Occupational Perspective

Captions cover the spot on the screen you put the information I need

The dialogue is captioned but not the song you have playing that the dialogue is responding to

You only captioned the person on the screen, not the person off screen who is also talking

No captioning of critical sound effects (alarms, bells, dogs barking, etc)

Speakers are not labelled at moments where it is not clear on the screen who is talking.

Captions cover the spot on the screen that you put the information I need!

Other d/Deaf people welcome to add.

[id: lateral trunk support wings on greyed out rigid backrest by permobil. end jd]

^ this thing

how your experience? how helpful? how you like them? complaints? if financial not an issue, is there anything would change to yours / get different model? which model/brand you have, if feel comfortable tell at any specificity (e.g. permobil/comfort company basic wing + swing away hardware)? relevant disability symptoms / reason for need, n whether it help, if comfortable w share?

does it help you stop go too much side to side? can it act as thing lean against? help body from flop over in front?

am specifically looking at permobil for self & get really confuse at functional difference between all basic & premium shapes & hardware options, not able try them on n no ATP help. but experience of any brand greatly help

The seperate ones also give you more options on where to mount them. And you can have them different heights on each side. I find the higher they are on my rib cage the better but other people prefer them lower or even on the hip. If you need a bigger support area the built in ones are less weight. The seperate ones have their own bolts each side so are heavier.

Bitch before enriched flour, neural tube defects like spina bifida were far more common. Even now, spina bifida clinicians and researchers are begging to have salt and maize fortified to reach groups that don’t use as much flour. Before iodized salt, the United States had a fucking GOITER BELT. Eleven years after the introduction of fluoridated water, a city in Michigan found the rate of dental caries among school children dropped a staggering 60%— in an era where tooth decay regularly fucking killed people

I’m literally not even going to start on vaccines, which are among the most successful and robustly studied public health measures in world history

y'all if any of you have issues with heat sores from bed (or just being overheated in general, I'm in chronic pain groups so I like to clearly specify it's helpful for people who are bedbound/have limited or restricted movement, especially due to heat sensitivity in the summer) Aldi's FINALLY HAS THE COOLING PADS AGAIN!!!! they're fantastic for slapping on your mattress, don't leak and don't need to be pre-frozen, and the cooling lasts a good 6-8 hrs and refreshes itself over the next couple of hours. I get 2 or 3 and rotate them through the night/whenever I'm stuck in bed for the day, by the time one states getting hot the other one is ready to go. and since it's meant for dog claws it's not gonna pop on you because you scratched it with a hangnail or whatever. (also you can wipe it with a wet towel to clean it if need-be). they're FIFTEEN USD and they last for several months of daily usage (mine eventually died about a year later, but unfortunately they didn't sell them last year and it was Pure Hell™ 🥲)

But somewhere along the line they just… Disappeared. My mom says they’re not being paid and they’re not in collections. It’s almost as if someone out there did…exactly what Parker did.

the way you frame your conversations is important! People with dementia are often, particularly at the earlier stages, very much aware that their memory is getting worse. This can make them very anxious, which isn't fun for anyone, least of all them. One of the most common things that people say to people with dementia is "do you remember ___?" as a way to try and prompt their memory. This feels helpful, but it's not. Because hey, in all likelihood, that person does not remember ___, and being confronted with this fact is not going to make them feel great. Remember that they literally have a degenerative brain disease; they're not going to suddenly regain their memories because you tested them. Instead, try talking about your own memories. Tell them what you remember. Tell it like a story. If they remember, then they can join in. If not, then hey, it's a nice story.

don't correct them if they say something wrong. Their version of reality is not going to be the same as yours. That's just a given. My grandma is often convinced that she's just on a very long holiday in a nice hotel, and that her dad is waiting outside in the car. I'm not going to tell her "uh, actually, you're in a care home and your dad died 50 years ago," because who's that going to help? Quite literally no-one. It'll just confuse her more, and she's already confused enough. Even if the person is saying something that's making them anxious - a common one is believing that people are stealing from them, or that someone is being unkind to them - then it's easier to try and distract them by trying to talk about something that you know makes them happy, rather than to outright tell them that they're wrong. Being consistently told that they're wrong can make them react defensively; they're not children, and they (usually) know it. It's just easier not to get into a confrontation.

get used to repetition. Don't get frustrated when you have the same conversation 25 times in two minutes. It's going to happen. For them, it's the first time you've had that conversation; they won't understand why you're angry at them for asking a question. It's completely normal to feel frustrated, but the onus is on you not to make it their problem. My grandma's short term memory is, charitably, about 3 seconds long. A conversation with her at this point is like rehearsing for a play; I know her lines, and I know mine. That's just how it is. She gets just as much joy out of telling me that she likes my cardigan for the 86th time as she did the first time she said it. People with dementia are not able to retain the information or the memory of that previous conversation; reminding them that you've already answered their question is just going to confuse and upset them.

don't take things personally. They might say things that are unkind. They might say completely inappropriate things. Again: their brain is deteriorating. It is a medical condition. They're not becoming bad people, or showing their 'true selves' to be evil and rage-fuelled. It's a combination of the fact that they're living in a perpetual state of confusion, which can lead to frustration and anger, and the fact that their ability to process and respond to information is affected by the dementia itself. If they say something cruel to you, you just have to take it on the chin and recognise it as a symptom of a disease that they're not able to control. Step out of the room for a moment if it gets too much. I've been fortunate in that my grandma has never experienced this symptom, but it's very common, and it's no reflection of you, or them.

don't treat them like children. My grandmother is 92 years old and she will look at you like you're the bane of her life if you try and tell her what to do, or use baby talk. Keep your sentences short and clear to avoid confusion, but don't ask them if they need you to clean their wittle fingies.

try and avoid open-ended questions, especially ones that involve memory recall, like "what did you do on the weekend?". My grandma was an absolute queen at making shit up when people asked her that, because she couldn't remember a damn thing, and she never liked to admit that she couldn't remember, because it made her stressed and anxious. "I picked up leaves" was her personal favourite, for some reason. I used to just tell her about my weekend instead, and sometimes she would joyfully tell me (completely falsely) that she also went to the shops, and that was much less stressful for her; she wasn't actively trying to come up with an answer to cover for her own lack of memory, and instead felt like she was part of the conversation on her own, equal terms.

most importantly: don't try and pull them back to reality. The best way I've learnt to communicate with anyone with dementia is to enter theirs instead. Sometimes, this is referred to as 'validation therapy'. It's about acknowledging that the reality of someone with dementia is as real to them as your reality is to you, and you're not going to be able to 'reorient' them to your version of reality, because they don't have the short term memory or ability to retain information that would enable that. Put simply: if my grandma asks when my uncle is going to come home, I gain nothing from (correctly) informing her that he's dead. This just upsets her, because every time she hears it, she's receiving the news of his death for the first time. That sends her into a spiral of grief and anxiety that remains even after the memory of his death has vanished again. Instead, I just tell her that he'll be home after lunch. She nods, accepts it, and we're both happy. My uncle is still dead, but in her world, he's going to come home soon. It's a way of having empathy for the person with dementia, and acknowledging that your reality, or objective 'truth', is not more important than their wellbeing.

The doctor scraped out a bit of earwax to have a better look inside.

I was sent a bill for $200 PER EAR for this 5 second procedure which I did not give permission for them to do.

That was key- they did not ASK me if they could do this "procedure". And, as I OWN a medical practice (it's me. The medical practice is me, sitting in my house on video calls) I knew to call them when this bill came in to be like "You did not obtain informed consent for this procedure, and it was not en emergency procedure. You had full ability to gain my consent and didn't. I'm not paying."

And the massive hospital who owned the bill said "yuh-huh you do have to pay."

And I said "I own a practice. I know these laws. I do not owe you money for this."

And they conducted an "internal review" and SURPRISE! Decided I totally owed them money and they had never done anything wrong ever.

And so I called my state's Attorney General office, and explained the situation because, as I mentioned, I know the law. The AG got in touch within a couple days to say they were taking the case and would send the massive hospital conglomerate a knock it off, guys letter.

Lo and Behold, today I have a letter where said hospital graciously has agreed to forfeit the payment.

"How not to get screwed over by companies" should be part of civics class.

Know your rights and know who to call when they're infringed on. This whole process cost me $0 and honestly less effort than I would have expected.

Civics class wouldn't help most people in this case because the AG will not take on all these cases and most people cannot afford an attorney in this instance or more importantly, the hit to their credit.

Were they going to get into a lawsuit over my $400 bill? No obviously not. But they printed up a letter on fancy letterhead to say to stop and it worked. They followed up with me the next day to be sure, and so ask how much money they had saved me.

They use dinky cases like mine to track habitual misbehavior of large scale companies to build cases they could actually go to court over.

And because people are shocked- I never spoke to the AG of my state directly. He operates mainly by overseeing a whole crew of people. And this is what those people do.

This didn’t happen because I’m special because of my tiny therapy practice.

This happened because this is what the AG office is for.

“The problem is systemic” doesn’t mean “and there’s nothing you can do”.

Then you've been trained well by "The System".

Yes, that System you say can't be fought? Where did you get that idea, huh? Who taught you that "small" acts of illegality don't matter? Who made you think that there's no point in fighting back because it will all come to nothing?

Might it be the same entities that benefit if you believe all that?

Gonna pause and let you ponder.

Never. Ever. EVER.

EVER.

Let companies or corporations or hospitals or organizations or any business big or small get away with screwing you over without a fight. Maybe you personally don't win every fight, but you lose 100% of the time you don't try. You'll win more often than you think you will. I know cuz I've done it.

So have others. Attorneys General offices bring lawsuits against businesses all the time. They do so because citizens contacted them to say "someone is doing a crime" and the crime doers did not stop when told and got into way more trouble than if they'd just stopped. FAFO. The Find Out can't happen if you don't even bother to report the Fucking Around.

On that note, as OP said, please know your rights! And, in a situation where you don't but suspect something is hinky, ask! The people of the internet can help! So can librarians! So can many others. Find out what is and is not okay for them to do. If it's not okay, report them! See something, say something.

Don't let the System win by default.

If you believe The System™️ is only for Them™️ and not you, it will only ever be so.