#ATAXIA

[skys-archive]

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.

[gayaest]

Next of the first years for my paravolley AU is: Tsukishima 🏐🤍

[lovesnapcats]

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.

[wheelie-sick]

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

[sillylandmagic]

Any other autistics have cerebral palsy? I feel like people don’t talk about the added struggles it adds in terms of doing basic daily things, and how others see you cause of it.

I can’t bring a spoon to my mouth without the food falling off because of dexterity issues with both autism and cerebral palsy. So I have to stick my head down with my hair getting in it to be able to open my mouth and just eat the food off the spoon, and even that’s hard because of chewing and swallowing difficulties associated with cerebral palsy. This is especially difficult when eating in public as this seen as gross.

I cannot use my fingers to scrub my hair in shower, because of this, I have to use my palms and move the soap around. My hair doesn’t get fully clean. I’ve regressed in the ability to wash my body, so I can’t wash it. It goes dirty. I can very thankfully wash my parts, but it’s still very difficult to the point of it being painful.

I can’t shave or trim and body hair because I can’t coordinate the movements. I can’t do any self care other than some difficulty with brushing my hair.

According to my IEP papers, I have mild cerebral palsy with deficits in balance, coordination, and motor skills. It doesn’t specifically say ataxic cerebral palsy, but that’s what my physical therapist is trying to say on the paper. My ataxia causes very bad leg pain that I’ve had since a baby because of my ankle pronation(basically where your ankles roll inwards). Causing valgus which hurts my knees. It’s very likely that I have some form of leg length discrepancy, which is where your pelvis tilts, making one leg longer.

I have episodes where all my joints cramp up, causing lots of pain; because of my posture which is because of my ataxia. Along with the physical pain there’s mental pain, I have other brain damage that causes severe processing issues, and cognitive impairments. I’m not in speech therapy any more, but my speech is still impacted. This ties in with having autism too so it makes me slur my words, which is why I can only speak in short sentences. Growing up when I tried to talk more, it was not understandable and very stuttered.

Kids would laugh at me for the way I walked, and called me retarted. Yell at me to go faster, and were and are just assholes. My eyesight is affected, I have retinopathy of prematurity, it corrected itself. But my vision is still impacted, I need 7.50 prescription and have impaired depth perception. Causing difficulty for all BADLS.

That being said, having both higher needs autism and having cerebral palsy makes it significantly harder to live really. I went through 5 years of occupational therapy, 8 years of speech therapy, and am still doing physical therapy. It has improved my independence, but it’s still affected.

I hope this shows you others with cerebral palsy and autism, that you aren’t alone. I’m proud of you folks no matter what. You matter.

[weirdstrangeandawful]

Anyone who has lost the ability to work as a result of disability... any advice? I think I need to start preparing for this very near eventuality.

I can't get on disability assistance here because I am only allowed to have CA$5000 in savings and I currently have more than that because a) I'm trying to finish my undergrad and get a PhD, b) I technically have other money I can't access because of financial abuse and c) I need to save CA$8000 (at least) to $11 000 (realistic) for a wheelchair that I desperately desperately need. Not to mention a $30 000 service dog which I also desperately need plus my CA$8000 hearing aids which are only meant to last 4 years and are currently pushing 5.

I don't have a partner. All my close friends are also disabled or don't have money to spare or both. My parents are the financial (and other) abusers. The only family I feel safe with are academics and have a child so money is very tight. I'm gonna be on my own if I can't continue working and I won't be able to keep my place to live since my tuition is over $5000 which is the max I could have on disability assistance and my housing is dependent on my studying.

Advice desperately needed and welcome. Even if you're from a different country (I do a lot of disability advocacy work so I am pretty good at parsing out what's useful from US-centric advice)

[chickpea-corea]

Automatic Writing I

That's it that's the post

[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

[justdrowning]

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.

[d0nutzgg]

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!

[stripeixii]

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

[rainingmusic]

Ataxia- Dust

[lovesnapcats]

This is June. She’s 5 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 will need to have a kitten about her age in her new home to play with and learn social skills with. Hmmm… I believe we just might have a few kittens her age here!

If you’re interested in June (and maybe another kitten her age) please fill out an adoption application at https://www.snapcats.org/category/adoption/catsforadoption/. Thanks.

SNAP Cats uses Smart Cat, all natural cat litter.

[wheelie-sick]

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

[sillylandmagic]

Poem and drawing I made about having ataxic cerebral palsy.

[animerunner]

Not me just figuring out that my flares can get triggered by rowing machine. It just feels different then when normal walking triggers it