I’m trying to do what I can to make my life overnight slightly more comfortable so I got myself a metal hands free giraffe bottle for hot drinks and it’s wonderful. I already have the plastic version which I use every day, so I know it works for me, but sadly the plastic bottle doesn’t handle hot drinks.

The metal version is safe for hot drinks and is insulated (although not as much as a proper flask). So if my carer fills it with peppermint tea at 10pm, it’s still nicely warm at 2/3am which is a godsend when I’m having a bad night.

I’m also using it during the day (although maybe 750ml of coffee is slightly excessive) and it’ll be nice in the summer to have cold water that stays cold.

As a heads up while it’s good quality the whole set up here with the clamp mount and long tubing is around £100. If you can position it somewhere where you don’t need so long a straw you can get it for a bit cheaper.

(Also I know I sound like an advert right now, but I promise I’m not being paid. This is just a bit of a game changer for me, and word of mouth is how I find out which disability aids are worth the cost and which aren’t)

My wife’s idea of decompressing after the busy holiday was to rearrange every piece of furniture in our home is this an ADHD thing or just a her thing

I’m not complaining the way she’s done it is much better than it was it’s just like how is this your idea of a relaxing weekend

Listen I don't get to decide when the drunk elf that is my executive actually does the functioning but when he does we have a SMALL WINDOW OF TIME before he finds the schnapps again and we're done

yes this exactly

So to me, there are spoons (general energy cost) and carnival tickets (specific energy cost).

Spoons can be used pretty much anywhere.

Carnival tickets are only good for the carnival, and it’s only in town for a limited amount of time.

So like, if I get “kitchen cleaning” carnival tickets, I can’t use that to clean my bedroom, that’s not where the carnival is.

On the left is one of my first attempts writing with Guided Hands where I was tracing letters on a children’s worksheet. On the right is today’s writing. It’s still messy but so much easier and I’m going so much quicker. It’s definitely beginning to feel more like writing than drawing letters.

This is the Guided Hands device for anyone who has missed my previous posts and was wondering – it’s not a particularly well known device but has been incredible for me. It’s a combination of an implement holder and moving arm rest that helps people with poor hands/ arm function to write, draw, paint and access touch screens and high and/or low tech AAC.

And for the interested, here is a link to a website with them, specifically the two instructables videos about how to use Guided Hands https://www.imaginablesolutions.com/pages/guided-hands

One thing that worries me about the use of AI is whether or not it can worsen people's dementia and alzheimer's in the future. When my grandmother was first diagnosed, we got her math activity books. Now, my grandmother never had a formal education, but we did our best to keep her sharp, get her to do math and writing activity books, sudokus, playing board games that required some level of strategizing with her. Her family is prone to alzheimer's and dementia (both her siblings had it and deteriorated very very very quickly, which yeah, scares the shit out of me being her granddaughter) but she was the one whose mind lasted the longest, she only passed away two years ago, at 88, ten whole years after her initial diagnosis and sure, she had forgotten things, recipes and where she put her glasses and appointments, but she never forgot any of us, ten whole years in, she still remembered us. Now, this may have been luck, but doctors always said the constant mental work + companionship + medicine helped her a lot. So I'm thinking, these people who are now relying on AI for everything, from email-writing to thinking what's for dinner to casual conversations, I've even seen people rely on it to calculate what time they should leave their house if they need to be at a place at a specific time and their commute lasts X number of minutes. As if that's not... the simplest math operation possible? You shouldn't even need a calculator for that!!! Idk I don't know how long it'll take us to see the effects of this + exposure to brain-rotting short form content that is completely meaningless + people addicted to right-wing conspiracy style media. Idk I'm very worried. Please, read, read complicated books! Take up a book on philosophy and try to decipher it and make your own opinions on it, please buy a maths activity book and relearn how to do math, please get a hobby that involves lots of thinking and concentrating. PLEASE!!!

As a neurologist, I’ll give you the pretty name for it: cognitive reserve.

The way I explain it to my patients is that our neurons don’t regenerate. They make connections with each other and that’s it. If you don’t use your brain, they make fewer connections and, if one of them dies, you’re gonna miss it, because that was the only one that knew how to do X. Now, if each one of them has many, many connections, you won’t notice the difference when one of them dies. The others pick up the slack.

As of 2024, 45% of dementia risk factors are modifiable. Relevant to this conversation, 5% for less education and 5% for social isolation.

We absolutely are going to see the reflection of this, but it’s gonna take decades and it’ll be too late. So, for the love of your brain, pretend that it’s a muscle and make it work. People complain about “when am I ever gonna use this maths formula in my life?” You’re not. You’re teaching your brain to think logically. Those sinapses will be there for when you need to figure out your week’s schedule. English classes taught me how to interpret data and how to convey it in this text so it’s clear and you understand what I’m saying, not because I needed to justify why the curtain is blue.

Make your brain know how to do different things. Logic games, puzzles, taking care of a garden even if small, planning a church’s event or birthday, learn a new instrument, learn a few words in another language, look at a calendar every day, do some manual labor if possible. Do not, I repeat, do not let your brain get rid of sinapses by letting AI do everything. Your brain uses 20% of your body’s energy — do you really think it’s going to maintain connexions that aren’t in use?

Most cases of Alzheimer’s are sporadic, meaning no family history. Family history of a first-degree relative with Alzheimer’s starting before they were 80yo increases your risk in 2-3x on average.

TLDR: Yes. From the knowledge we have today, AI will increase the number and severity of dementia cases.

Speaking of Dad: he had another scan last week and the chemo shrank the (inoperable) tumor in his lung again and he now only has identifiable cancer in that one spot of his body. Everywhere else it was found is gone. He starts immunotherapy in two-ish weeks and they’ll see in six months if he needs more chemo to improve the quality of his life.

He still has a terminal diagnosis because of the nature of this type of cancer, but it’s now a coin toss between whether cancer or old age gets him.

Modern chemo is a miracle. I love science.

Question, I know your parents are or at least used to be the bad kind of crunchy, but did he have the Covid vaccine?

I ask because it’s looking like the mRNA Covid vaccine does something to the immune system which massively increases the effectiveness of cancer treatments. The study is on mice but there’s anecdotal evidence that it helps people too.

I’d heard something about mRNA being used to explore the possibility of cancer immunotherapy. (among other things.) its wild what they’re figuring out.

And funnily enough while my parents are/were the bad crunchy types, the one thing they never avoid is vaccines. They’re extremely provaccine and my dad actually just got all of his boosters this week.

My mother’s cousin had polio as a kid and my dad actually ended up in a sanatorium for tuberculosis when he was five or six, so I think that influenced their outlook on that. They had me and my brother vaccinated for everything possible when we were kids

The only thing I wasn't fully vaccinated for was for whooping cough because I had an allergic reaction, and when I got whooping cough at school because of the anti-vax movement that was taking off at the time, my mother was livid.

So they wouldn’t let us take painkillers (unless we had a fever) or a lot of other medicines because of the “side effects” but at least they didn’t fail us there. Small mercies, in the grand scheme of things.

So I have not looked into this at all but the covid vaccine increasing the effectiveness of chemo is wild to me. I'm not sure why that would be. (Not that I'm dismissing the notion out of hand though, the human body is wild).

Yeah, mRNA is looked into for immunotherapy but I have to note that those two things are unlikely to be related in that sense, since mRNA is a huge class of molecules, like protein (one could argue there is greater variety in mRNA than proteins but I don't have the numbers so I'm not going to make any claims on that).

I’m not medically literate enough myself to understand it. (though i think a link was posted in the notes so you may be able to make more sense of it with your background.)

Anecdotally, while quite a few people in the MCAS community attribute the onset of their illness to the mRNA vaccine (and I believe it may have contributed for them. MCAS is a bonkers disease) I was told by my doctors to hold off until they had more data, so I spent a terrifying year unvaccinated for COVID.

Eventually when my doctor deemed it safe enough for me and we took every precaution to avoid idiopathic anaphylaxis, I actually went into partial remission after getting the mRNA vaccine. The chronic hives I’d been covered in for almost five years nonstop vanished. It just stopped.

Something in my immune system went “huh” in response to it and started trying to function again. And I’ve been able to tolerate other non mRNA vaccines again since then, which I couldn’t before. I actually got the whooping cough vaccine on accident while getting a tetanus shot and nothing happened. Everyone was bracing for me to crash and go into shock and I was just... Fine.

And no one can tell me why. They’re just like “well the body is weird, dont look a gift horse in the mouth” lmao

And by contrast, it seems there's maybe a link between mRNA vaccines and a rise in ANA numbers and Lupis being triggered for those already with the potential for it. So now I have to rely on herd immunity according to my rheumetologist which is terrifying. But I might be one of those with a natural immunity to Covid? As does my mother... Who also has Lupis pending... which is... hum.

Anyways! mRNAs are amazing and terrifying and there is some much more we can do with them.

I’m sorry to hear that. If living with MCAS has taught me anything, its that there is no foolproof way to predict how some people’s bodies will react to even the safest of things.

If it's any help, Flo Masks have been literally life saving for me as an immunocompromised person. My doctor ended up buying one after he saw me wearing it and he was impressed by the seal. Doesn’t steam my glasses up either if that’s a concern for anyone who struggles with that.

Sorry for the lack of alt ID folks, I’m having a bad brain day, but hey, @stringsofglass, I dont know where you are in the world, but strapless adhesive N95 masks are a thing and not many people know about them.

This is one example a friend of mine uses because she also can’t wear regular masks without it causing conflicting issues with her nerve pain:

I’ve only ever seen them available to buy in bulk and of course there is always the possibility of a skin reaction to the adhesive. But I wanted to put it out there as an option for anyone who didn't know adhesive masks are available.

the persecution of lefthandedness is insane to think about because it was so intense for so long, in some places still is, without any clear profit motivation. sheer love of the game. as late as the 70s at least they were smacking my stepdad's hands for it with a wooden ruler at school, to this day he's in weird ambidexterity situation where he's not great with either side and notably clumsy due to poor hand-eye coordination. just wtf

It is fascinating to me that people also think of handedness as an example of bigotry that just...went away. As you note, it...hasn't in some places. I know people who grew up in the mid-late 90s who still had this problem.

But also, and this is really important to keep in mind regarding bigotry that still causes in many ways larger problems, that the structural problems are not actually fixed.

If you go to any computer lab or public library, the mice will be on the right side of the computer. Sometimes they can be moved. Sometimes they can't. Many computer mice are curved to only fit in right hands.

It is impossible to find lefthanded scissors without going to a specialty store, because most scissor makers don't even make them. And it's not just a matter of grip; the slicing side of the blades is obscured if you use righty scissors in your left hand, so your cut is off.

All those signing pads with the little chained styluses? Almost always on the right side, often not even long enough to stretch to the left. Makes signing for lefties extremely difficult.

I caused actual muscular problems in college having to twist around in order to write at right-handed desks in college when there weren't enough lefty desks--and there never were. Some classrooms didn't even have a single one.

I could go on.

But the point is, bigotry isn't just a mindset shift. People can't just decide they're not bothered by that particular difference anymore and everything's fine, because society is still structured and designed to cause problems for marginalized people. And they're never even going to notice all the little ways their life is bent to convenience them that inconveniences others.

When kiddo was learning to write, their teacher—who was a beautifully kind, caring, compassionate person who even thanked me for making them aware of certain kinds of left/handed supplies, because their new toddler was a lefty and they’d never even thought about it—was teaching the kids a method for word spacing that involved placing their free index finger down at the end of each word and then writing the next one.

Pause for a moment, especially if you’re right-handed—and I’m being serious here, physically do this if you have two functioning arms and hands—and grab a writing tool in your left hand. Now place your right index finger down and try to start writing a word next to it.

Yeah. Great technique, huh? Really convenient and comfortable and easy. 🙃

I sent in a small baggie of small popsicle sticks I’d custom painted for them and labeled with their name for kiddo to use instead, but ultimately they stopped because it wasn’t as convenient when nobody else had to get something out.

Writing in English is difficult enough when you’re left-handed (most of our letters are designed with pull motions, but lefties must push), but even other foundational basics are made more difficult than they have to be, because their needs aren’t considered, even in situations where overt hostility isn’t intended.

Even now, in an older grade, they’re now all sharing a lot of the supplies, but my kiddo has their own pair of labeled lefty scissors they keep in their personal cubby. Teacher was 100% chill with me sending them in, but didn’t even consider to take the step further when I’d asked about whether or not they had them to just… get some for all the lefties. I know there are other kids, know some of them personally. (I made a set of writing spacing sticks for the single one that I knew of back in 1st grade.)

Regarding computer mice? Kiddo had standardized testing last year. They do it on chromebooks now at their school. They did their entire first day with the track pad instead of the mouse, because none of the teachers proctoring or assisting even knew you COULD switch the sides/toggle a setting to switch which button was the dominant select. We happened to have one at home thanks to remote learning during Covid’s early days, so that night we sat down together and found the setting ourselves so they could fix it the following day. But on a student account at school, they couldn’t change that setting. And? None of those teachers knew enough about technology to be able to override it. So even when I went above and beyond and personally sought out the skills and tools to help my child level the playing field on their own, the teaching staff was so unaccustomed to even considering this as a need or problem, that they weren’t able to remove the incredibly basic barriers to a fair schooling experience.

And this is honestly a good school, with staff that care and work hard and take 99% of bigotry concepts very seriously, teach about truth and compassion and how to recognize at this kid level a lot of the basic seeds that can grow into hate and hurt and also healing and helping. But the fact that left-handed needs are different? It is so ingrained to default to right-handed layouts that even left-handed staff don’t conceptualize these problems, because they were taught the exact same way.

What antipsychiatrists believe:*

another introductory post to some basic antipsychiatry beliefs in a condensed bullet list for your convenience

overall one of the primary components of antipsychiatry is and always will be autonomy. if you want to exist within the psychiatric system you have that right.

liking your therapy/psychiatrist/medications/recovery goals/diagnosis/experiences in a psych ward does not mean that you can't be antipsychiatry. you don't have to erase your positive experiences to acknowledge that the system is inherently abusive and must go to be replaced with something better. (I always try to emphasize that the plan in antipsychiatry is not "leave everyone stranded")

autonomy 5ever ✊

the fact most people don’t realize cochlear implants have to be surgically implanted by removing part of your bone and putting it back and they are genuinely convinced it’s just a device you put in your ear is. baffling. alarming. kind of horrifying. I wish more people took pride in being educated about particularly risky things before thoughtlessly suggesting them to others

On her 18th birthday my sign tutor threw her cochlear implant (the outside bit obviously) into the bin because she always hated it and hated wearing it. She can't do that with the actual implant though, which has caused her a lot of nasty headaches over her life.

Also if this helps, I’m an in-home caregiver (as well as being disabled lol) and it doesn’t bother me at all when people don’t talk to me and just talk to my client. I’m just there working my job while my client goes about their life- you can talk to me if you really want but honestly it’s nice to just go about my work in the background

I was a support worker for a bit for people with purely physical disabilities and yeah, seconding that. I'm working. I'm here to support the person i'm working for, and in my particular role, my job to be a pair of hands for them. You wouldn't talk to someones hands seperately from them, so you don`t need to talk to me.

disorders of and relating to the autonomic nervous system are some of the most common medical conditions in the world and yet the current overall state of medical care regarding dysautonomia around the world is inadequate, pathetic, and frankly embarrassing. these conditions are fucking everywhere now because covid-19 damages the autonomic nervous system, and most doctors barely know the first thing about identifying or treating them. people can be born with dysautonomia or develop it at any age, at any level of health or fitness, and it often pops up within weeks of some kind of illness, infection, injury, and/or surgery. not just from covid-19!

there is no complete list of what can cause or trigger dysautonomia because the autonomic nervous system is made of fucking twigs! and it affects every part of the body! the autonomic nervous system is supposed to control everything the body does automatically, and it turns out we as humans have a lot of bodily functions that are supposed to just work™!

despite being everywhere, these conditions have barely been taught in medical schools until recently, it is largely up to doctors to learn more on their own, and it is a HUGE problem!

autonomic conditions often only show up on specialized autonomic testing! which can involve really specific equipment like tables that tilt, fancy saunas to test sweat, or swallowing a pill to see how it moves through the digestive tract! a ton of people with seriously disabling cases of dysautonomia test negative on common blood tests and scans and then get told they must be perfectly healthy! even if those tests cannot possibly evaluate for dysautonomia! even if those cases of dysautonomia are extremely treatable, if only the patient could get tested and treated by a doctor who actually fucking knows about dysautonomia!

according to the big POTS survey from vanderbilt, the majority of patients with postural orthostatic tachycardia syndrome got told by at least one doctor that their autonomic nervous system dysfunction was exclusively some kind of mental illness or otherwise 'all in their head'! and POTS affects millions of people in the US alone!

SHIT IS BAD OUT THERE! a ton of people who have mystery medical issues, including medical issues that prevent someone from working or going to school, including medical issues that can make someone barely able to get out of bed, including medical issues that can make it hard to think or remember, including medical issues that make it hard to sleep right, including medical issues involving mysterious pain or numbness or tingling or burning or itching, including medical issues involving chronic nausea or vomiting, including medical conditions that can make someone regularly faint or near-faint, including medical issues that have completely fucking derailed someone life, HAVE EXTREMELY TREATABLE DYSAUTONOMIA!

but they need to see a doctor that actually knows about dysautonomia first! yes I am heated about this! patients often spend years suffering needlessly, a ton of patients become unable to work, and some patients even die just because they never saw a knowledgeable doctor! not everyone can afford to go to the dozens of doctors it sometimes takes to find one who knows anything about dysautonomia or is willing to learn anything about dysautonomia and IT FUCKING SUCKS!

learn more from dysautonomia international! they also have resources for medical professionals because they run medical conferences about all this stuff.

one of the easiest ways to find a good dysautonomia doctor is to ask patients near you who have been diagnosed and are getting treated! (please do not mention me on any support group, thank you! I am just a patient spreading the word.) but note the dysautonomia international maps and lists of doctors are very outdated. and there is no complete list everywhere of every doctor that is knowledgeable about dysautonomia or is at least willing to learn. most of the time, a doctor who is willing to learn more is better than a doctor who heard of POTS once 15 years ago and insists the only treatments are exercise, salt, and/or propranolol.

way more treatments than just that, propranolol is now considered to be one of the less effective treatments, and new treatment options being found all the time!

the amount you have suffered in your life does not automatically correlate with whether or not your conditions are treatable! people with life-threatening forms of dysautonomia can still experience major improvements in comfort, quality of life, and even expected lifespan with treatment! but that treatment needs to actually fucking happen first!!!

"I think autistic children are often intuitively making decisions about worthwhile use of their energy or bandwidth in ways they could never logically explain, either because they lack the words or because the act of explanation itself would require a level of verbal bandwidth they may not have."

Very good article, and i have a partial disagreement - i think what's happening is there are probably three underlying things happening that all look roughly the same from the outside, and are being given the same name.

It will never cease to irk me when people look at devices and tools made for disability and call it a "scam" just because it doesn't work for them.

Of course, kinesiology tape doesn't work on you if you don't have connective tissue or soft tissue damage. Your body doesn't need help holding itself together. Mines does.

"Posture braces are a scam, you should just exercise more." Okay, what if you can't? What if no matter how much you exercise, your body will always need extra support.

"Foam rollers don't actually do anything, just do exercise." Again, see the above.

"Neck traction devices? Pft, stop being lazy and exercise." Again. See. The. Above. Also, speaking as someone with a severe neck injury, sometimes you need those devices to exercise. And yes, sometimes moving half an inch is considered exercise depending on the nature of your injury and limitations. My current goal in physical therapy is to hold my neck up on my own for longer than ten seconds while lying on my back. It's taken me a year of intensive work to manage it. The traction devices have been a part of this, as recommended by my physical therapist.

"Balance boards, omg what are you, a baby who can't walk?" IN SOME CASES, FUCKING YES.

Like I get it, I get it. You've seen the infomercials and they look goofy, or you just plain cannot think of a situation where you personally might ever need some sort of assistance with your body. But good news! Disability is the only minority group you can become a part of at any moment through sheer bad luck, age, illness or a genetic ticking time bomb hiding in your DNA. May the odds be ever in your favor, and if not, may you encounter kinder people than yourself.

Something that can be done to help autistic people: if we're ever rude, or are too blunt about something, misread a social cue, or hurt your feelings, give us the benefit of the doubt. Odds are we're probably not even aware of what we did and had no intention of upsetting you. It can be very easy for us to make social blunders without realizing it. Just explain what we did and how it hurt you, so we can make an effort to do better in the future

I think it might be helpful to add some examples of how this might look in an actual conversation.

Let's say I, an autistic person, say statement X. You think it comes across as rude or oblivious or something else. You could respond:

'Hey, I'm not sure what you meant by X, can you clarify/explain/rephrase?'

Or

'Just to clarify, when you said X, did you mean Y or Z?

These both give me, the autistic person, the information that what I said wasn't clear (or came off the wrong way) and gives me a chance to restate what I was trying to say without putting any blame on anyone. (This also works well when trying to communicate with basically anyone at any time tbh.)

If you know me well enough, you might also add something like, 'oh, I understand now, at first I thought you meant W' which could give me some useful feedback for the future on how what I say comes off to others, but this isn't always necessary.

Basically 'giving the benefit of the doubt' doesn't mean 'let things slide,' which is an interpretation I often see. It might turn out that what I'm trying to say is actually rude and I'm trying to be rude, in which case, you would be justified in reacting to that rudeness. But more often than not, there's just a simple misunderstanding that can be cleared up with a couple extra sentences.

You know how it went around tumblr that if your periods are heavy and painful, you should go to the doctor in case you have like, polycistic ovarian syndrome

But I went to the gynecologist, had internal and external ultrasound done, then a followup ultrasound every year, and nothing looks even remotely wrong.

I had heavy cramps, until the pain radiated from knees to mid chest, I bled for up to 7 days until I was anemic, I fainted when I stood up and my pressure dropped. I spent 1/4 of my life miserable.

But there was nothing wrong with my reproductive organs.

Then I came across this:

Haemophilia in women

Guess who has a referral for Haemo clinic 😎