Okay, so I know I usually post all the fun stuff, but today, I’m keeping it real. Not everything is sunshine and rainbows.
So, let’s talk about dystonia for a sec. Basically, it’s this weird neurological thing where your muscles start freaking out. Like, they contract on their own and you end up in all these weird positions, and sometimes it even hurts. Imagine your body just doing whatever it wants. Not cute.
I am a Dravet Warrior , and a lot of Dravet Warrior end up with Parkinson’s-like symptoms. Sometimes it turns into dystonia. Like, it’s a thing that happens over time. At one point, I could walk with crutches, but then dystonia took over and it was like… nope, not today. Now, I can still walk if I have someone helping me, but it all depends on how bad the dystonia wants to be.
And, yeah, I won’t lie—it’s painful. I don’t always notice the little tremors, but when a full-on dystonic event hits, it’s like everything sucks. It’s not as bad as it was back in 2017 when it was happening all the time, but it still messes with me sometimes. It’s not fun, especially when I have those days where I can’t even walk or stand, or like, go to the bathroom.
Usually, Poppy’s the one who has to carry me around when it gets really bad. Sometimes it clears up on its own, but other times I’ll have a seizure before my body decides to chill. 😩 Anyway, here’s a little clip of one of my worst days so you can see what it’s really like.
So, this is why I’m in a wheelchair now. And since they say I’m “non-verbal” (which is kinda rude, TBH), I speak Abigaileese, lol. Seriously though, I use this super cool device called a Tobi-Dynavox. It helps me talk when my hands aren’t being nice (thanks, dystonia). I just press a button, or if my hands are in one of those crazy positions, I can use my eyes to pick words. So yeah, even if it’s not “normal” talking, I can still say what I want. Pretty cool, right?
But don’t worry, I’m not here to just complain. Poppy’s trys, and he’s put me on some meds that are actually helping. We’re also looking into seeing a movement specialist to see if they can help more. I’ll keep you guys posted. ✨
Oh, and just so it’s not all doom and gloom, Poppy’s been taking me to Disney a lot. Like, 4 out of the last 6 weeks! He knows who the real princess is, lol. 👑✨
And the picture at the top, it me supervising at Dolphine Cafe.
abigaile.org 