Aly Jones

My Art's from my heart. If someone connects to it, it's worth it. I vet potential followers. #BLM #MUFC #StandWithUkraine 🇺🇦 #EpilepsyWarrior. 💜

[Aly Jones @AlyRJ]

Quite possibly the hardest painting that I've ever done, I've put it off for so long because I thought it'd be hard but it was more emotional than I imagined. I hope that this helps others to express their inner demons in whatever way, in the hopes that it brings healing. 😥❤🙏

[Robert Slater @Mistyrobert]

@BrainAblaze It's hard with it being one of those invisible things for sure. Epilepsy affects things on a daily basis, to one degree or other, yet people wouldn't know by looking at you.

[Aly Jones @AlyRJ]

@LoriJaye1 @BrainAblaze That's unbelievable! Great response though!
I've been asked "why you? I mean, you've always been sporty & healthy?
My issue is that I look like I've been in brutal fights because of my tooth & the cuts on my face, scalp, & forehead.🤦🏼‍♀️💜

[Brain Ablaze @BrainAblaze]

"You don't look like you have #epilepsy" is not really a compliment. -- Epilepsy can affect anyone of any age, race, ethnicity, sex, or gender. #EpilepsyAwareness

[Aly Jones @AlyRJ]

@patchcomedy310 I've thought about that being a potential trigger for me but never tested. That's why I stopped wearing my hearing aid. How the hell are you supposed to just leave or stop listening to what's around you? Maybe carry ear plugs with you, I have them with me all the time. 💜

[Patch @patchcomedy310]

Doc thinks a certain sound frequency is responsible for my seizures when not under medicated. If so, that’s a pretty easy maintenance fix! #EpilepsyAwareness

[Brain Ablaze @BrainAblaze]

DYKT studies have shown that around 20% of people with #autism also have #epilepsy, and vice versa? While the exact reasons aren't fully understood, some studies show that both conditions seem to share some underlying brain differences. #EpilepsyAwareness

[Brain Ablaze @BrainAblaze]

What tips would you provide a person with #epilepsy looking to make their home safer and reduce the risk of injuries during a #seizure? #EpilepsyAwareness

Here's our list:
https://t.co/MHjfCwA29Z

[Aly Jones @AlyRJ]

@BrainAblaze I sometimes sleepwalk & end up with injuries. I faceplanted my bookshelf about 2ish weeks ago & only knew that's what I hit because my ferret cage had moved from the fall & the blood on the bookcase. I've also cut my head open, dislocated my shoulder, & broken my nose.😣🤦🏼‍♀️💜

[Aly Jones @AlyRJ]

@BrainAblaze Tongue & cheek bites, lethargy with my distinctive headache & confusion, only twice I've peed during a nocturnal, which doesn't happen with many of my seizures anyway.🤯💜

[Aly Jones @AlyRJ]

@patchcomedy310 @CheriGavasto @BrainAblaze In all seriousness, it's amazing that you're at a point where you can push yourself out of your comfort zone by doing new things.
You'll do amazing, of that I have no doubt. 😊🫂💪🫶💜

[Aly Jones @AlyRJ]

@patchcomedy310 @CheriGavasto @BrainAblaze If your meds can get you through watching your sports of choice, you can do anything!!!😆💪
I didn't make it through the last @ManUtd match, & that was just a tour friendly!🤦🏼‍♀️😂 I watched the All-Ireland Hurling final last week, 1st time I've watched the sport. It was epic!💜

[Aly Jones @AlyRJ]

@patchcomedy310 @BrainAblaze Ahhh, I'm easily confused at the moment... It's not just because of the #epilepsy, I'm blonde too! 🤯😂. And it's easily done when writing, rather than talking.
Wow! Sounds like you're moving in the right direction and towards a bright future with amazing things to come! 🙏🫂🫶💜

[Aly Jones @AlyRJ]

@patchcomedy310 @CheriGavasto @BrainAblaze 2 weeks off 16 months!?! That's incredible. I love hearing that you're kicking #epilepsy's ass! Smashing it! You'll get to 10 years & surpass it, I'm sure of it!
You're an #EpilepsyWarrior for sure!
🙏🫶🫂💜

[Patch @patchcomedy310]

@AlyRJ @CheriGavasto @BrainAblaze Talked with my doc about strategies to pass the depression spells. I’m good & 2 weeks away from being 16 months free again. 😅

[Aly Jones @AlyRJ]

@patchcomedy310 @BrainAblaze Well, I hope & pray that you smash that 10-year seizure free streak & the meds continue to work well beyond that.
So you get a constant headache with Cenobamate? If you struggle, I'd try Briviracetam if Keppra worked, but couldn't cope with the side effects. 🫂🫶💜

[Aly Jones @AlyRJ]

@patchcomedy310 @BrainAblaze Good to hear that you're on a better combo of meds for you. The sedative effects are crap but better than having the hell of mental health effects.
Lamotrigine's the only med that I don't get side effects from, apart from a weakened immune system, which they can help with.🫂🫶💜

[Aly Jones @AlyRJ]

@BrainAblaze The background of the one did with sunflower wrapped in the #epilepsy #PurpleRibbon is turquoise to honour all who battle #mentalhealth due to meds, with gold over the top that disappears or is brighter in certain lights & angles as a symbol for invisible disabilities. 🫂🌻🫶💜

[Aly Jones @AlyRJ]

@BrainAblaze They should have a sunflower because they are a symbol for invisible/unseen disabilities. It's why I painted these...for all those who battle an invisible/unseen disability! I even did a chip on the vase as I have been left "chipped & cracked" from #epilepsy injuries.
🫂🫶💜

[Brain Ablaze @BrainAblaze]

Today is the last day of #DisabilityPrideMonth! Did you know that the white stripe in the disability pride flag represents invisible disabilities like #epilepsy? #EpilepsyAwareness