#Movement Disorder

[crippledcryptidd]

Happy Tourette syndrome awareness month

[crippleprophet]

hey, i don't want to put you out or anything, i was just wondering if like off the top of your head if you knew any disability studies articles/books/whatever that center (or even just feature) tic/involuntary movement disorders?

so the answer to this was pretty much no but i spent a bit of time poking around and turned up this 2023 undergraduate honors thesis (link) by a student with tourette’s which seems like a solid starting point for going down the citation rabbit hole!

that piece is “The Embodied Performance of Tics and Tourette Syndrome in the Academic Environment” by Benjamin Allen; i’m only ~1/4th through rn but they argue for a continuum of ticcing + criticize the diagnostic system so i’m comfortable reccing it on that front! the (non-medical) tic-related works cited there are:

Buckser, Andrew. “Before Your Very Eyes: Illness, Agency, and the Management of Tourette Syndrome.” Medical Anthropology Quarterly, vol. 22, no. 2, 2008, pp. 167-192.

Buckser, Andrew. “The Empty Gesture: Tourette Syndrome and the Semantic Dimension of Illness.” Ethnology, vol. 45, no. 4, 2006, pp. 255- 24. https://www.jstor.org/stable/20456601.

Curtis-Wendlandt, Lisa. “Time and the Tic Disorder Triad.” Philosophy, Psychiatry, & Psychology, vol 27, no. 2, 2020, pp. 183-199.

Curtis-Wendlandt, Lisa, and Jack Reynolds. “Why Tourette syndrome research needs philosophical phenomenology.” Phenomenology and the Cognitive Sciences, vol. 20, no. 4, 2021, pp. 573-600.

Miller, James. “The Voice in Tourette Syndrome.” New Literary History, vol. 32 no. 3, 2001, pp. 519-536. Project MUSE, doi:10.1353/nlh.2001.0039.

Trubody, Ben. “Ticced off: An Interpretative Phenomenological Analysis of The Experience of Tourette’s Syndrome.” Journal of the Society for Existential Analysis, vol. 25, no. 2, 2014.

i also searched a handful of disability studies journals for a variety of keywords (movement disorder, tic, tourette’s, involuntary movement, chorea, huntington’s) but didn’t turn up much unfortunately, so all but the first of this next list include someone with tics and/or involuntary movements rather than being about moving involuntarily.

haven’t read these so i can’t speak to the politics / quality (although i’ll make a post if i’m able to read more) but here’s what seemed potentially relevant! also if anything is paywalled please don’t give T&F your money lol, try SciHub or if you can’t find something i can ask around for somebody with institutional access!

Cultural Differences in Reactions to Tics and Tic Severity (2021)

Using virtual reality to implement disability studies’ advocacy principles: uncovering the perspectives of people with disability (2023)

I had every right to be there: discriminatory acts towards young people with disabilities on public transport (2020)

From comedy targets to comedy-makers: disability and comedy in live performance (2015)

From the Case Files: Reconstructing a history of involuntary sterilisation (2010)

i also want to mention “Movements of the Uncontrollable Body Part Two” by Bronwyn Valentine (2019), a creative writing piece about her experiences of embodiment + ableism with spina bifida that i first read pretty soon after it was published & went looking for after developing my movement disorder a year ago because it was so impactful. @fndportal also has some incredibly vital work.

also if you haven’t already read Rosemarie Garland-Thomson’s Staring: Why We Look, it’s not specifically about involuntary movements but definitely a core text for theorizing any visibilized disability.

i hope some of that is helpful!! if anybody checks any of these out i’d love to hear your thoughts/critiques! all the best to you & i hope these offer some resonance with + understanding of your experiences 💓💓

[twisted-rat-king]

Got a head MRI to rule out neurological causes for chronic pain and uncovered a chiari type 1 malformation (cerebellum extends into the spinal canal)

i knew i was neurodivergent but damn

[potsiefaerie]

Hey! If youre omay with it. Could you explain how myoclonus affects you and how you got it diagnosed? Is there anything that can be done to help it?

Oh sure!

So the type I have is probably action myoclonus but the official diagnosis is just "idiopathic myoclonus" aka "I don't fucking know why your body is doing this"

For me it's usually like big jerks in my arms/legs, particularly if my presyncope gets really bad, sort of like a little prequel to convulsive syncope.

I also get it when I'm just really exhausted, I'll try to use a muscle to lift something heavier than my phone and my muscles will just freak out and I sometimes end up dropping or tossing whatever I was trying to pick up.

I got diagnosed by inducing an attack in a neurologist's office - I could feel I was beginning to faint and I held my breath and picked up my full waterbottle I think and BAM, arm flail, nearly fell out of chair, and the doctor went "OH." and said she'd talk to some of her colleagues. She came back and said it was definitely myoclonus (which is what I'd figured from watching videos online), and suggested we try a medication - pregabalin.

It causes drowsiness but I take it at night, and it doesn't seem to exacerbate any of my other conditions or interact poorly with any of my other meds. It makes the attacks less frequent and less severe. It's also sometimes used as a fibromyalgia treatment as well, and it seems to have lowered my chronic pain some too.

[neuroticboyfriend]

girl help my fasciculations have turned into my shoulders rhythmically shaking. what the hell is this called. i know it has a word. is it clonic? i think it's clonic?

[tremor-culture-is]

essential tremor culture is never getting answers from doctors

♡

[missp4st3lmonster]

Using my blog as a platform because I need some help and google is not helping. Additionally I’m in the process of changing doctors since I’m at the age I have to change doctors.

I was diagnosed with Tourettes around 2019 when my parents finally let me see a doctor as they also were convinced it wasn’t normal since I wasn’t growing out of my involuntary behaviors. (Some of which I didn’t even notice until several people told me about them). Long story short with time my premonitory urges I get before a tic have gotten more painful recently and I have no idea what to do about it. Additionally, sometimes the urge lasts longer than usual and I pray I can just get it to leave.

It doesn’t seem normal— is it normal? Can I make it stop?

Any advice is welcomed, I just want it to stop

[lucimahon]

I'm wishing you all the best and a happy Christmas to those who celebrate. I'm going through a stressful time and now suspect I have pneumonia. I'm suffering 5 years and 7 months on since my former doctor caused me to sustain a brain injury and akathisia.

[princeandhisboyfriends]

For those with chronic migraines, have yall ever had twitches with them, like arm twitches? I had one over a day ago and the arm twitch has not gone away and so far the only thing my mind can come up with for why is nerve damage or stroke, despite there being little evidence for it.

I've looked for studies or correlations between migraines and any sort of twitches, but the only medically backed one i was able to find was an eyelid twitch, which makes more sense but isn't the same issue.

Please just let me know if this has happened to you? I need to know if I should drop the extra money on a doctor's visit or not

[crippleprophet]

in need of involuntary movement advice

hi besties, so i have lupus that is currently untreated and have been developing a lot of neurological issues, most likely as a consequence of this. we are suspecting:

1) cerebellar ataxia because i list to the left, i have an intention tremor, my balance has gone to hell standing & walking and is worse with my eyes closed, and i’ve got dysmetria (issues with finger-to-nose test)

2) some sort of movement disorder(s) affecting the basal ganglia. i experience what seems to be dystonia (slow twisting movements & muscles being held still in a certain position), chorea (jerky sudden movements), and ballismus (large flinging movements). the involuntary movements seem to get worse with directed movements, especially fine motor skills (possibly in some sort of relationship with the intention tremor), and strong emotions such as distress or excitement.

these have been getting significantly worse recently, and i’m especially concerned because my involuntary movements have “spread” to involve my legs and throat/tongue. i’m really struggling to find any practical advice & not just bullshit about exercise & taking care of your mental health or how brave caregivers are. my questions are including but not limited to:

if i’m walking while my legs start flinging, what do i do? i’ve started using my upright rollator around the house but i don’t think it could keep me from falling in that scenario

harm reduction in cooking for myself? i already don’t use knives but i’m worried about spilling boiling water or injuring myself with scissors

how to not break dishes. i need to use ceramic & glass because they can more reliably be cleaned for my allergy needs. someone suggested several small tables between the kitchen and couch which i’m going to try but would love any additional ideas as well

eating. i already use adaptive silverware and i think i’m going to invest in some bibs but it’s still so difficult

advice for choking - how to minimize it, what to do during it, etc

do you just take a pillow with you all the time or…? like i start hitting things around me really hard

we’re trying to find a community member who would be willing to drive me to appointments but in the event that i have to take a lyft somewhere, what do i tell the driver in case i start whacking their car?

if i for some reason have to be out alone, advice for not getting murdered by the police and/or forcibly hospitalized?

thank you so much to anyone who has advice, including any resources on where to look up this type of information!! i would really appreciate any reblogs for visibility

[chronically-jinx]

me anytime there isn't a clear path to an exit, so I have to wiggle worm through people while trying not to have a panic attack

extremely fucked up that the only way out is through

[tremor-culture-is]

Et culture is wanting to complain about your hand tremors but feeling like people with "real disabilities" will think you're faking

♡

[chronically-jinx]

this!! for the first 6 months of having my movements and not having any control over them, this was a huge issue.

I couldn't walk for the first 3 months. trying to find a wheelchair or something to help me balance was incredibly difficult, even in some medical settings.

as I started to get better, I was still having big limb movements. some places I just couldn't go because I risked smacking people or products off shelves.

people would stare, some would make comments and gesture at me. that's humiliating, I couldn't control my actions and getting shamed on top of it made me refuse to leave the house unless it was for appointments.

I didn't want to go out, I didn't even want my friends to come over because it was quickly beaten into my skull that I'm not acceptable for the public eye.

My movements are better but any time I leave the house, I end up having big flares because I'm so anxious. Making space for disabled people to just live their lives without having to deal with inaccessible public spaces and people who can't seem to mind their own business is a bare bones necessity

i hope you guys know defending disabled people's right to exist in public also involves defending disabled people's right to exist in public in ways that others might perceive as annoying, unpleasant, uncomfortable, and inconvenient at times. a blatant example is the "slow walker" thing. someone with tourette's syndrome who has issues with verbally ticcing is likely going to have trouble staying quiet in a public space where they're expected to be and doesn't deserve to be met with anger or punishing behavior for it. autistic children (and some adults) getting triggered into meltdowns due to an overstimulating environment. people with hearing problems having their phone on speaker while on a phone call. a wheelchair user taking up part of the road/sidewalk/aisle. people with autism, adhd, hearing problems, or other things that affect volume control having loud conversations. someone audibly talking to themselves, which can be attributed to many things. motor tics. dyskinesia. ataxia. pseudobalbar effect. the list goes on. some of thus may even be potentially triggering for your own issues if you're someone who's also mentally and/or physically disabled, but if you're well aware of how you can't help your response to it, you should be equally aware of how others can't help themselves either. people who aren't able to be disabled quietly and conveniently don't deserve to be punished or met with anger (or turned into a spectacle) for not deciding to shut themselves away.

[fleur-alise]

who tf decided to let my stupid neuromuscular disorder move into my face

[anxiously-avoiding]

I just got an ad for a bra and it’s like “say goodbye to neck and shoulder pain” and I was going to make a joke but actually I wish my neck and shoulder pain could be cured by that bra. Wouldn’t it be amazing to live in a world where a movement disorder could be cured by a bra

[crippleprophet]

guy who starts domming more after developing dystonia like at least i can control someone’s limb movements