your emergency details directly on the lock screen in the event of your hospitalization, e.g. "activICE" app. This removes the need to permanently display your details on the lock screen and encourages more people to adopt the ICE concept. These apps can also automatically notify your emergency contacts via SMS and e-mail of where you are and how to contact the hospital. These apps work by monitoring your proximity to hospitals and activating only when the device remains in the hospital's Geo-fence.

 

[cadsgj]

Tracy, I do not have an added idea for you here - wish I did - but I do know I will be checking out these apps. What is the name of the apps? And I take my iPad with me most all places as well as a cell phone. I will search.

You mentioned aura and it appears to me you feel the aura is the x period of time we get just as the seizure is coming. Interesting. Do you ever have periods when you feel a seizure might be on its way but it actually does not make it? That is what I was suspecting an aura was but you open my mind a bit here. In the last couple months i have tried looking up aura but got different explanations on just what one is...

Anyhow, if you learn of a good app you are talking about LET US KNOW!

 

[RiffRaffMama]

Thanks for your replies
Chmmr I found the activICE app intriguing and I'm going to look into it to see if its network covers where I live. To be able to contact family without anyone even having to get into your phone is a brilliant idea! It sounds like a great add-on to the app I'm seeking.
The apps I've been looking at are Alert Plus, SOS iAlert, and Send Alert HD. There's no doubt similar ones out there that I haven't listed. I've contacted the makers of these apps to try and find out which country/ies they work in because the App Store is a bit vague on whether they're useful universally or only any good if you're in the US because they send your GPS co-ordinates to your designated emergency contacts, which could be very helpful but only if it can actually locate me here in Australia!
Cadsgj - an aura is a distinctive sensation that some people with epilepsy get before a seizure happens. They are actually a type of Simple Partial Seizure. It can be anything from suddenly being able to "smell" something in particular that is not actually nearby, to a feeling of nausea or "seeing" colours (again, that are not actually there), and just about anything in between. For some people their auras come hours before a seizure hits, for others (like myself) they start just seconds before a seizure takes hold. For people who do experience and learn to identify an aura they can be an incredibly valuable tool because they usually give you enough warning that you can place yourself out of harm's way, alert people nearby to the impending seizure, and minimize injuries to yourself and dangers you may pose to others during the Tonic Clonic/Grand Mal phase of the seizure. My aura begins as a sudden inability to comprehend spoken language, accompanied by extreme difficulty in speaking as well. I know in my head what I'm trying to say but my words come out as a pile of random gibberish that no one can make sense of. This stage lasts around 5 seconds before being cast aside by the massive distress brought on by the next stage - aural hallucinations. I begin to hear sounds you would hear in a crowded public place like a train station - multiple conversations, traffic sounds, just a general hullabaloo, which I know can only be heard by me because I'm rarely actually in a crowded place when this happens. This "hearing things" stage lasts another 5 seconds or so. I begin to get very upset because I'm still fully conscious and painfully aware that these events are the unmistakeable hallmarks of an impending seizure which I can do nothing to halt or prevent. At this point I enter a Complex Partial Seizure and lose mental consciousness, but usually still perform simple automatisms like walking, pouring a drink, or in one terrifying example (for other people, I don't remember any of it!) driving my car for a brief period (less than a minute) before succumbing finally to the Generalized phase of the seizure where I then hit the floor and have a proper old-fashioned Tonic Clonic/Grand Mal fit.
So getting back to auras - if I can get a grip of my emotions enough to accept the fact that I'm about to have another "big" seizure and its out of my control, then I use that 10 seconds of fading consciousness to sit on the floor (which makes a massive difference in terms of bruising!) and attempt to speed dial my husband and hand my phone to the nearest person capable of speaking (my 2 year old is not real handy, but my older 2 kids know what's happening and how to help me until an adult arrives). This is where the app I'm seeking would prove invaluable, especially if I'm alone or only with children - the app would send a message with all the crucial information for me, while I busy myself with flopping around for a minute or two. So if you come across a good app that fits the bill, please let me know!
Tracy.
https://www.epilepsy.com/epilepsy/auras

 

[RiffRaffMama]

Sorry Cadsgj I got all carried away and neglected to answer your question. Yes, I do have times where I think/worry that a big seizure is about to strike, but find it doesn't. This for me happens daily! As I described before, my TC's start with a relatively "harmless" Simple Partial seizure that just scrambles the language department of my brain for a few seconds. I have these Simples every day at the moment (my current medication is not doing its job well at all, but that's another whinge!) and I tensely wait for each one to finish whilst quietly praying to every deity ever recognised by the human race for it to not progress to the "noisy" second stage which always guarantees a "big finish"! Generally my prayers are answered and I escape with nothing more than a dirty look from the person speaking to me because they usually assume my request for them to repeat the last thing they said is a nothing but a demonstration of my rude indifference to the importance of their dialogue Simples usually don't cause many, if any, changes in demeanour so most people don't even realise you're having one. So yes, I do have "near misses" all the time. But no, that's not the definition of an aura. If its a distinctive feeling/activity/sensation/etc that returns periodically that you are speaking of, then it could be a type of Simple Partial, or not. If so, it might be worth mentioning to your neuro/GP as there are medications that control Simples quite well for most people. Those wonderful meds are just evading me at the moment.... *sigh*
Tracy.

 

[Zara-Newman]

Traveling back to the app - there is one called simply 'the emergency alert button' you put contacts in it and attach your GPS and as you said when you hit a button they all get sms/emails or even automated phonecalls if that is set up. It was a bit buggy when I used it. I would suggest just getting a medical ID tag.

 

[Cint]

Traveling back to the app - there is one called simply 'the emergency alert button' you put contacts in it and attach your GPS and as you said when you hit a button they all get sms/emails or even automated phonecalls if that is set up. It was a bit buggy when I used it. I would suggest just getting a medical ID tag.

:agree: Not that I have the fancy iPhone or even an iPad, because I don't see the need of either. I do have a cell phone. A MedicAlert ID has done the job a few times for me here in the states.

 

[Zara-Newman]

I have a bracelet from icegems. For people who don't know what the symbol means it just looks like a pretty bracelet.

 

[CQ:)]

I have a medic alert bracelet aswell, I keep the card which came with the bracelet & has all my details (neurologist number, parents number, allergies etc) in my wallet.

I also have a smaller bit of paper with the same details as my medic alert card but I keep that in my mobile phone cover (it has a couple of side pockets you can put some cards in). I always have my mobile phone on me so I figured that if I ever had another seizure & was taken to hospital then all the ambulance have to do is check my mobile phone cover & they'll see the medic alert info sticking out.

 

[Zara-Newman]

I have the card that came with mine in my wallet too. I had it laminated because I am always spilling things on my wallet - lucky it isn't white.

 

[cadsgj]

I remember the day (after surgeries) when things were pretty minor with me... 3 years no seizures... 6+ years with 2-4 seizures per year... I quit wearing my medic alert necklace. But now since June I am back to the life of seizures and my necklace is back as my main ID - my neurologist believes us seizure people really should have a bracelet or necklace, probably more so for those who come to help us but don't know about seizures.

Oh, and the iPad app for seizure logging I am trying is 'My Epilepsy Diary' and 'E-Action Info' - both of them are free and as I am just starting them, I am not sure which is better or if either is worth trying.