It is deeply touching, to have heard from two folks, who have experienced epilepsy in their lifetimes. They are brave, and my heart goes out to Eric and Fionnuala, for their kindness to help people understand what it is like. Millions of people worldwide are affected by epilepsy, and research institutions like the Vanderbilt University Kennedy Center, are working around the clock to find a cure. May God provide them the guidance and the road necessary, to make this discovery, that so many are waiting upon. Improvements have been made through medicine, devices such as VNS implants, and other advances. Yet until a cure is found, there should be no relaxing, as those who suffer from seizures, and those who love them, are deeply affected.
The past few weeks, both Eric and Fionnuala have been kind enough to have shared what it is like, to have seizures. After reading their stories, and also I hope by being touched by their willingness to describe these painful events, I hope you'll support the Vanderbilt Kennedy Center in their efforts. This is not easy reading material, nor was it without pain for them to describe what epilepsy has brought to their lives. God bless you both for being so open. To those who deal with seizures, we will find a cure. We are on the right path, and this battle is going to be fought with love, rather than anger, courage rather than fear. These two folks embody both love and courage, and here is how they describe what goes on while having seizures.
Fionnuala described, "when coming to, not knowing anyone." This would include folks she's been around for years, and has deep love for, such as her husband. In her words, "I don't know where I am, I'm scared, and I feel lost." She sometimes hits whoever is close to her, because she's frightened. She can't move. Her descriptions of "legs being weak and not speaking well," are heartwrenching, and apparently she speaks in jumbled sentences. After these seizures she sleeps for twenty four hours, and then she is okay for the most part. However, a full recovery usually takes a couple of days.
Eric talks in bold language as well, to describe these experiences. He has dealt with petit mal and grand mal seizures, and felt "extremely tired and weak" after them. This was especially true, after the grand mals, because every muscle in his body would be used. These would include muscles that normally don't, and he said "I had to fight to say the right thing, to do the right thing." During his most severe of seizures, he would be able to see and hear everything going on around him. He even sees "how people are reacting," so this is remembered after the seizures, which would knock him down for long periods of time. For two young people, this is troubling, and for our children even more so.
I would like to personally thank Eric and Fionnuala for this courage, to describe events that are painful, in the hope that it will help someone else. Tony Dungy, who was an NFL coach and now writes book, says something so true about what they have done here. That is "your life is of significance, if you have served your fellow human beings." They have done that here, as so many parents and caregivers of those with seizures, may now have a better understanding of what is going on during seizure activity. God bless both of these kind folks, for letting people know what it is like firsthand. Many who have children who cannot verbalize what it is like, now have more knowledge of seizures. Thanks to both of them for helping so many, and may we find a cure for this menace immediately.
Interested in a cure for seizures? Here's where you can immediately help.
Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,
Mike
**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its toiletoctopus@gmail.com. Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."
With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.
Mike
**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its toiletoctopus@gmail.com. Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."
With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.
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