There are books like A Mind Unraveled that give perspective from someone with Epilepsy from when he first was having spells, when he was told it was seizures, etc.
What we need is the best sources (which he did not have then) that can explain in Plain English the realities of Epilepsy (compared to all of the myths that the media have been telling them for at least the last 60 years). We need a Epilepsy 101 source that we can get out to educate people who are actually interested in learning the… read more
there is a youtube channel that explain a little bit about epilepsy and what it is feeling like ... in song... https://www.youtube.com/watch?v=p6Oxxt_a86I
We just need to find the best assembly of materials that we can get out using social media to do what the Epilepsy Foundation and the like have failed to do, to help the common people of the world to better understand Epilepsy and those of us that have it. Until we can succeed in this, we are going to have many of them who view us as crazy, rejects or worse, think that we have something like leprosy or even a strand of Covid-19 that we can give them by being in their presence. If we can help get the word out on the various social media sources and ask friends and family to pass our message further on, then maybe one day (perhaps after Covid-19 is eradicated) more people will choose to understand us.
As I posted on my home page (or whatever it is called here), people need to understand the different signs of a woman having a heart attack -- in contrast to the ones that are all over the place about the primary signs of a man having one. And they also need to know that seizures come in many different forms beyond the most dramatic ones that have been in television, movies, etc. for at least a half century. This is the reason that I am looking for simple sources: I know, because my former boss (director of Treadwell Library at Massachusetts General Hospital was part of the committee of the hospital working on teaching doctors and nurses to use Plain English with patients, that the average American adult has the scientific vocabulary of a 4th grader. I don't know what is the case in your home nation. Do any of you?
Am about to read the sacred disease, my life with epilepsy. A book I got off of Amazon about a mother who was practicing medicine to become a doctor and had a family and she had epilepsy. It's written by the woman herself who kept her epilepsy a secret while practicing medicine and becoming a pediatrician and advocate for epilepsy. Right now I'm reading the upward spiral, using neuroscience to reverse the course of depression one small change at a time which I also got off of Amazon and a couple others.
Thanks for your post~ and thanks to thta friend of yours who suggested that
"Doctors "speak PLAIN REGULAT ENGLISH"instead of "Doctor Speak" to their patients~ Some of us understand "Doctor speak" but some don't !
BUT the most important thing "is that they listen to us & don't RUSH thru
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