Transfemme Moth 2

And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…

Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.

As someone who has epilepsy and used to have several grand mal seizures a day, I’d also like to add that “offer help” can range anywhere from keeping the person calm to explaining to them where they are and what they were doing to even just telling them they should sit and rest for a while longer (lack or coordination is common, and it can be hard to walk straight or see clearly).

It’s okay for them to take up to a half hour to fully regain their bearings and sort out what they were doing prior to the seizure. Just answer any questions calmly and be there for support.

If they come around and you start to panic or shake them or ask them what the heck is wrong with them they are going to freak out and panic too.

I cannot stress it enough that this is bad.

DO NOT CALL THE POLICE. I’m dead fucking serious. I had a grand mal in public once and the POLICE were called and imagine coming out of the seizure, feeling like you got smacked in the head with a sack full of bricks, confused, dazed, in desperate need of some sugar to boost low blood pressure and some DIPSHIT has called the police and I was being threatened with being ‘drunk and disorderly’. It took a phone call to my doctors office to get them to back off. The police cannot properly deal with sick people. 

Offer help can be:

assuring person where they are/what time it is

getting them something to drink if they can; seizure burns so much energy and does cause a blood pressure drop

getting them safely to transport or a carer

getting them some dignity like a blanket/towel [loosing control of your bladder and bowels is fucking horrifying]

ensuring they have a way to get home. Someone who has just had a seizure should NEVER DRIVE straight after

calling emergency services if you notice any of these symptoms because they may have stroked out.

Why you shouldn’t put anything in someone’s mouth: they will choke. Yes, they may bite their tongue but I can assure you it’s less traumatic than cracking your jaw on someone’s greasy wallet or choking on a spoon.

Because PNES seizures aren’t caused by the same thing as epileptic seizures, they can look similar but people can be semi-conscious during them, generally do not lose full control of their bodies (bladder/bowels and other reflexes remain), and importantly, they can last longer than 5 minutes (even hours) without causing long-term damage.

The “do not call the police” point was especially vital for them, because people with PNES are more vulnerable to medical abuse by professionals who think they are “faking” because the seizure isn’t epileptic, and a person with PNES may have medical trauma from being treated cruelly by doctors, family members, etc. while seizing in the past. This study looked at stigma around PNES (also called functional seizures; I’m using PNES because its what my coworker called it):

Literature suggests that it can take years for patients to finally get a diagnosis of FS, but once they receive the diagnosis, it is often met with negative stereotypes and perceptions that lead to stigmatisation and treatment resistance. […] Moreover, with 34 of the 70 included data sources reflecting HCP [healthcare professional] stigma, one of the main themes that arose from this review illustrated the importance of HCPs’ acknowledgement and acceptance of their role in both perpetuating and reducing FS stigma. From our review it became apparent that HCPs’ negative attitudes towards patients with FS persist in the health community, often because of a lack of knowledge, general awareness, understanding and medical training with regards to this disorder

For my coworker, they expressed that one of the most important things for them was to just not be alone, to have someone verbally saying they were with them and it would be alright, and then to be supported according to their needs once the seizure ended. Their seizures were often triggered by stress, or from trauma triggers, so being treated with compassion, having their body respected, and having a calm environment during and after the seizure were very important.

#Repost @gogreensavegreen

You might be more than one. You might be different ones at different times. 🫶🏽🫶🏽 you might not be one of these. There are more roles 💪🏽 but this is an amazing intro.

You can’t just like the idea and envision yourself in one of these roles you have to figure out how to be about it ♥️🫶🏽

It's the wikipedia image??? How big could it be

What