Doctorspeak for "go away."
August 10, 2019 9:24 AM Subscribe
That's an interesting system. I feel bad for the author. Before I ever owned a computer I worked for about 3.5 years at a car seat factory. Pretty much permanently screwed my hands. I can manage the RSI, but it never goes away entirely and it's not a question of "if" my hands hurt but "how much." And I write and edit for a living, so... yeah, that's fun. As long as I stick to an ergonomic keyboard, ergonomic mouse and keep to doing a set of exercises to keep my forearm muscles stronger, it's tolerable. Playing video games with controllers or using my phone too much makes things worse.
Some days typing is a real bitch. It's not getting better with age...
Sorry for the author that his experiences with medical professionals has been so bad. At least when I first started having symptoms and went to a doctor they took it seriously and immediately referred me for physical therapy.
Might check out Talon, I'm not sure whether I can adapt to a voice system but it's certainly worth considering.
posted by jzb at 10:08 AM on August 10, 2019
Some days typing is a real bitch. It's not getting better with age...
Sorry for the author that his experiences with medical professionals has been so bad. At least when I first started having symptoms and went to a doctor they took it seriously and immediately referred me for physical therapy.
Might check out Talon, I'm not sure whether I can adapt to a voice system but it's certainly worth considering.
posted by jzb at 10:08 AM on August 10, 2019
Sorry for the author that his experiences with medical professionals has been so bad. At least when I first started having symptoms and went to a doctor they took it seriously and immediately referred me for physical therapy.
The author, Naomi Saphra, is actually a woman. Studies show that there are serious disparities in the way men’s and women’s pain is treated by medical professionals. Unfortunately, women are more likely than men to experience chronic pain conditions, and more likely to have their symptoms dismissed or downplayed. They wait longer for diagnoses and tend not to receive adequate pain relief.
posted by hurdy gurdy girl at 10:38 AM on August 10, 2019 [28 favorites]
The author, Naomi Saphra, is actually a woman. Studies show that there are serious disparities in the way men’s and women’s pain is treated by medical professionals. Unfortunately, women are more likely than men to experience chronic pain conditions, and more likely to have their symptoms dismissed or downplayed. They wait longer for diagnoses and tend not to receive adequate pain relief.
posted by hurdy gurdy girl at 10:38 AM on August 10, 2019 [28 favorites]
That's a pretty amazing solution she's developed.
I figured it was going to be more along the lines of "become a manager very quickly", which is what's happened to a lot of developers I know who developed RSIs. The outcomes from surgery are mediocre at best for a lot of issues, and I know several people who are basically meting out their very limited typing time by managing junior coders. (It takes a lot fewer keystrokes to whiteboard out and then code review an intern or junior associate's code than it does to write it yourself, even though it may not actually be that much more efficient.)
Of course, this doesn't work if you develop a bad RSI when you're in the beginning of your career, only if it happens when you're senior enough to make the leap to a level where you have a team of people cranking out code for you.
At least several of them would rather be heads-down writing code themselves, though.
posted by Kadin2048 at 10:38 AM on August 10, 2019 [4 favorites]
I figured it was going to be more along the lines of "become a manager very quickly", which is what's happened to a lot of developers I know who developed RSIs. The outcomes from surgery are mediocre at best for a lot of issues, and I know several people who are basically meting out their very limited typing time by managing junior coders. (It takes a lot fewer keystrokes to whiteboard out and then code review an intern or junior associate's code than it does to write it yourself, even though it may not actually be that much more efficient.)
Of course, this doesn't work if you develop a bad RSI when you're in the beginning of your career, only if it happens when you're senior enough to make the leap to a level where you have a team of people cranking out code for you.
At least several of them would rather be heads-down writing code themselves, though.
posted by Kadin2048 at 10:38 AM on August 10, 2019 [4 favorites]
Yeah, my mental model of the author immediately shifted from "indeterminate" to "probably female" as soon as she described how the British doctor treated her; not that men are never treated that way, but it's less common. I try to go to my wife's doctor appointments with her when I can because it's clear to both of us that doctors take her pain more seriously if I'm there. It's infuriating but I don't know what else to do.
I do want to say that "idiopathic" isn't really doctor speak for "go away," though I can understand Saphra feeling that way. It's really more "we can tell what you've got but have no idea why you've got it." Which depending on the doctor can lead to "go away," but not all doctors respond that way.
posted by biogeo at 12:31 PM on August 10, 2019 [8 favorites]
I do want to say that "idiopathic" isn't really doctor speak for "go away," though I can understand Saphra feeling that way. It's really more "we can tell what you've got but have no idea why you've got it." Which depending on the doctor can lead to "go away," but not all doctors respond that way.
posted by biogeo at 12:31 PM on August 10, 2019 [8 favorites]
When I saw the FPP I thought "Dictate it to a secretary, like Frederick Delius or James Joyce?" and I suppose the actual answer is close enough.
posted by Grangousier at 12:58 PM on August 10, 2019
posted by Grangousier at 12:58 PM on August 10, 2019
When I worked at a newspaper, one of the copyeditors had a voice controlled input installed because of her RSI. This was over 25 years ago, and the newspaper was using a proprietary system of server and dumb terminals, so the setup was considerably more expensive and elaborate than the software and headset alone. Of course she still had to work in the open editorial area rather than in a private office. She seemed to manage each day despite all that but it clearly wasn't easy.
posted by ardgedee at 1:01 PM on August 10, 2019
posted by ardgedee at 1:01 PM on August 10, 2019
By the way, I don't believe there's a sign that says “We do not tolerate cursing” in any British GP's surgery, although there are many signs all over the place that say something to the effect of "We do not tolerate any form of verbal or physical abuse", which is probably what it said.
posted by Grangousier at 1:02 PM on August 10, 2019 [1 favorite]
posted by Grangousier at 1:02 PM on August 10, 2019 [1 favorite]
Neat system. Wonder if any of my colleagues at the assistive technology nonprofit know about it? Our ED (former Paralympian, Order of Canada, myo tech guru, professor) lives in Dragon Dictate. Another colleague (engineer, ace coder, dedicated gamer) has no hand use and this might be his jam.
Glad to see the author's using a foot switch. I just built a very simple USB HID switch interface (ATMakersOrg/KeySwitch) that can run up to 5 switches from a ~$10 Adafruit Trinket M0. Alternative input methods can really help in pain relief. Plus I'm surprised that the keyboard hacking folks aren't more about foot switches for modifiers
posted by scruss at 2:05 PM on August 10, 2019 [1 favorite]
Glad to see the author's using a foot switch. I just built a very simple USB HID switch interface (ATMakersOrg/KeySwitch) that can run up to 5 switches from a ~$10 Adafruit Trinket M0. Alternative input methods can really help in pain relief. Plus I'm surprised that the keyboard hacking folks aren't more about foot switches for modifiers
posted by scruss at 2:05 PM on August 10, 2019 [1 favorite]
It's really more "we can tell what you've got but have no idea why you've got it."
So my grandad has a weird face-swelling thing that some doctor decided to call "chronic idiopathic urticaria". Except, it's obviously not urticaria. (It's angioedema of some kind.)
posted by hoyland at 2:08 PM on August 10, 2019
So my grandad has a weird face-swelling thing that some doctor decided to call "chronic idiopathic urticaria". Except, it's obviously not urticaria. (It's angioedema of some kind.)
posted by hoyland at 2:08 PM on August 10, 2019
> Plus I'm surprised that the keyboard hacking folks aren't more about foot switches for modifiers
Some are, and do build foot switches. The main obstacles (besides builder interest) seem to be the ergonomics: Designing a single switch effectively is easy, a pair isn't too big a deal, but three or more becomes a challenge: How best to space the switches so that they can be easily hit without enabling mis-clicks, do shoes matter, should chording be an option, and so on. There's one builder who's made a camera control board to operate with his feet so that he can switch cameras and manage video software while livestreaming keyboard builds, so they can get complex.
There's also the problem of finding large key caps that're compatible with Cherry switches. Oversized caps (the size of 2x2 normal keys) are available but hard to come by; custom builders can make them too but that gets expensive.
posted by ardgedee at 2:24 PM on August 10, 2019 [1 favorite]
Some are, and do build foot switches. The main obstacles (besides builder interest) seem to be the ergonomics: Designing a single switch effectively is easy, a pair isn't too big a deal, but three or more becomes a challenge: How best to space the switches so that they can be easily hit without enabling mis-clicks, do shoes matter, should chording be an option, and so on. There's one builder who's made a camera control board to operate with his feet so that he can switch cameras and manage video software while livestreaming keyboard builds, so they can get complex.
There's also the problem of finding large key caps that're compatible with Cherry switches. Oversized caps (the size of 2x2 normal keys) are available but hard to come by; custom builders can make them too but that gets expensive.
posted by ardgedee at 2:24 PM on August 10, 2019 [1 favorite]
Thank you for posting this.
posted by roger ackroyd at 2:58 PM on August 10, 2019
posted by roger ackroyd at 2:58 PM on August 10, 2019
Very awesome. I'm Just Another Perl Hacker but haven't kept up with the conferences for a couple of years so that video reminded me that I should because Perl Hackers are Awesome!
And almost answered a question I have about making non-cloud voice recognition things. Sadly it seems Talon is Mac only and the speech is still better done by Dragon (which is now discontinued on Mac). That's from the video so I'm not sure about the details.
I hope this sort of thing makes it beyond the proprietary and locked into platform bits and becomes as accessible as the accessibility that it can provide. Plus I want to yell magical incantations in a mystical language at my computer and have it do things...
posted by zengargoyle at 3:37 PM on August 10, 2019
And almost answered a question I have about making non-cloud voice recognition things. Sadly it seems Talon is Mac only and the speech is still better done by Dragon (which is now discontinued on Mac). That's from the video so I'm not sure about the details.
I hope this sort of thing makes it beyond the proprietary and locked into platform bits and becomes as accessible as the accessibility that it can provide. Plus I want to yell magical incantations in a mystical language at my computer and have it do things...
posted by zengargoyle at 3:37 PM on August 10, 2019
I was also reprimanded by a doctor in the NHS for swearing! I was begging to have my pain treated with, if not a synthetic opioid (turns out I’m allergic to morphine so they were avoiding everything!), then please at least the codeine every 4 hours as written and not every 8. But seriously, I was in a hospital and could they try something stronger for this pain? The doc asked me why he should do what I wanted and, still in tears, I moaned ‘because this fucking hurts.’
And he chided me, a woman who had been suffering with c diff for 8 or 9 days at that point, for swearing.
I’m so tired of being a woman and so glad the author has found a way to keep doing and enjoying her work.
posted by bilabial at 6:13 PM on August 10, 2019 [11 favorites]
And he chided me, a woman who had been suffering with c diff for 8 or 9 days at that point, for swearing.
I’m so tired of being a woman and so glad the author has found a way to keep doing and enjoying her work.
posted by bilabial at 6:13 PM on August 10, 2019 [11 favorites]
bilabial, please forgive me if this has been double checked already, and don't take this as medical advice without consulting your own doctor, but are you absolutely sure you have a true allergy to morphine?
Unfortunately allergy is one of those terms that has a strict definition, and its misuse can lead to terrible consequences. This is both for those wrongly diagnosed and those correctly diagnosed.
In terms of morphine three distinct things can end up being called an allergy: adverse reactions, pseudo-allergy and true allergy. Only true allergy is actually an allergy, however that's not to say that the others aren't real, just that they require different management.
Pseudo-allergy to morphine is quite interesting - opioids can directly cause allergy like effects with a rash but there's no bronchospasm or anaphylaxis. It's mediated by direct mast cell activation from the drug. Certain opioids are more likely to do this than others and changing opioids stops the problem. It's got a very unfortunate name as the pseudo has a "functional" sounding ring to it - but it's a very definite pharmacophysiological effect - a probably better label for medical records would be mast-cell activation from morphine.
Adverse effects in opioids can be quite severe but here it's a matter of titration and you may never suffer it again. These are the most likely cause for a patient to say they have an allergy but they're the least worrisome from a medical point of view.
Finally true allergy is anaphylaxis and extremely worrying for everyone involved. You almost never get anaphylaxis on your first ever exposure to a drug class - the immune system needs to be primed. There's cross reactivity inside the same drug class though - the same way that a penicillin allergy means you can't have amoxicillin or phenoxymethylpenicillin. Actual cross-reactivity between classes of opioids appears to be extremely rare - unlike beta-lactams where approximately 10% of those with penicillin allergy will be allergic to cephalosporins and likely carbapenems. Allergy is weird though and there's always someone with an unique allergy.
One of the things in your message that makes me suspicious you have a misdiagnosis and don't have a true allergy to morphine is that you said you can tolerate codeine. This is in the same class as morphine - and the body actually metabolises codeine to morphine by CYP2D6. Of course it's possible to have allergies to constituents in drugs - so morphine injections might be bad, but not because it's morphine, and it's possible not to have cross reactivity. (It's also possible to have a true allergy to a different class of opioids - e.g. the fentanyls, but that would make a label of allergy to morphine extremely unhelpful as it makes it more likely that the person will be exposed to those in preference to morphine.)
See here for more discussion at the pharmacy times
In any case, if it's not been properly checked out - it's worth getting it checked out by an allergy specialist. If you're not aware of it pseudo-allergy is extremely easy to misdiagnose as a true allergy.
---
Codeine being a prodrug reliant on CYP2D6 means that people's experience of the pain relief from this drug can be unreliable. CYP2D6 can be induced or repressed by other drugs and people also have different amounts of it around. The genetic variation in CYP2D6 is an example of an inherent bias in medicine towards those of white European background - as it forms a key part of the metabolism of many drugs - yet differing ethnic background have different profiles (although you can't predict from a person's race whether they will be a fast, normal, intermediate or poor metabolizer.)
posted by zeripath at 8:11 PM on August 10, 2019 [6 favorites]
Unfortunately allergy is one of those terms that has a strict definition, and its misuse can lead to terrible consequences. This is both for those wrongly diagnosed and those correctly diagnosed.
In terms of morphine three distinct things can end up being called an allergy: adverse reactions, pseudo-allergy and true allergy. Only true allergy is actually an allergy, however that's not to say that the others aren't real, just that they require different management.
Pseudo-allergy to morphine is quite interesting - opioids can directly cause allergy like effects with a rash but there's no bronchospasm or anaphylaxis. It's mediated by direct mast cell activation from the drug. Certain opioids are more likely to do this than others and changing opioids stops the problem. It's got a very unfortunate name as the pseudo has a "functional" sounding ring to it - but it's a very definite pharmacophysiological effect - a probably better label for medical records would be mast-cell activation from morphine.
Adverse effects in opioids can be quite severe but here it's a matter of titration and you may never suffer it again. These are the most likely cause for a patient to say they have an allergy but they're the least worrisome from a medical point of view.
Finally true allergy is anaphylaxis and extremely worrying for everyone involved. You almost never get anaphylaxis on your first ever exposure to a drug class - the immune system needs to be primed. There's cross reactivity inside the same drug class though - the same way that a penicillin allergy means you can't have amoxicillin or phenoxymethylpenicillin. Actual cross-reactivity between classes of opioids appears to be extremely rare - unlike beta-lactams where approximately 10% of those with penicillin allergy will be allergic to cephalosporins and likely carbapenems. Allergy is weird though and there's always someone with an unique allergy.
One of the things in your message that makes me suspicious you have a misdiagnosis and don't have a true allergy to morphine is that you said you can tolerate codeine. This is in the same class as morphine - and the body actually metabolises codeine to morphine by CYP2D6. Of course it's possible to have allergies to constituents in drugs - so morphine injections might be bad, but not because it's morphine, and it's possible not to have cross reactivity. (It's also possible to have a true allergy to a different class of opioids - e.g. the fentanyls, but that would make a label of allergy to morphine extremely unhelpful as it makes it more likely that the person will be exposed to those in preference to morphine.)
See here for more discussion at the pharmacy times
In any case, if it's not been properly checked out - it's worth getting it checked out by an allergy specialist. If you're not aware of it pseudo-allergy is extremely easy to misdiagnose as a true allergy.
---
Codeine being a prodrug reliant on CYP2D6 means that people's experience of the pain relief from this drug can be unreliable. CYP2D6 can be induced or repressed by other drugs and people also have different amounts of it around. The genetic variation in CYP2D6 is an example of an inherent bias in medicine towards those of white European background - as it forms a key part of the metabolism of many drugs - yet differing ethnic background have different profiles (although you can't predict from a person's race whether they will be a fast, normal, intermediate or poor metabolizer.)
posted by zeripath at 8:11 PM on August 10, 2019 [6 favorites]
makes me suspicious you have a misdiagnosis and don't have a true allergy to morphine is that you said you can tolerate codeine.
Thank you for sharing this. I didn't know about that relationship, and for years I've stayed away from codeine because I cannot tolerate it (no matter how much my dentist insists I should be "fine" taking it, so I simply don't fill the prescriptions he gives and go without), and in the hospital for surgery they gave me morphine and it did not go well for me. Now that I understand this connection, I can speak more specifically to my doctor about the effect on me. Much obliged.
posted by davejay at 10:12 PM on August 10, 2019 [2 favorites]
Thank you for sharing this. I didn't know about that relationship, and for years I've stayed away from codeine because I cannot tolerate it (no matter how much my dentist insists I should be "fine" taking it, so I simply don't fill the prescriptions he gives and go without), and in the hospital for surgery they gave me morphine and it did not go well for me. Now that I understand this connection, I can speak more specifically to my doctor about the effect on me. Much obliged.
posted by davejay at 10:12 PM on August 10, 2019 [2 favorites]
I had a grad school classmate who had been a Big Name Hacker back in the day, and got forced out by hand pain. I believe he couldn't manage much programming with voice recognition, but he could clearly do research in an adjacent field and write papers.
I wish I could say it had made me more careful about ergonomics, or more aware of the fragility of skills and careers. But since I was still in my 20s, my actual literal reaction at the time was "Oh, huh. Thankfully that will never happen to me." I spent the rest of grad school doing most of my work lying down on a sofa, elbows bent at a ridiculous T-rex angle, typing on a tiny laptop keyboard for hours and hours a day, ignoring the pain it was causing which thankfully turned out to be temporary; looking back, I'm astonished I still have full use of my hands and arms.
posted by nebulawindphone at 5:40 AM on August 11, 2019 [2 favorites]
I wish I could say it had made me more careful about ergonomics, or more aware of the fragility of skills and careers. But since I was still in my 20s, my actual literal reaction at the time was "Oh, huh. Thankfully that will never happen to me." I spent the rest of grad school doing most of my work lying down on a sofa, elbows bent at a ridiculous T-rex angle, typing on a tiny laptop keyboard for hours and hours a day, ignoring the pain it was causing which thankfully turned out to be temporary; looking back, I'm astonished I still have full use of my hands and arms.
posted by nebulawindphone at 5:40 AM on August 11, 2019 [2 favorites]
Most providers agree that it is probably not a true allergy in my case, but the expense and hassle of testing it, Meh. I had never had any adverse reaction to pain medication of any kind (opiates included) BUT the rash, swelling, and throat itching (which I could only articulate as “I care again” through the pain) on a dose of only 2mgs in the ambulance on the way to the hospital made all the medical people quite wary. I’m a reluctant taker of opiated because, we’ll, addiction risk, but also because I don’t like how stupid they make me.
I wished I had let them give me the whole 20mg in the ambulance that they wanted to.
posted by bilabial at 9:50 AM on August 11, 2019
I wished I had let them give me the whole 20mg in the ambulance that they wanted to.
posted by bilabial at 9:50 AM on August 11, 2019
I have had a tonsillectomy since and I didn’t even ask the surgeon or the anesthesiologist what they were going to give me. I told them about my experience, the surgeon was great. She was like, you’ll be in a hospital. If anything happens we’ll take care of it.
I do throw up a lot after general anesthesia. So that’s fun. (It’s not fun.)
posted by bilabial at 9:52 AM on August 11, 2019
I do throw up a lot after general anesthesia. So that’s fun. (It’s not fun.)
posted by bilabial at 9:52 AM on August 11, 2019
I've often thought that I would have to stop working if I lose my sight (I also develop software), but losing use of my hands would be problematic as well. Seems like she's developed some good solutions. I did a double take on the idea that you can get RSI in your voice, but of course you can (because things tend to suck that way). Probably good to be aware of that from the outset. All in all, a very interesting read.
I wonder if eye tracking could be a good supplement to the voice system and pedals?
posted by Harald74 at 1:45 PM on August 11, 2019
I wonder if eye tracking could be a good supplement to the voice system and pedals?
posted by Harald74 at 1:45 PM on August 11, 2019
→ the problem of finding large key caps that're compatible with Cherry switches
This may come as a shock to custom keyboard folks, but: Cherry are not the only switches. Microswitches would be far better for feet than flimsy linear-travel switches.
posted by scruss at 6:13 AM on August 13, 2019
This may come as a shock to custom keyboard folks, but: Cherry are not the only switches. Microswitches would be far better for feet than flimsy linear-travel switches.
posted by scruss at 6:13 AM on August 13, 2019
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posted by potrzebie at 9:36 AM on August 10, 2019 [7 favorites]