Begging creators and developers to use this tool to see if there are harmful flashing effects. I’m sick and tired of people slapping a “strobing effects” warning up front and calling it a day. #epilepsy#accessibility https://trace.umd.edu/peat/
The most egregious example of this is video essay editors using literally flashy effects that make their videos impossible to watch. You chose to use those filters. Stop it.
It's #Epilepsy Awareness Month (according to Epilepsy Ottawa, at least!). In previous years I've done more to share things about myself, or epilepsy in general. Been a bit of an empty well this year. Well - I am still on my way to being seizure-free for 1 year. I was 2+ years seizure free until June last year, when I missed a dose of my medication and had a seizure on the softball diamond.
Anyone in my extended network have knowledge about or experience navigating the US healthcare system with regards to diagnosis and treatment of progressively worsening epilepsy?
I've got a bunch of knowledge around healthcare and feel that my brother-in-law is receiving substandard care given his current condition, but I'd like to bounce it off someone with experience in this specific area before I start getting upset with people.
Happy to share our #NewPaper on experiences of patients undergoing #epilepsy surgery, comparing traditional resective surgery to #NeuroPace responsive neurostimulation, using interviews and ethnographic observation of patient visits. First, we documented circuitous treatment paths described by patients and caregivers as "winding," "confusing," and "chaotic." In two of our participants, continual ECoG recordings from an implanted RNS device enabled the detection of a single seizure focus for subsequent resective surgery. Second, RNS was perceived with greater safety, viewing the act of "putting in" a device as reversible in contrast with the irreversibility of "taking out" brain tissue in a resection. Third, evaluation of postoperative course reflected different aims and expectations, with resection understood in "all-or-nothing" terms such that any post-operative seizure was perceived as a failure, while patient expectations in RNS were more incremental. #neuroethics#OpenAccess at https://www.sciencedirect.com/science/article/pii/S152550502400088X
Particularly low day for #epilepsy - spent most of it with Willow watching true crime on Netflix because reading was too hard and audiobooks make me daydream.
The cats have been driving me mad the last few days running round after each other but today they were actually relaxing too be around which I needed. Thanks girls #catsofmastodon#cats
#MastoAide
Ma fille viens de faire une nouvelle crise d'épilepsie, les précédentes ont amené la neuro à augmenter la dose de médoc sans examens supplémentaires. Cette fois elle s'est ouvert l'arcade.
Elle aimerait un rdv à la salpêtrière où il y a des spécialistes je crois.
Vous avez des tuyaux là ou ailleurs. ?