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“My life changed dramatically after I was diagnosed with Epilepsy.”
Everyone that starts having seizures and is diagnosed with Epilepsy as an adult or teenager can relate to this statement in one way or another.
Stories are told of how, at some point, things that could be done without much thought or deliberation, such as taking your kids to school or going for that baseball game, can no longer be done.
Your driving license is taken away, and your body needs to adjust to a lot of different medication. Everything, as you used to know, changes, and nothing much can be done about it.
Kirsty, a 44-year-old wife and mother, who also works full-time, had her life completely changed when she was diagnosed with Epilepsy. She tells of how she has been able to regain her sense of independence and confidence in doing the things she loved to do with her Embrace Watch.
For her, spreading epilepsy awareness means letting people know that you can still be independent and do the things you normally would if you have a proper monitoring system.
I am a 44-year-old mother and wife who works full time. I love nature, long walks, and spending time with family and friends. I used to love rollercoaster rides, being out and about, and travel. My life revolved around sports events, being mom’s taxi, and working as a Personal Assistant and Administrator.
I was diagnosed with Epilepsy at the age of 38 after being found unconscious in my driveway. I have tonic-clonic seizures both during the day and whilst asleep. Most often they come without warning or sometimes a few seconds of warning before they hit. My postictal state can last from a few hours to an entire day depending on how many seizures I have. I have tried a number of combinations of epilepsy medication but none helped control my seizures.
My life changed dramatically with the diagnosis. Other than the difficulty of adjusting to medication and the changes required in line with the diagnosis, the logistics of being a mother and a wife changed the dynamics of our family immediately. I have to be 12 months seizure free before being allowed to drive and with the seizures being so unpredictable it isn’t safe to go out on my own.
Not being allowed to drive is frustrating and a financial burden when I have to take a taxi if my husband is not available. There’s the anxiety of not knowing when the next seizure is going to hit, if it will self-terminate, will I be safe or will I end up in the hospital again? So many things. I have developed severe anxiety, which means if I do go out, the fear of having a seizure takes over.
The Embrace has changed my life
I lost most of my independence. It isn’t safe for me to go for walks or do sport. I couldn’t really go to functions because of the noise, lights, and general bustle which is amplified for me.
My daughter saw the Embrace watch when she was a leader at a summer camp and did some investigating. When she sent me the link I wasn’t keen at all at first and had a lot of questions. I emailed Empatica support almost daily.
The Embrace has changed my life. I can now go for walks or out without my husband knowing that should something happen, he will know exactly where I am. This alone lessens the anxiety I feel. I can check the app and see exactly how many seizures I had and at what time.
Last week, I went to the restroom at work and had an episode of seizures. My husband got the Alert call and started to make his way to my workplace. When a colleague went to the restroom, found me on the floor and phoned my husband; he was already in the parking area downstairs and was with me in minutes.
We have no idea how long I would have been there, on the floor seizing on my own — thank goodness my Embrace spoke for me when I couldn’t. If I had been in a busy public place at least I’m sure my husband would have known if something had happened.
Usually, I would be taken straight to the hospital and my husband would find out hours later once I have been able to identify myself. Something that did come as an unexpected surprise, is that last week I had a panic attack and the alert picked it up and contacted my husband. When he phoned I could assure him that I was fine and he didn’t need to come and see me.
If you suffer from Epilepsy — I would highly recommend you get an Embrace.
I have recommended the Embrace to a few people. One of whom told me they ordered theirs last week. If you suffer from Epilepsy I would highly recommend you get an Embrace. I think you will be pleasantly surprised. It will give you and your family peace of mind and even assist your doctor to establish if there is a pattern or not.
I also want to say that for the people who feel it is unfair to pay a monthly subscription for the Alert service, would you expect a mobile phone without having to pay to make calls?
The people who designed this tool understand epilepsy and somehow they have to cover the costs of the alerts. Also, updates fix any glitches that crop up because they are continually working on improving the Embrace.
The Embrace Watch is really helping me gain confidence again
I am now starting to be more confident going out on my own again. I hope that in time when my epilepsy is more controlled, I will get back to normal exercise and doing things I love like traveling, swimming and spending time with my family without the concern of seizures.
The seizure report was most helpful when I saw my neurologist last week because I could just show him on my phone and he could see exactly what had happened.