#autonomic dysreflexia

[space-1z-cool]

Happy Dysautonomia Awareness month. To all people with dysautonomia, i hope your dysautonomia makes you less aware of itself this month.

to all chronically ill and disabled people ever, (gives you so many spoons), here. for these trying times.

also i hope ur able to get a treatment plan that works and doctors that listen. o7

[nonsensi-cal-lyrics]

Today on: what BS is AD pulling? My J extension cap was stuck in my waistband making me nauseous. The more ya know lol

[limbiclown]

Me

I can’t breath

[limbiclown]

The doctor gets to make a bunch of money and go on vacations and stay known for being the “best” and spread misinformation to people about their bodies his whole life while I am stuck here in bed trying to figure out how to ease the pulsing pain spreading through my body that originates from my spine that he fractured (uncalled for) and gets inexplicably worse when I have to pee

[five-thousand-loaves-of-bread]

one my friend n mutual @aleswell write really good post about how many disability talk now assume everyone disabled ambulatory can walk long distance invisibly disabled low or even no support needs, n they do that BY ignore n exclude n hate on visibly disabled people or people who not able do those things n kick us out of accessibility literally meant for us or make those things inaccessible for us like wheelchair seating in concerts

n one example he give be group of visibly disabled people who got hate for “exclude invisibly disabled people” by… being group of visibly disabled people n dare exist online n post about it n talk abt disability.

that group call handicrapcrew on instagram n maybe tiktok too, they really funny (their humor may not be for everyone), n they post funny response to this but it sad n upsetting that they got something like this in first place

n that hate comment made me really upset n mad n there two point that am really wanna talk abt

it quite bit long n never know how easy read my posts be so make into separate post

1. their (edit: hate comment not aleswell) list of invisible disability include autism it always include autism it always autism. autism this autism that n am literally sit here as visibly disabled person whose disability visible (part) because visibly autistic.

it always certain invisibly disabled n lower support needs autistic who never met anyone different from them ever who spread this shitty idea that their reality = everyone reality, from their autism = everyone’s autism to they’re autistic = whenever disability be talk abt it always end up only be about (lower support needs invisible) autism.

n people listen to them because they loudest they have better language ability they able make self look n sound appealing n up to standard

(autism CAN be invisible disability it IS NOT invisible disability n people who no nuance call autism invisible disability never care abt this)

2. these people always talk about how like shouldn’t assume shouldn’t assume someone not have disability because can be invisible but their brain short circuit n all that go out window moment they meet someone with visible disability.

when you visibly disabled, part of disability that be visible become your whole disability become the whole you.

even if visible symptom / aid only part of that disability, that now whole of it, people only see that (n not see it at same time), our less visible struggles n symptoms n needs erased, sometimes BECAUSE (how people treat) visible part of that disability.

wheelchair user with spinal cord injury (SCI) be treat as like this most understood most seen disability so let use that as example. people only see the wheelchair they think not able walk = only symptom of SCI, they not see the urinary n bowel incontinence (which sometimes quite visible, re: catheter bags) or weakness or spasms or pain or autonomic system dysfunction autonomic dysreflexia (which CAN KILL. do u as reader know what it is) or million other symptoms.

because we visibly disabled we also assume to not have invisible disabilities. sometimes comorbid conditions associate with our main disability that make us visibly disabled. sometimes this invisible disability actually our main disability n not the visible one. sometimes we just happen have whole separate unrelated disabilities that happen be invisible.

somehow because we visibly disabled we give up right to have other invisible symptoms n other invisible disabilities? (rhetorical)

how do you know that any of those visibly disabled people in handicrapcrew not have invisible disabilities?

aren’t you (general you) one who so loud abt not assuming because someone may have invisible disabilities?

n as always whenever talk abt these stuff there always people (…whom this post be about) talk abt how am be ableist to invisibly disabled ppl n people like me n posts like this be why [those “advocacy” at expense of visibly disabled ppl] exist n be needed

n let me just say have no issue with invisible disability itself, have no problem w invisibly disabled people by default (even have many invisible disabled friends🥺, LOL. yes that wording be on purpose). invisibly disabled ppl deserve have advocacy. but not advocacy that throw everyone that not them under bus.

[limbiclown]

Not to be controversial but my doctors were fucking around not figuring stuff out so I googled my symptoms and went on a several hour online tangent and figured out I Probably* have autonomic dysreflexia weeks before the doctors did. I went to an appointment and after a few hours someone finally thought of it and I was like “yeah I figured that out like three weeks ago…”

Unless I don’t have it then we’re just all wrong lmao

Don't google any symptoms. Ever.

[cripplecharacters]

Hello! I intend to write a main character who is a wheelchair user due to an accident that was fatal to others but not them. I have a problem with deducting the limitations of the disability. Theyre an artist but after the injury they lost some mobility with their hands and since theyre a main character i will give them a romantic interest but im not sure how to make the genitelia function. The hands being limited mobility is important but also their ability to have sex is too. Is this possible or if someone has partial feeling in their hands the genitelia also has problems or can it function fully, would there be other problems regarding sex? How long would the physical therapy period be after the injury? Would they be able to use a regular computer mouse easily or would they need another device? They dont live in an accessible state so what type of chair would they use? Can they transfer from their chair by themselves perhaps? Would they experience chronic pain anywhere in their body or would there be no feeling at all? I want to write the character right so i would appreciate it very much if you answered my ask, thank you

Hey!

It depends on what the accident actually did. I'm gonna assume quadriplegia since that's what it sounds like, but I could be wrong. Since we don't currently have quadriplegic mods I'll just answer for the technical parts but if this is an important character to the story I recommend you get a sensitivity reader if you want to get it right and not just "not medically incorrectly".

Is this possible or if someone has partial feeling in their hands the genitelia also has problems or can it function fully, would there be other problems regarding sex?

Generally speaking, most quadriplegics will have their genitals affected fully or partially depending on the completeness of their injury. However, working 100% as before the injury would be rare.

The one problem that affects all quadriplegics (and some paraplegics) is autonomic dysreflexia, which is essentially a sudden medical emergency caused by a blood pressure rise from too much stimulation. Genital stimulation could potentially cause this and your character would be aware of if they have any knowledge on their condition. Another problem that will affect the extreme majority will be absent/significantly decreased sensation. That doesn't mean that they can't have sex, but they might not feel anything at all there or not feel enough for the entire thing to be pleasurable. For more specific problems, you'd have to consider what set of genitals your character has. People with penises are more likely to cause issues that complicate things a lot (complete erectile dysfunction, inability to ejaculate), than people with a vulva (inability to lubricate). The one exception would be if they have vaginal spasms, which might make penetrative sex physically impossible and/or very painful. Again, this doesn't mean the inability to have sex in general, just requires some changes. Changing focus from genitals to other erogenous zones etc.

You can read about it more here and here. This is also useful but long and uses medical language. Just be aware that it doesn't really factor in trans people and potential differences people on HRT may have.

How long would the physical therapy period be after the injury?

This depends on a lot of things. Depending on what you consider physical therapy, they might do PT indefinitely. SCI is a permanent injury and if it's complete, PT is good to keep it from getting worse (e.g. preventing muscles from contracting), and if it's incomplete then it can also be about potentially restoring more function (how some paralyzed people are eventually able to walk again, it's not a miracle, it's PT). PT can be the in-patient kind that they would probably spend a few months in, out-patient which could be months to a few years, and simple at-home exercises that they could probably do indefinitely (as mentioned), for example passive range of motion exercises.

If the character has specific goals, they will probably go to therapy longer for that specifically. It could be PT, but it could also be occupational therapy. You can read more here or here.

Would they be able to use a regular computer mouse easily or would they need another device?

They probably could. (I recommend this guy's channel for other similar questions like this, he explains them very well).

They dont live in an accessible state so what type of chair would they use?

The type of chair would depend more on their actual needs than the accessibility of the environment. However if you want to specifically factor that in, a light-weight wheelchair would be better so it can be physically moved up the stairs, transported by car, etc.

Can they transfer from their chair by themselves perhaps?

At the start almost definitely no, after some rehab, maybe. If you have your character's level of injury figure out you can search (e.g.) "c6 sci transfer" and see how various people do it. Some can do it by themselves, others need a sliding board, and many can't do it at all. It also depends on factors like weight and age.

Would they experience chronic pain anywhere in their body or would there be no feeling at all?

They would definitely experience at least some chronic pain. It'd be very unusual if they didn't (without being strongly medicated). They'd almost definitely have back pain at the very least.

These two are also not exclusive - you can absolutely have pain in areas without actual sensation (I do). It's because of nerve damage and the nerves firing off incorrectly, so a light touch could be unperceivable, but cause shock-like pain.

I know this wasn't one of the questions, but they could still be an artist as a quadriplegic. They could potentially paint with their mouth or tape a brush to their hand in order to draw.

Hope this helps,

mod Sasza

[crippled-peeper]

Autonomic dysreflexia is a condition characterized by sudden changes in autonomic functions such as blood pressure, heart rate, and body temperature. It most commonly occurs after spinal cord injuries (SCI) at the T6 level or higher; however, it may also occur in individuals with other types of neurological conditions

[wolffyluna]

It's a shame that I'm probably not going to be able to make anything for disabled whump/h/c month, because I just learned about autonomic dysreflexia

And of course, my first reaction to learning about it was sober and sympathetic, but my second was "oh boy, that would be good for an h/c fic"

Autonomic dysreflexia is a problem that's pretty common with spinal cord injuries, where sympathetic (? unless I've got it the wrong way round?) nervous system signals can travel below the injury, but parasympathetic signals can't. This means that one of your nice homeostatic negative feedback loops instead becomes a positive feedback that can kill you. Namely: something hurts below the level of your injury. You can't feel it. But it will shoot your blood pressure sky high until you can work out what the problem is and fix it

The thing is, sometimes the problem is "you have a pressure sore/ bruised knee from banging into something/ etc." But sometimes the problem is "full bladder" or "being gassy" or "the seam of your jeans is digging in weird." You just kinda. gotta figure out which is which. and often you'll learn what the common triggers for you are, but. if you fuck up, you could die.

Anyway, blorbos this potentially should happen to:

Wen Ning (normally I am Wen Ning TBI rights, but I guess I can be Wen Ning spinal injury rights?)

Mithrun (it'd be an AU, but it is a ~body awareness problem that I think could be an interesting AU for him?)

WEI WUXIAN. (it's a problem best solved by 'good self care skills' and 'treating the emergency that happens all the time as an emergency.' Wei Wuxian would be so bad at handling this.)

[smalife1234]

Our newest video! Has many things that happened! It's action packed and we would really love if you'd view it!

↓

https://youtu.be/eljWyi18ihY?si=bpJU9F0NLrLpMaD9

Img desc #1: shows Emmie overheated with her white long-sleeved shirt buttoned to help her cool down she is near a bed

Img desc #2: shows a skinwalker background image with the skinwalker circled with red text above it saying "Skin Walker Sighting" Doc seen left of the image is seen looking scared she is wearing a grey short-sleeved shirt there is a large red arrow seen in doc's hands pointing towards the skinwalker Emmie see right of the image is seen overheated she has a long-sleeved white shirt on. The shirt is unbuttoned. She is seen with her face red from Autonomic dysreflexia there is the white text just below Emmie's image and it says "+ overheating"

[nonsensi-cal-lyrics]

I think it's stupid and evil that cold can be a trigger for autonomic dysreflexia

[turbotaxevasion]

Happy Disability Pride Month!

In honor of the shift from LGBTQ Pride Month to Disability Pride Month, I’m going to bring awareness to some underrepresented and underinformed disabilities as a queer and disabled artist/writer. These are all disorders that I have come across among friends and acquaintances. Every disorder I discuss must have a clinical diagnosis in order to be treated. You should only be self-diagnosing if you plan on going to a doctor to confirm your speculations. Do not self-diagnose if you are not willing to confirm with a medical professional. This post is not to diagnose you.

Big Trigger Warning: Discussions of psychological disorders like E/Ds, depression, and personality disorders. 

Dysautonomia

Any disorder relating to the autonomic (involuntary) nervous system

POTS

I have this! It is a nervous system disorder that affects heart rate and blood pressure because your nervous system does not allow your muscles to properly circulate blood, especially through the legs. Some symptoms include elevated heart rate, chest pain, low or high blood pressure, fatigue, changes in body temperature, and dizziness or fainting. POTS is more common in AFAB people than AMAB.

Amyloidosis

Amyloidosis is a disorder that occurs when a protein known as amyloid builds up in the organs. Amyloidosis is closely related to dysautonomia and chronic pain syndromes such as Ehlers-Danlos Syndrome because of the comorbid symptoms. These symptoms include edema, purpura around the eyes, skin that bruises easily, and fatigue.

Frey’s Syndrome

A neurological disorder closely related to dysautonomia that causes excessive sweating while eating. There are very few solutions to this disorder and even fewer of them are known to work.

Mitochondrial Syndrome

Mitochondrial diseases occur when there are genetic mutations and deformations to the mitochondria in cells that directly influence how the organelle produces energy. People with mitochondrial diseases can have poor growth, muscle weakness, seizures, visual and / or hearing problems, learning disabilities, and may develop kidney, liver, or heart disease.

Autonomic Dysreflexia

Autonomic dysreflexia is a disorder that causes abnormal overreactions of the autonomic nervous system. Symptoms include elevated heart rate, excessive sweating, and high blood pressure.

Chronic Pain

Any disorder relating to long-lasting pain surrounding any part of the body.

Patellofemoral Pain Syndrome

I have this one too! Patellofemoral pain syndrome is a chronic pain syndrome in which muscles in the lower extremities are too weak to support patellar (kneecap) movement. Thus, the patella (kneecap) will not track right. this causes lots of issues with walking.

Scoliosis

I also have this one! Scoliosis is defined as a physical disorder in which the spine is not a straight vertical line. There is either an “S” or “J” curve in the spine, compressing it and causing sharp or aching back pain.

Temporomandibular Joint Dysfunction

TMJ causes pain and tenderness in jaw joints and surrounding muscles and ligaments. Symptoms of TMJ include jaw stiffness, limited movement and locking of the jaw, ringing in ears, and dizziness.

Myofascial Pain Syndrome

This is a chronic muscular pain disorder. Typically, this pain is confined to one specific area, such as the neck or shoulders.

Fibromyalgia

A chronic disorder that causes pain and tenderness throughout the body, as well as fatigue. People with fibromyalgia can also have depression, anxiety, and trouble with memory and concentration.

Ehlers-Danlos Syndrome

EDS is a group of disorders that affect connective tissues that support the skin, bones, blood vessels, organs, and other tissues. Symptoms of EDS include stretchy, translucent skin, loose joints, and chronic pain. 

Arthritis

Arthritis is defined as inflammation in one or more joints causing stiffness and pain. There are many different kinds of arthritis, each with different causes. These causes can include wear over time, infections, and underlying diseases.

Neurological Disorders

Any disorder relating to the brain and how it functions.

Seizure Disorders

Epilepsy

Epilepsy is a disorder of the brain characterized by repeated seizures. People with epilepsy can experience multiple kinds of seizures and can experience symptoms such as confusion, staring spells, stiff muscles, and loss of consciousness.

Cerebrovascular Diseases

Functional Neurological Disorder

Functional Neurological Disorder is essentially a stroke mimic. It can replicate the symptoms of a stroke, such as limb weakness, numbness, and speech disturbance.

Migraines

Lots of people have migraines and I am no exception. Migraines are caused by excessive blood flow to the brain. Migraines affect more than 10% of people worldwide and are 3 times more likely to affect AFAB people than AMAB people.

Psychological Disorders

Any disorders affecting mood, thinking, and behavior. I will not be discussing my mental disorders on the internet. Most people are familiar with what these are and what they look like, so I will instead be providing statistics for each one.

Anxiety Disorders

Generalized Anxiety Disorder (GAD) affects 6.8 million adults. Only 43.2% of those adults are receiving treatment. AFAB are twice as likely to be affected (Anxiety Disorders Association of America).

Panic disorder (PD) affects 6 million adults. AFAB are twice as likely to be affected (Anxiety Disorders Association of America) .

Obsessive-Compulsive Disorder (OCD) affects 2.5 million adults. AFAB are 3x more likely to be affected (Anxiety Disorders Association of America) .

Post-Traumatic Stress Disorder (PTSD) affects 7.7 million adults. AFAB are 5x more likely to be affected (Anxiety Disorders Association of America) .

Depression 

Approximately 280 million people in the world have depression. AFAB are twice as likely to develop depression (World Health Organization). 

Bipolar Disorder

4.4% of US adults experience bipolar disorder in their lives (National Institute of Health).

Personality Disorders

It is estimated that 9% of US adults have at least one personality disorder (American Psychiatric Association).

Eating Disorders (TW)

Eating Disorders affect 9% of the population worldwide (National Association of Anorexia Nervosa and Associated Disorders).

BIPOC are significantly less likely than white people to be asked by a doctor about eating disorder symptoms (National Association of Anorexia Nervosa and Associated Disorders).

Black teenagers are 50% more likely than white teenagers to exhibit bulimic behaviors (National Association of Anorexia Nervosa and Associated Disorders).

Rates of body dissatisfaction were higher among transgender and nonbinary youth (90%) compared to cisgender youth (80%) (National Association of Anorexia Nervosa and Associated Disorders).

[lairn]

Okay, I’m in the gap between school and fieldwork so I’m responsible for my own education for a couple weeks. Things I wanna prioritize:

-read up on spinal cord injuries (precautions and interventions) to reduce my nerves about autonomic dysreflexia

-get a better sense what intramedullary nailing entails since its an expertise of my supervisor

-review precautions and interventions for various ortho ailments

-try out hades

-start a new minecraft world

[als145]

Me and my wife rarely wear hoodies and there's a big reason for that.

Me and my wife are both Quadriplegics. I am a Quadriplegic at the C3 -C4-C5-C8-T1-T10 level and my wife is a Quadriplegic at the C4-C5-C6-T1 Level and we both have issues with temperature regulation and we have trouble sweating or knowing what our chills mean (we get Autonomic dysreflexia causing us to have chills sometimes) so we don't always know when to wear a hoodie or a coat.

Well thankfully we do have some sensation I can feel when it's cold by my face and my top hand and my half thumb, my half hand has been really useful since I don't (physically cannot) wear gloves 🧤 and so when I drive my joystick which involves my hands I can feel the cold breeze on my hand thankfully I can't exactly feel a cold joystick because I don't have sensation in my fingers or the inside of my palm.

My wife, however, has a tad bit more sensation than me. She can feel her top arms and a bit of her front torso. We're talking from the top shoulder to maybe the top of the armpit, so not a lot, but still way more sensation! So she can feel how cold it is way faster than I might be able to but this doesn't mean she or I cannot wear a jacket just because we don't feel it.

We have to take precautions just like everyone else does! So we don't get frostbite or our AD doesn't act up!

Just to end this random rant/post, we wore a hoodie today, which is something we don't often do! But we were fine the whole day except for the time when I left my computer bag at home, oops! (That was this morning)

[cripplecharacters]

im not physically disabled, but i want to write disabled characters in my story i have a character who use wheelchair, and i like to ask should i provide a reason why the character use wheelchair since from what i hear many characters using wheelchair doesnt have their condition specified and often referred as "legs dont work syndrome" so i want to avoid the "legs dont work syndrome" by specifying the character's condition.

Hey,

I think it's always good to establish a character's disability (assuming they're not like a one-off NPC or something). Depending on whether they're the POV character or someone that the MC talks to once in a while or someone in between the two, you will probably want to provide a different amount of detail.

If you have access to the character's thoughts, they might simply think about their disability when they Experience a Symptom or think of something in the past that was related to it, and you can drop the name in there (e.g., “that was right after the doctor diagnosed me with spastic hereditary paraplegia”, or whatever). But if it's some side character, they might just make a single remark about what their exact disability is - maybe they're going through some rough terrain in an all-terrain wheelchair and mention that when they were born with spina bifida in the 60s, they didn't think technology like this would come along. You have a lot of options that don't necessarily have to end up being a detailed explanation of the disability.

What I think is more important, though, is that you know what their disability is and actually understand how it works. Because that's really where the “leg don't work” syndrome comes from - writers who think they know what paraplegia is while never having read a single thing on it. There's magically no pain, no bladder problems, no physical therapy, no spasms, no autonomic dysreflexia, no temperature regulation problems, their Legs Just Don't Work! How convenient.

If you manage to show how their disability affects them and have it make sense for what their disability is, you will avoid the “leg don't work” trope regardless if you name-drop the specifics (though I still think it's good to drop it in-writing). So do your research, establish symptoms, how they deal with them, what aids they use to do that, and make sure it's based on facts rather than what you think is correct - because this thinking is the culprit behind the trope in the first place. You can also take a look at this post.

Hope this helps,

mod Sasza

[the-reality-revolution]

RJ Spina Accessing Super Consciousness

It is always good to speak with RJ and there is nobody like him. In this  interview we focus on his amazing new book Access Super Consciousness  RJ Spina has devoted his adult life to teaching people how to raise  their frequency, improve the quality of their life, heal themselves, and experience the blissful state of truly being free.  

He’d spent the better part of his life exploring profound metaphysical  truths through his own higher consciousness exploration, but it was  waking up from emergency life-saving surgery still permanently paralyzed  from chest-down paralysis that awakened him to the highest truth he’d  ever encountered: he could heal himself and walk again. It was something  that he instantaneously knew. And he knew how he would do it.  

"My body was destroyed, but I was free. It was as if my old operating  system of awareness had been replaced with a greatly enhanced model with  far greater receptivity, bandwidth, and processing ability. I knew  immediately and precisely how I would heal myself. I was in a state of  Grace and cosmic consciousness. I was truly free. " 

Within two months RJ was walking with the help of a physical therapist.  On the one hundredth day after surgery, just as he had originally  predicted on the very first day after emergency life-saving surgery, he  was walking on his own. All the conditions he’d been diagnosed  with—diabetes, pancreatitis,Hashimoto’s disease, hypothyroidism, and a  syndrome called autonomic dysreflexia—had been resolved.   RJ has helped countless people. He has written dozens of articles about  consciousness, the Greater Reality, meditation, the ability to project  one’s consciousness, and the nature of the Self. He teaches meditation, self-realization, self-healing, and how to become a healer to seekers  around the world.