Sunday, May 31, 2015

Some Epilepsy Randoms

Well, as all of you know, I have epilepsy and have had a few seizure setbacks this year. My new neurologist is beyond fantastic and I feel optimistic that we've dialed in on a good medication dosage, so fingers crossed there, folks. Anyway, I have a few random thoughts related to epilepsy so I thought I'd share.

1) I developed a lot of anxiety after my last seizure, and on my doctor's prompting, ordered a medical alert bracelet. I resisted the thought for quite a while but now that I have one and can wear it out while I am alone, I do feel so much better knowing that if something were to happen, someone would know who to call. I found a bracelet that I liked on this website Lauren's Hope. I bought this one, except with a silver medical icon instead of the red - isn't it pretty? It has my name, my condition, and Steve's number and my sister's number.


2). Have you heard of the car service Uber? It's basically an app on your phone that can call a car service, and they have partnered with the Epilepsy Foundation of Georgia! If you use the promo code "EPILEPSY", you will get $20 off of the cost of your ride, and Uber will donate $5 back to the Epilepsy Foundation. As you might know, a person has to be 6 months seizure free to drive in GA (I'm looking at September here, although I am in no rush at all to get back on the road), so a service like Uber is such a wonderful concept for someone with epilepsy. The promo code is nationwide and anybody can use it, so jump on it - it's good through the end of 2015. I will also be shameless and throw another promo code on there that will benefit me too - if you use my promo code "OPR91", you get a free ride, and I think I get a free ride too, or at least some kind of discount. Here is a link to the official announcement of the partnership.

3) People who are around me on a regular basis always want to know what they are supposed to do if I did have a seizure when I was with them. I can't speak for all epileptics, but my neurologist always assures me that I only need to go to the hospital if my seizure lasts longer than 5 minutes, or if I have more than one seizure without waking up in between. The hospital can do absolutely nothing for me, if it's one of my normal seizures, so it would be wasted ambulance/hospital costs. Here is a list of general tips in witnessing a seizure.

4) Speaking of other medical alert news, the new iPhone update includes a Health icon, and when you open it up, there is an option to create a Medical ID. This could be useful for any medical condition, obviously, not just for epilepsy.

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You can add as many contacts from your phonebook as you'd like, so I added Steve, my sister, and my neighbor.

You can click the option to show your medical ID on your lock screen, so it looks like this:

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If you click "Emergency", this pops up:

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And then if you select "Medical ID", the ID you have created opens so theoretically, an EMT or something could know who you were and who to contact and relevant info about what medications you are taking.

The whole process to open the ID seems a little convoluted but maybe EMTs are in the know about this stuff? I don't know. I guess it can't hurt to have it, although I would prefer being able to drag a Medical ID icon right down onto my main home bar.

***My friend Jessica suggested in the comments to make your own ID on your lock screen - brilliant, Jess!! Done and done.***

I hope all that information was interesting to you, and my only other piece of advice is if you have a friend or relative with epilepsy, don't ever be afraid to ask them questions about it or ask what you should do if they were to have a seizure with you there. Every form of epilepsy is different, so it never hurts to clarify with your loved one!

2 comments:

Jessica T said...

I actually use my lock screen as my "medical id." I created my own picture that has my name, my medical allergies, and two emergency contacts. As long as the a person helping me clicks on the main button, all my info is right there.

So glad to hear you are doing well and hope to see you and your sweet family again soon :-)

Kirby Lynn said...

I'm sorry that you've still been experiencing seizures, and really hope that your new medication dosage does the trick!