paratyro [all rights reversed]

paratyro ara do mare fee beter lveonger

[all rights reversed]

paratyro discussion group findings

paratyro [all rights reversed]:

paratyro discussion group findings

Project led by:

li'l pharma working group

Zine produced by: cultural resistance Working group

neuroqueer health collectiv

paratyro is a drug that lots of neurodivergent folks (NDS) with sensory sensitivities use to change their co functioning temporarily. For some, it significantly increases tolerance to noise, sound, smell, or touch triggers, lessening discomfort associated with their cognitive environment. Like any drug, there are a lot of different reasons for people to use paratyro and a lot of reasons not to.

Discussions among our membership prompted the NHC to take a closer look at peoples experiences with paratyro. We want to increase our capacity to support our memberS who use/want to use it. With that in mind, we organized group discussions with members that use or have used paratyro to get a better handle on these issues.

We have two main goals when it comes to paratyro:

OProvide accessible and relevant information, support, and resources to create space for people to make their own informed decisions about if, when, and how they use paratyro

OThink creatively about how to expand/supplement existing options to better suit the needs and wants of our members

This zine describes what we found out, what we' re doing, and what we plan to do.

Four most common Concerns:

paratyro has a general effect: it makes you less sensitive to gll sensory stimuli.

Example: You experience all noises as super loud and upsetting maybe you call it hyperacusis-and you Work in a kitchen where theres no such thing as quiet. paratyro can totally help with that, bbuuuttt it'd also affect your sense of smell, So you wouldnt be able to smell something burning.

the biomedical norm is for docttors to prescribe paratyro for "long-term use;" sensitivity to stimuli is reduced all the time, not just when you want/need it to be Example: You' re done work for the day. Before you started taking paratyro, you'd be feeling so much burnout from exposure to noise all day, you' d pretty much pass out the second you got home. Now, you have more energy to devote to your unpaid musician life, buuuuttt you're having trouble tuning instruments, the sound is kind of dull, and you cant quite figure out hoW to get the same nuance and precision your sound sensitivity gave you pre-paratyro.

a pharmacy, so you need a prescription from a doctor

DExample: You' ve heard al1 about paratyro from your friends and you' ve decided it's something you want to try out. You ve had a lot of really shitty experiences with the neuro- and heteronormative biomedical system and avoid doctors at all costs. Now you re forced to choose between getting access to a drug that might be a useful tool for you and potentially opening yourself up to further trauma, OR keeping clear of clinics, but having to sacrifice what could be a really meaningful way of improving your quality of life.

Example: You missed a few days last week because of some epic migraines. Your work doesnt offer any sick pay, so your biweekly paycheck is smaller than usual: $970. You went to the food bank, but a lot of what you ended up with doesn't work with your dietary restrictions. You spend the night planning out a grocery list of the bare necessities to get you through to the next paycheck. It adds up to $432. Your share of the monthly rent is $1300, So you'll need $650 from this check to put toward that. Your paratyro prescription is $246. You decide to go with food and shelter: no paratyro for you.

Knowledge and Share

Skill

And so the problem-solving begins, NHC.

our usual strategy: Start by gathering the knowledge already present in Our community. Then, share it and use it to create and guide future actions and interventions. The knowledge and skills we gathered from our discussions with our membership can be sorted into tWo distinct but interrelated areas of concern:

1) drug regimens; and 2) accesS.

Drug Regimens

A lot of paratyro users have used their drugs in ways that dont conform to the drug regimen (how it's administered, how much is taken, when it is taken) laid out by their prescribing doctor.

The tWO most common differences between peoples drug regimen and how they actually used paratyro were:

Reduced or increasing individual doses

Taking it inconsistently and/or "as needed, " rather than for long-term usage

The tWO main reasons cited for this were:

SThe drug was useful, but some of the effects (both intended and unintended) were negatively affecting their daily lives

They couldn't consistently access the drug for financial reasons or medical trauma

These are the most Users recommended doses told taking smaller than us about: common changes

DThey stopped experiencing side effects

Dwhile they still experienced unwanted effects, they were less severe and didn't impact their. life as much as they did at higher doses

OThey experienced fewer/1ess severe unwanted effects, but it was a trade off: it wasn't as effective at producing the desired effects

The effects were less generalized

The effects were still generalized, but the overall negative impact they had on their life was reduced

These are the most Common changes users taking higher than recommended doses told AState of sensory deprivation that made them feel separate from their environment

some described this as atemporary break from constant discomfort from sensory stimuli

some described this as a reset button," having a longer-term effect that they reported as lasting anywhere from a couple of days to a couple of weeks

The effects made it either impossible or more difficult to perform their paid work the effects helped them perform their unpaid Work

Note: only those who had experimented with doses expressed both higher and lower dos concerns about generalized and/or effects. Those who had only experimented with higher doses only referenced Concerns Constant about needing a prescription and cost. We suspect this has to do with desiring

Access Issues general effects and/or only using the drug

intermittently/as needed)

At the private clinic:

Most of our members do not have private insurance and report paying between $200 and $250/visit

Many of our members (more prevalent with racialized, multiply disabled, and/or houseless members) expressed

feeling fear and distrust of hiomedical institutions because of previous negative experiences

Many of our members who visited private clinics (more prevalent with racialized, multiply disabled, and/or houseless members) reported feeling judged by the attending physician, being subject to invasive questioning not directly relevant to their neurodivergence, and/or having to convince" their doctor to write a prescription (and sometimes not being able to).

All of these issues contributed to people missing, skipping, and or delaying appointments, resulting in intermittent access to paratyro.

At the pharmacy:

BMost of our members do not have private insurance and report paying $400-$425 for one month of thein prescribed drug regimen.

AS a result, some memberS Can only aCcess paratyro sometimes and for others it isn+ an option at all

Problem-solving

The NHC Science Club got together with the 11'1 pharma working group and came up with some health interventions that combined the knowledge of our membership with the Science Club's secondary research and Came up with the following :

Creative Dosage

It's possible to create a personalized, DIY drug regimen (what we affectionately refer s creative dosing). We can't do it for you, but we can offer information and Support systems to help you through the procesS. to as

Reducing dose:

There's a precedent for reducing the amount of a drug dose to alleviate/address unwanted effects, but its definitely not a sure thing.

The knowledge that we gathered from Our members suggests that this does apply to paratyro

In a lot of cases, going on and off drugs involves titration (slowly increasing or decreasing how it acts on a specific body) as a way of preventing unwanted side a dose to see effects. If you get a prescription for paratyro at a regular cliniC, your doctor will almost definitely require this.

SA 10mg dose of paratyro takes about an hour to work. The effects last approximately 10-12 hours. For comparison's sake, SSRIS and many other meds take weeks to build up in your system to the point where you start feeling the effects. Since paratyro's effects are more immediate, this could be an indication that it's well suited to as-needed use.

Our members Who went on and offf paratyro multiple times didnt report noticing more or less unwanted effects +hev could connect to how long they had/hadn't taken the paratyro before and/or after each dose

NHC resources:

check in with the docs and/or counsellors at our free clinic as often as you can. Their knowledge can come in handy.

Join Team paratyro - the NHC-led support group that allows you to connect and share knowledge with other paratyro users. Biweekly meetings are held in-person and online, It's also associated with an online forum you can access any time from any computer (including the free NHC computers).

Medical distrust, trauma, and the NHC Free clinic

The negative experiences our members described in our discussions about paratyro relate to a much larger system of oppression. NDs and other marginalized groups have and continue to face multiple forms of violence at the hands of western biomedicine. It makes sense that a lot of people are reluctant/unwilling to seek help from the biomedical institutions that have done so much harm to them and their communities. One of the main reasons the NHC Free Clinic exists is to provide relevant and respectful services to people who can't access them elsewhere.

Here are some of the ways that we go about doing that:

QAll the staff, volunteers, and docs at our free clinic have made an explicit commitment to providing non tudgmental, relevant, and respectful care

OA11 the staff, volunteers, and docs at our free clinic have gone through training about hetero- and neuronormativity: how to acknowledge it, how to resist it, and how to support others involved in this project. Asubstantial part of this training is adapted to apply specifically to the clinical context. Our clinic has no fees for its services. We also provide free bus tokens and on -site child care to reduce financial barriers.

Everyone wears street clothes-no lak coats in sight. The whole space ie organized so that, wherever you are adaptations can be made to the sensory environment. This includes light dimmers; different seating options: super soft, seam and tag-less robes and bedding; no scented products; charcoal masks and air purifiers to deal with some of the scents we can't get rid of (e.g. antiseptics) ; free ear plugs; noise-reduction headphones you can borrow; stim objects and more. Contact us beforehand and we' 11 let you know what we can currently do, what we could make happen and when, and/or what's not possible.

Cuture project: DIY Labs

the interventions described above mean much when it comes to paying your pharmacy bill, That said, it's our experience that our members and allies have resources that money can't buy. It's all about finding creative ways to make the most of them. The question is, how can we apply that to paratyro: cue epic brainstorm! None of

Our current plan: help assemble groups of people who're interested/able to contribute knowledge, skills, and/or materials to set up and run DIY labs with the assistance of folks from the NHC Science Club. Here's Where you, your cranky neighbour, and your cranky neighbour's unused garage come in.

The li'l pharma working group is looking for the following skills, space, and materials. If you can offer any of the following, get in touch and we111 put you in contact with others who have different/complementary resources and skills, Psst this is a perfect opportunity for some of our able-bodied, neurotypical allies to step up! The following is a list of our current needs. If you can offer anything from the list, contact our DIY Lab Coordinator with details about what you can offer., We'l1 group you with others who have different and complementary capacities. You don't need to, nor do we expect anyone to be able to, do/provide ALL of these things- It's a col-Lab-oration ; )

Aspace that meets all of these requirements:

-Can fit all of the equipment/materials

1isted below + 2-3 people for a minimum of 5 consecutive days/month

- Has windowS or some other form of ventilation

- Has decent lighting (can be supplemented if necessary)

Has a dedicated workspace for a minimum of 2 people (e.g. counter, table)

Space to store materials when not in use (e.g. shelves, bins, milk-crates, etc.)

Has access to electricity and running water

Any of these cognitive and/or physical skills: Read and apply NHC Science Cluh

instructions provided as a 14pt, monospaced, sans-serif font hard copy 0R recorded verbal instructions

Communicate (verbal or non-verbal) with a lab partner (no touch)

Sighted enough to safely operate lab equipment

Enough fine motor control to handle

delicate/smal1 lab equipment like pipettes, test tubes, etc.

Focus on a task for 30 minutes or more

Working memory of 5 days or more

Basic handyperson skills or crafting abilities to help with things like building tabletops, shelves, etc.

Hang out as support/safety buddy

TOols: **no prior lab experiLence necessary, safetytraining will be provided**

Pliers

Glue guns

Bernzomatic micro-torch

Scissors

Tweezers

Test Tube Holders

Hardware:

Homemade alcohol stove or camping lamp

modified as an alcohol burner

Distilling apparatus

Wire Stands

Wire Test Tube Holder

Accurate scales (e.g. -24 food scales)

Materials:

glass jars

glass bottles

metal or plastic tubes (i.e. from pens)

wire hangers

ash trays

aluminum cans

spice vials

plastic containers and organizers

latex, neoprene, or nitrile gloves

boxes (for storing)

knives

razors

sponges

rags or old clothing for cleaning/polishing cloth pins

glass or steel rods

Scrap Wood school supply boxes

clamps

lighters/matches

Super glue

corks

candles

toothbrushes

spray bottles

funnels

coffee filters

plastiC pail for waste liquid soap dispensers

permanent markers

measuring cups

paper towels

- glass medicine droppers

Brasso Metal Polish

goo gone

beakers

flasks

rubber chair tips

test tubes

aquarium tubing or vinyl tubing

red and blue litmus paper

6v. batteries

sand paper

white sticker labels

epoxy putty

Neuroqueer Health Collective (NHC) is the fantasy of angry feminist and aurodivergent academic, Sydney Neuman.

Tablet Tabling: A speculative performance"

hrings NHC into our timeline for an afternOon. It is aa collaboration between Sydney and artist, ally, and all-around dreamboat, Avery Nabata.

The NHC is heavily indebted to:

Nick Walker and Athena Lynn MichaelsDillions concept, "neuroqueer

Health activism from the 1960s

present: notably, Black Panthers

PFMCs, Boston Women's Health

Collective: free clinic movement; Jane

Collective: ACT UP!; Insite; disability justice movementsj neurodiversity movements, and so many