Emergency Garage Sign

I had invested in one of those services which now supply a pendant you wear around your neck. Yes it cost money and required prior setup of emergency numbers, but this service saved my life when I had a stroke caused by a bleeding meningioma. I pushed the button, told them I thought I was having a stroke and passed out. Two days later I woke up in the hospital’s neuro ICU. The service could tell where I was and called the local 911 and told them the code to my garage to get into the house. Also called my 2 sons. Someone, don’t know who, told my sons which hospital I was being taken to. The out of state son took a picture of my medical directive giving him the authority to make my medical decisions and sent it to the hospital where the surgery was to take place.

With our situations we really have to prepare for the worst case scenario. While it may not ever happen we still have to be ready. I was just telling someone about a very bad seizure I had on Saturday. If my wife had not been with me I would have been stuck on a sidewalk alongside the road (or worse). This is where I find we live in this awkward position of having to navigate catastrophizing between a balanced life. Today I was volunteering with my service dog in a hospital. We go and meet with patients that are either just getting out of surgery or who are very sick. I had to tell the volunteer coordinator about my epilepsy and what my seizures look like. It was very awkward, but I had to do it. A larger hospital in town refused to allow me to volunteer because of my seizures. Needless to say I shared they were violating ADA, I had a letter from Mayo saying I could serve as a volunteer. They then said I needed to make a six month commitment to volunteer once a week. We all know we can't commit to something like that. The point is I feel we need to plan for the worst, be open about our diagnosis, and keep the flow of communications open and honest. Do you all agree?

Tagging a few members who've discussed epilepsy to see if they have practical ideas of things that they've done or thought about doing to help others if you're having a medical emergency @tonyde @closetmonster93 @kb2014 @jgu @motobee @baa @lisav22 @royanthony.

I have always worried about emegency personnel having to bust down my locked door. I'm going to tape a list of numbers for emergency personnel to call to gain entry.

Tell your family and selected neighbors what can happen to you during whatever medical emergency you may have (including the embarrassing things that you don't want anyone to know) They need to pass that information along to medical professionals.

MY BEST SUGGESTION: Doctors handle hundreds, even thousands of patients. Do something to make sure your doctor remembers who you are. Bringing doughnuts or a box of candy makes you a person not just a patient. It gets you a little more attention. My wife oftens bakes a cake for our doctors. Needless to say, they look forward to our visits. Emergency personnel can get a lot more information from a doctor who remembers you clearly.

@lisalucier In response to the conversation here regarding practical things. For me, something that I have made a priority for safety reasons is; no matter where I am or go, I always take my phone with me, I have the location on always for loved ones so they can see where I am. If I am on my own, I let someone know, where I am, and check in, whether its a message, text, someone always knows where I am. Its about safety, because you do not know sometimes, even with an aura, what can unfold. Seizures are unpredictable. I have found that when I have had the worst seizures, I am and was always alone. Whether it be in a bathtub, or wherever, without fail, it is always when I am alone. Many of these times, I was not stressed, completely relaxed, so, I have made it a point to carry a phone with me wherever. I also will check in at random times, so that someone hears from me. I have found for me, that, and having the emergency information on the phone, then if I were to have a seizure, someone can find me, and this actually has happened on multiple occasions, and saved me. I also have to say, I like the alexa idea because, I actually had an episode where I needed to call the hospital, but couldnt. This became key in reaching help, so, a plan in place is always better than no plan in place. It can always be tweaked, but, I highly recommend something. I know some people have animals, or service animals, as they are also a huge assistance in a plan. I hope this is helpful for someone. ♥️

I have the seer app installed on my phone. I have used it in the past but began again in February when the dosage of my lamotrigine was reduced. It gives insights into your particular seizure risk.

I also wear a Samsung Galaxy 4 smart watch where I monitor my HR stress level ekg sleep.

I also have 2 dogs pitbulls who are my legal ESAs. One of them will periodically stay close to me so I often wonder if he senses something I do not. He is a pitbull - heeler

That is something I have to check out! Thanks for sharing.

@closetmonster93 This is so helpful. Thank you for sharing!