Why Neurotech Needs Lived Experience with Mark Slater

I mean, it's funny, isn't it? There's such a consistent theme where people are terrible at-- People in the scientific community are terrible about talking about -- we're both doing this.

We're struggling to say the actual words.

Terrible at talking about the actual indications of technology or the patient population, or to the patient population even as well.

I mean, as someone who lived with epilepsy from a young age, what was that...

Like, did you always get that sense that people didn't quite understand it, even in the medical community?

Yeah.

Che, that is a great question.

So when I was diagnosed, it was 30 years ago, and I don't think the question of understanding even struck me, to be honest.

Uh, just in the, the way they treated seizures back then was, you know, they tried a few different, you know, anti-seizure medications, and if one controlled the seizures, then you were kind of off out into the world.

And so I think sort of understanding epilepsy is just, it didn't even cross my radar at that time.

But that is something I c- I, I, do talk about quite a bit as far as the, the lack of, you know, social, emotional care, I guess, around an epilepsy diagnosis.

I mean, especially I think for, for young people, it, it should be thought of as essentially a trauma, right? Just in that-

Yeah

... you're radically divorced from your sense of reality.

You know, kind of you lose control of your body, you lose control of your ability to drive, your sense of sort of who you are and your future, and then you, you deal with that however you deal with it.

I- in my case, it was, you know, telling my parents I was, uh, going to take a train around America to see America.

Uh, it was actually me with a backpack, with a prescription for Dilantin in it, a skateboard, and $30, and a one-way train ticket to San Francisco.

Amazing.

So I ended up hitchhiking all over the country, making every bad decision you can imagine.

And, um, I mean, I ma- I made it back, and made it back, and went to college, and it all worked out.

But, uh, for a lot of people, I think that taking control is, you know, it can be anything from suicide to even worse choices.

Um, so it's-

Mm

... yeah, just this enormous gap in care.

Yeah.