Everyone was worried about me all of the time. Joel would call me on each of his breaks to make sure I was alive. My mom would text me until Joel was home to make sure I was okay. It was exhausting for everyone. I wasn't allowed to shower without someone being home. I was lucky to be able to eat, among other restrictions. I was trapped in my own home.
One of the things I learned after the VNS implant was this thing called SUDEP. It sounded like a disease. So I asked what the hell that was. It stands for Sudden Unexpected Death in an Epileptic Person. AWESOME! I was better off not knowing about this. Let's add paranoia to the package. I was afraid to go to bed or take a nap.
Every year approximately 600 people die from SUDEP. Yep, 600 out of about 3 million people who have seizures. I know, the odds sound rare. Those numbers give each of us a 2% chance of falling victim to SUDEP. Yes, it's low but anyone can be in that 2%.
My mom did some research to help all of us worry a bit less. She found the Danny Did Foundation. This foundation was started by the Stanton family in Chicago. They're goal is to provide more awareness after their son passed away from SUDEP. Absolutely heartbreaking! This family took their tragedy and began to help others.
Boy, did they help me! I received this snazzy SmartWatch from the Danny Did Foundation. Since I'm poor, they generously approved a grant for my watch and subscription. They asked me to take some pictures with my Smart-Monitor watch since I was a recipient. I was more than happy to.
Here's how my Smart-Monitor watch works. It's like a fit bit combined with a seizure alert. There are adjustable settings for duration and sensitivity. You can change it to fit your seizures. For example, if I set mine to go off after six minutes of an abnormal motion, then it will send a text notification to my eight contacts.
It also will give my location in the text. If I don't push the button to cancel the abnormal motion, then my mom gets an automatic call and if I'm not responsive, she calls 911.
I was able to have some independence back. I showered. I cut food. I went for walks. I rode my bike. It gave my loved ones peace of mind. That was the most important thing. I could only handle so many texts and calls in a day asking if I was alive or okay. I wanted to be able to chat about other things you know?
It also will give my location in the text. If I don't push the button to cancel the abnormal motion, then my mom gets an automatic call and if I'm not responsive, she calls 911.
I was able to have some independence back. I showered. I cut food. I went for walks. I rode my bike. It gave my loved ones peace of mind. That was the most important thing. I could only handle so many texts and calls in a day asking if I was alive or okay. I wanted to be able to chat about other things you know?
How about my watch accessories?? My mom's cousin DeDe (so my cousin) is a fabulous photographer and makes these awesome bracelets!
My lava stone is to make me grounded, calm, and stable. God knows I need those. The turquoise opens communication and gives a sense of wisdom when making decisions. She's so thoughtful and knows what this soul needs! Thank you DeDe! 💗
The Danny Did Foundation, really helped save my sanity. I hated feeling like a toddler. A life time of gratitude to the Stanton's and the foundation team. My mom makes donations as she can from the both of us. She's also made crochet items for their auctions to raise money for the foundation. If you can, donate. It's a very epilepsy necessary foundation. If you think you'd benefit from any of those devices they have, shoot them an email! They're such kind people.
Thank you Mom and the Danny Did Foundation!
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