#ATAXIA
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I genuinely feel so confused and lost with my disability.
I have post treatment lyme disease, I was tested positive for lymes years after gaining treatment. But all of my symptoms are unconventional. They're all things that have been loosely linked to lymes but I don't have the conventional symptoms. I have fatigue but it's not my main overbearing symptom like it is for most people. I never had the bullseye rash and my main problem has always been joint and muscle pain and stiffness. I have tics and recently I've been having a horrible deterioration of fine motor skills. I can walk but I often have to choose between activities. If I am at a full day activity that's not very laborious, I might not be able to participate in my band or theatre. I've always had to choose between school and other things or work and other things.
One day of work for 4 hours leaves me bedridden for a day. I've been unable to draw and put on clasp necklaces or any other fine motor skills. I want a wheelchair to conserve energy and not be hurting all the time but ptlds isn't a "real" disability so I can't get one that best suits my needs covered by insurance and I'm not sure I'm able to get one on my own.
All of this is just, not conventional to ptlds. I feel like there's something else going on but I don't know how to get doctors to test me. I don't know how to keep them from saying no we don't need to test for that. I feel like lyme is not all that this is and I want to be able to have a "real" disability and be seen and accommodated and I just feel so lost and hopeless.
I'm at the best mentally I've been ever, but my physical health is just getting worse and worse with no answers.
I don't know what to do and everything just feels so hopeless.
#disability#chronic pain#chronic illness#physical disability#dynamic disability#chronic lyme#post treatment lyme disease#ptlds#lyme disease#chronic fatigue#ataxia#loss of fine motor skills
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Next of the first years for my paravolley AU is: Tsukishima 🏐🤍
#my art#art#fanart#haikyu#disabled artist#paravolley au#paravolley#sitting volleyball#stroke survivor#tbi#traumatic brain injury#ataxia#yamaguchi tadashi#hq yamaguchi#hq#haikyuu#disability art#illustration
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THEY GROW UP SO FAST!... OR WE JUST KEPT USING THE SAME KITTEN PICTURE BECAUSE WE'RE TOO LAZY, ER, BUSY TO GET A NEW ONE!
This is June. She’s 9 months-old and is sponsored by Leigh Behrens. SNAP Cats rescued June from Sacramento, CA. June is a very sweet kitten, EXTREMELY playful (never stops!), LOVES (human) attention, and is fairly independent, so June could be an only kitty, or she'll fit in nicely with your resident cat(s).
If you’re interested in June please fill out an adoption application at https://www.snapcats.org/category/adoption/catsforadoption/. Thanks.
SNAP Cats uses Smart Cat, all natural cat litter.
#snapcats#specialneedscats#snap_cats#lukiehouse#catswithmobilitychallenges#catswithmobilityissues#ch#catswithch#cerebellarhypoplasia#wobblycats#ataxiccats#catswithataxia#ataxia#ataxiccatsofinstagram#catswithcerebellarhypoplasia#wobblycatsyndrome#wobblycatsofinstagram#chcatsofinstgram#calico#calicocats#calicocatsrock#calicocatsrule#kitten#kittens#cutekitten#cutekittens#kittensofinstagram#cutekittensofinstagram#cat#cats
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NICKNAME[S]: Ataxia (chosen with Guai, meaning 'disorder' and the name of an illness that causes the loss of control of the body. He abandoned his original angelic name once he was banished from Heaven)
DATE OF BIRTH: He is one with the Creator
GENDER | SPECIES: Physically male presenting | (Fallen) Seraphim
PLACE OF BIRTH: The cosmos
CURRENT LIVING CONDITIONS: Pirate ship
SPOKEN LANGUAGES: All that you can conceive
EDUCATION: Only that which destiny allows
DRINK | SMOKE | DRUGS: Anything with your guidance
LIKE[S]: New experiences, learning, becoming steeped in sin, and strawberry-flavoured candy.
DISLIKE[S]: Secrets, being lied to, being ignorant about things.
FEAR[S]: nothing really...
PERSONALITY TRAITS: easily influenced, impulsive, sensitive, impatient.
{ P H Y S I C A L I N F O R M A T I O N }
HAIR COLOR: Red
EYE COLOR: Black scleras with blue irises
HEIGHT: 5ft9
WEIGHT: 140lbs
TATTOOS: Possibly....
MISC: Silver canine
{ R E L A T I O N S H I P I N F O R M A T I O N }
SEXUAL PREFERENCE: Extra dirty, nasty, crazy!! Monster-fucker!!
#i'll just keep him a lil on the side for now like with Jin-su#or maybe i'll remove some other characters and make him a proper one .... IDK YEETTT#ataxia#hc
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was looking up examples of ataxic gaits just out of curiosity because I have an ataxic gait and they're literally all just non-ataxic people imitating us. it all looks like someone mocking me and the way I walk and move. and some of these are clearly being used as resources to teach medical students. medical students are learning about ataxia from imitative mockery of my gait
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Junction Dysfunction
Lafora disease is a fatal neurodegenerative genetic disorder associated with cognitive decline, ataxia and seizures. Using a mouse model mimicking human genetic faults found in Lafora disease this study, instead of focussing on brain aspects covered by other research, finds abnormalities in neuromuscular junctions (the interface via which nerves tell muscles what to do) revealing the importance of the Lafora-implicated gene activity therein
Read the published research article here
Image from work by Monica Shukla, Deepti Chugh and Subramaniam Ganesh
Department of Biological Sciences and Bioengineering, Indian Institute of Technology, Kanpur, India
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in and on the cover of Disease Models & Mechanisms, October 2024
You can also follow BPoD on Instagram, Twitter and Facebook
#science#biomedicine#biology#immunofluorescence#neuroscience#neuromuscular junctions#Lafora disease#ataxia
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Automatic Writing I
That's it that's the post
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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
#chorea#ballismus#dystonia#movement disorder#involuntary movements#chronic illness#neurological disability#ataxia#cerebellar ataxia#lupus#systemic lupus erythematosus#sle#mac.txt#movements of the uncontrollable body
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and in devastating fashion all the doctors who said I should be using a wheelchair were in fact correct and it’s a million times easier than walking i don’t fall anymore i hardly bump into things anymore even going up and down aisles at stores and i have a million times more energy after going out of my house than if i walked.
#it is a different kind of battle accepting a wheelchair when you have a degenerative disease than something that might get better or remit#like i’ve known a long time *someday* i’d be in a wheelchair#but didn’t really accept i’d still be a teenager when that day came#hsp#ataxia#hereditary spastic paraplegia
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Analyzing An Ataxic Dysarthria Patient's Speech with Computer Vision and Audio Processing
Hey everyone, so as you know I have been doing research on patients like myself who have Ataxic Dysarthria and other neurological speech disorders related to diseases and conditions that affect the brain. I was analyzing this file
with a few programs that I have written.
The findings are very informative and I am excited that I am able to explain this to my Tumblr following as I feel it not only promotes awareness but provides an understanding of what we go through with Ataxic Dysarthria.
Analysis of the audio file with an Intonation Visualizer I built
As you can tell this uses a heatmap to visualize loudness and softness of a speaker's voice. I used it to analyze the file and I found some really interesting and telling signs of Ataxic Dysarthria
At 0-1 seconds it is mostly pretty quiet (which is normal because it is harder for patients with AD to start their speaking off. You can notice that around 1-3 seconds it gets louder, and then when she speaks its clearer and louder than the patients voice. However the AD makes the patients speech constantly rise and fall in loudness from around -3 to 0 decibels most of the audio when the patient is speaking. The variation though between 0 and -3 varies quickly though which is a common characteristic in AD
The combination of the constant rising and falling in loudness and intonation as well as problems getting sentences started is one of the things that makes it so hard for people to understand those with Ataxic Dysarthria.
The second method I used is using a line graph (plotted) that gives an example of the rate of speech and elongated syllables of the patient.
As you can see I primarily used the Google Speech Recognition library to transcribe and count the syllables using Pyphen via "hyphenated" (elongated) words in the speech of the patient. This isn't the most effective method but it worked well for this example and here is the results plotted out using Matplotlib:
As you can see when they started talking at first there was a rise from the softer speech, as the voice of the patient got louder, they were speaking faster (common for those with AD / and HD) my hypothesis (and personal experience) is that this is how we try to get our words out where we can be understood by "forcing" out words resulting in a rise and fall of syllables / rate of speech that we see at the first part. The other spikes typically happen when she speaks but there is another spike at the end which you can see as well when the patient tries to force more words out.
This research already indicates a pretty clear pattern what is going on in the patients speech. As they try to force out words, their speech gets faster and thus gets louder as they try to communicate.
I hope this has been informative for those who don't know much about speech pathology or neurological diseases. I know it's already showing a lot of exciting progress and I am continuing to develop scripts to further research on this subject so maybe we can all understand neurological speech disorders better.
As I said, I will be posting my research and findings as I go. Thank you for following me and keeping up with my posts!
#research#medical research#medical technology#speech pathology#speech disorder#neurology#ataxic dysarthria#ataxia#machine learning#artificial intelligence#ai#computer vision#audio processing#audio engineering#data analysis#data analyst#data science#python 3#python programming#python programmer#python code
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Okay it's actually so fun to write Jessica jut stumbling side to side when try to walk of nearly falling while standing still or getting light headed from turning a corner or
#rainy talks#ataxia#is this self projection#yall its been almost 7 years and i still cant walk with my hands in my pockets
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Pepper is 6 months-old and sponsored by Vendetta Yenter. SNAP Cats rescued Pepper from Madera, CA. Pepper is a spicy girl! She has lots of energy and loves to play play play! She also likes to eat eat eat (wet food). Pepper’s ataxia is moderate+, but she gets around just fine. Pepper would benefit from being with another kitten about her age although she does well at entertaining herself to burn-off all of that energy.
If you’re interested in Pepper please fill out an adoption application at https://www.snapcats.org/category/adoption/catsforadoption/. Thanks!
SNAP Cats uses Smart Cat, all natural cat litter.
#snapcats#specialneedscats#snap_cats#lukiehouse#specialneedscatrescue#catswithmobilitychallenges#catswithmobilityissues#catswithch#cerebellarhypoplasia#wobblycats#catswithataxia#ataxia#ataxiccatsofinstagram#catswithcerebellarhypoplasia#wobblycatsyndrome#wobblycatsofinstagram#chcatsofinstgram#tortiecats#tortietude#tortiesrock#tortiecatsrock#tortiecatsrule#tortiecatsofinstagram#kitten#kittens#cutekittens#kittensofinstagram#cutekittensofinstagram#cat#cats
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Headcanon:
Ataxia's eyes:
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dysmetria is horrible because I type like this without autocirrve it's really bad I'm sos ick of jt I cant fucking oress the right keys if I tey ti typ a tmy ordferred speed
corrected text:
dysmetria is horrible because I type like this without autocorrect it's really bad I'm so sick of it I can't fucking press the right keys if I try to type at my preferred speed
like I'n s really fast typer and I want my coordinstion bacj because I'm tired of typing soiely. soemtimes I fuck op a word so badly not even autocorrect cn rigure iut what I'm trying to say
corrected text:
like I'm a really fast typer and I want my coordination back because I'm tired of typing sowly. sometimes I fuck up a word so badly not even autocorrect can figure out what I'm trying to say
ataxia will be the death of me
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Video
youtube
Ataxia- Dust
#youtube#ataxia#dust#automatic writing#john frusciante#joe lally#josh kinghoffer#psychedelic rock#progressive rock#music#music is love#music is life#music is religion#rainingmusic#raining music
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youtube
Ataxia - Hands Automatic Writing II, 2007.
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