I’ve been living with foot drop for 17 years caused by a brain tumour and whilst I’m doing daily exercises to help maintain strength and stability I just want to walk ‘normally’ and be able to run without feeling like I’m going to either fall over or twist something.

I’ve got a brace of sorts which does help a lot, I also use K tape which also helps and I’m looking into FES. I can walk without any aides just it ain’t much fun, especially now I know what it’s like with a brace.

Few questions;

• does anyone have recommendations for something like an afo that they have found helps? Come the summer I don’t really want to wear anything too obvious.
• getting older worries me, as in losing balance etc. does anyone have any experience with this?
• quite specific, has anyone used functional electrical stimulation with foot drop? Did you find muscle strength improved?

Rather long post but appreciate any advice

In the process of gaining disability

New to this applying for disability in NYS. Apparently they auto reject u for SSI if ur anywhere close to 2k dollars. Do they check monthly if ur near the 2k or annually or what’s the deal. Also curious what the approximate monthly stipend is for food or necessities, just ballpark me have no idea. How bad is it living off disability- is it really hard to have enough money for food? Ru eating purely frozen pizzas or something. Does this also mean I should just give up on trying to scratch any money together cuz I could get kicked off of it. Ru guys forced to live in huts (not actual huts) or with other randos? Pls lmk guys

I have a student with congenital coloboma and sensory nystagmous - words that don't mean much to me but it might help people here answer my questions. The doctor's note says to "let her sit near the board" and "write in big letters", end of useless advice.

The context : This is a private school in Bahrain. She does not have a learning assistant nor is she entitled to one. She does not read braille. There's no NGO that can help with that. She's in year 6 but testing 5 years behind. Her vision issues have really compounded into academic lateness. Please do not advise to use braille (I don't read it, she does not read it, we have no one on staff to teach it), contact admin (done, they gave me an 1-hour online webinar) or request additional resources like an LEA (parents cannot afford it which means she cannot have one). The only resource that I have successfully begged for is a pen reader. It has been ordered but is not here yet.

The issue: I have been (unsuccessfully) trying to get her to use her tablet more since she cannot see the board no matter how close her desk is. I'm sure the degree of the above conditions vary; in her case she basically needs to stick her nose to the board/paper/tablet in order to see it.

We are really struggling with maths. I don't think I can teach her maths by just having her hear a bunch of numbers. I need her to be able to see examples and refer to them, look at shapes, etc. However she always sets her tablet to the lowest brightness as she feels pain when the brightness is higher. It makes things really hard for her to see.

So she cant see from a reasonable distance and feels pain up close.

I was wondering if an 'e-ink' tablet would fix this issue? There are apparently cheap-ish android versions of kindles which would allow me to upload some pdfs with images, diagrams and examples but look more like 'regular' paper.

Can anyone here with experience/knowledge of the above conditions tell me if this is a viable solution? As well as other potential solutions for learning mathematics with serious visual disabilities.

Thanks in advance

tl;dr I don't know if I'll end up fired, quitting, part-time, or just continuing to miss a bunch of work and pay in the next few months, and so I have no idea what to put for the question on the disability application asking for your 2025 income

I've been diagnosed with a variety of mental illnesses with the main one being bipolar disorder in 2017, and most recently I started having electrographic seizures in late 2022 and got diagnosed with them officially in May 2024. After a stressful life changing event last September, my symptoms of all of them are getting worse. I often wake up with short full body convulsions that I'm still unsure are related to the epilepsy or if it's a subconscious anxiety thing, and between that and the intense depression caused from being bipolar, I've been missing more and more work. I also can't drive myself until April at the earliest due to a breakthrough seizure in October (my spouse has been driving me to work when he can, but I'm unsure how much longer he'll be able to).

Because of all of this I've been missing a ton of work, and I wouldn't be surprised if I get fired for it, but if I don't I at least want to discuss with them about switching to part time, but who knows how that will go. So I've decided to apply for disability just in case I keep gradually getting worse and I'm just unable to work anymore, because that's the direction things are going in.

Unfortunately though I just don't know what will end up happening in the next few months, and so the question about "What will your salary be in 2025?" just isn't something I can accurately answer right now. I can at the very least say with 90% confidence that it will be lower than mine is now (and currently I only make ~23k a year), but I don't think I could give a number because I don't know if I'll be let go, have to quit, reduced to part time, or go back to missing work nonstop (and not being paid for it) while technically being "full time" on paper. I don't want to wait too long to submit it considering how long the wait often is (and who knows what will happen with the shifting American administration), but I don't know when I'll have an answer.

Have any of you also struggled with answering this question on the application? What would the best way of going about it be?

I've recently become what I've considered disabled (I mean how do I know? But I've been unable to do most things I used to)

But Thanksgiving is coming up and normally I go to my inlaws house but it's a 3-4 hour train ride and then 2.5 days staying with them, we've done this for years. And I just don't think I could do it, even my partner was thinking I couldn't but she's sweet she didn't even mention it until I did.

I can still have some celebrating at home with my family but still won't be able to eat the food (its gi related illness) and just overall I feel like I'm missing out on the holiday. How do I cope with feeling like I'm missing out on the holidays?

Some of you on here called me privileged on a post that was removed because I said I don't like money. What I meant is Money does not fill the hole left in my heart. No use explaining with words gets me nowhere. I hope you all like coal for Christmas though.

In full transparency - I'm not as involved in politics as I should be, but as someone with multiple disabilities I am terrified for the future of the ACA. Someone sent me the FPL to qualify for Medicaid, and informed me that if you weren't 100% below (in the first column) your Medicaid was at risk of being stripped. And of course, I am in the 120% category (or the second column). I live in NY, I'm on SSDI, have no other income, I'm on Medicaid - soon to also be on Medicare and I am severely disabled - my illnesses will result in my death. How can it be that I make 'too much' meanwhile the government is the one paying me? Is that true? Or is this person just paranoid? I will never understand how that can be a thing. I can't even fathom losing Medicaid/insurance coverage - I would seriously (physically) die. I would starve to death. I'm fully reliant on pain management for procedures (not for medications). I take A LOT of medications - one of which is chemotherapy. Listen - my life ish hard..every day is painful, but I didn't want to die yet. I'm 31. I'm really that disposable to this world? I obtained my insurance through the marketplace. However, like I said, I will soon be transitioning to Medicare (as I've been on SSDI/Medicaid for 2 years come March). My SSDI medical check-up renews come January. I am absolutely sick over this. I am hoping someone with more of a political brain can help me/contribute/provide some hope here (if there is any) because this is scary.

Please be kind. (Can't believe I have to say that.)

EDIT: I have a mental health disability. It is primarily due to lethal (to me only) Bipolar; my Depression is dangerous. I also have a TBI, ADHD, PTSD and a few other fun spices. I was a Union Scenic Artist and am a certified dog trainer. I worked a bit as well, even when I went on SSDI, until about six years ago. I have some physical issues that have to be taken care of, such as a hip replacement, so that I will be mobile again. I am a fine artist. I will get operated on here, and had hoped to be physically able to return to some sort of work, but I'm 58 and female. Selling my art and some sort of basic job is the way I imagine I will have to support myself.

I thought I'd made my mind up, but now people are making me doubt myself. So, I thought I'd come to the page where people in my situation can offer their thoughts.

So, I'm a British citizen. I've been here for decades, but never became an American. I paid taxes, and as I can't vote, I volunteered for elections. The fact that Trump was even in the running for President made me decide I should move back to the UK, and his winning cemented that. Here is the issue:

Currently, I use all of my SSDI to pay rent and bills, as there is no available Disabled/Affordable Housing near me. The waitlist is about 14 years long, and has been closed for as many, with a once a year lottery for a lucky few having started last January. I live way below the poverty line, and rely on Medicare for lifesaving meds, and SNAP for food.

If I stay here, from what I can tell, the future looks bleak, just from the cost of medication alone. Obviously SNAP is highly unlikely to increase when the tariffs increase 75% of what we eat. I'm a vegetarian, and practically vegan at this point. As I eat beans, rice, and fresh produce now, and have to limit the choices I make already, I cannot fathom how this will work out in the coming years. And if my rent increases again, I'll be on the street.

So, I could just move back to the UK. I would lose my SSDI, need to find a place and some way to make money, but after three months, I'd be able to use the Universal Healthcare. It will take two to three years to re-establish residency, but then I could apply for benefits.

I have a very small Trust that will allow me to live there for a year or possibly two, before it runs out. If I stay here, it will not be available in a couple of years. Thoughts?

I am only 30 years old. I had a ruptured hemorrhagic stroke and it was really severe and I'm still feeling pain on the right side. No sensation. Cannot use right hand leg fully. Not able to work at all. I also have two little daughters what else I can be eligible. thankful to God To be alive 🙏🙏🙏🙏. Things that I can do to support my family. In this situation. Thank you again.

Social Security (Disability) approve $1165

Supplemental Security Income - SSI Disability. Approved But Suspended.

I usually can't get my mind to shut off so I can sleepso I have to take melatonin/ magnesium glycinate to allow me to rest to recharge to be able to do life the next day. Does anybody find it hard to sleep normally?

TLDR; Denied social security benefits. Currently at reconsideration level. Denial report done so poorly it should be an SNL skit. What recourse do I have?

I just received my social security denial explanation and the report is incomplete, misleading, and full of errors. How can I respond to it? At best, I want my case re-reviewed. But the report was so poorly done I think social security needs to do a performance review of the people who wrote it and signed off on it. It doesn't even apply their own policy interpretation that they published. What recourse do I have? Take it to my state rep? I think this person shouldn't be allowed to write any reports (and definitely not medical reports as a psychologist).

Here's a summary of the most egregious issues:

1. I became ill in 2018 and was disabled after getting COVID in 2022 (Dx Long COVID, POTS & ME/CFS). I submitted records going back years. However, the "findings of fact" only looked at some of most recent six months of medical records. The SS guidance has a list of things that need to be documented over time, so it's necessary to look at older records to satisfy their requirements.
2. Factual errors - Report cites medical records when I didn't have any doctor visit on that date or the days nearby. Can't tell if they just wrote down the date wrong or made stuff up. For example, there's a ferences a visit to physical therapy in a month in which I didn't go to PT at all. The report notes that I'm able to exercise 3x a week. False. It appears he conflated the goals section of the PT notes with what I was actually doing. He mentions the 3x week exercise three times in the report, so it was a repeat error.
3. The most troubling thing is that omitted most of my recent medical evidence from treating doctors including POTS specialist, cardiologist, rheumatologist. He mentions speech pathology five times (a provider I saw six times total) while omitting almost two dozen visits with medical doctors. These records include things like abnormal blood results that support my diagnoses. He skipped hundreds of pages of doctors making clinical observations that support POTS, ME/CFS and long covid, and then said I don't have enough medical evidence to support my claim. :/
4. Doctor statement - "The CE examiner's opinion is an overestimate of the severity of the individual's restrictions/limitations." Why the %&#! did they send me to an exam if they weren't going to believe their own doctor? Also, the opinion statement submitted by my rheumatologist is missing from the report (I confirmed SS has in my file). It lists limitations, and they aren't included in the job limitations section. Lastly, my cardiologist performed all my autonomic testing and has "hard" test results that support my conditions. SS said cardiologist's opinion is supported by the objective medical evidence and is partially consistent with the medical evidence in file." However, below that it states in conclusion, "The medical opinion contrasts with the other evidence in the record, which renders it less persuasive." Those two statements are inconsistent. (P.S. they put this conclusion for every doctor statement submitted.) Seems like no matter what the doctor says, including their won examiner, they say "renders it less persuasive."
5. The report says my primary diagnosis of POTS is unlikely alone to cause extreme fatigue. However, he completely omitted the diagnoses and supporting medical evidence for ME/CFS, which is a known cause of severe fatigue. I was diagnosed by 5 different providers with it, so it wasn't a one-off thing. SSA has a publication of what objective evidence doctors can document, and my records are full of it. But he didn't include those in the explanation or findings of fact. And he didn't apply their own social security guidance to my case.
6. Example of incomplete documentation:  "Clmt seen at neurology for botox injection for migraine tx. Neurologic exam was WNL with normal gait and ambulation."That's it. The explanation does not include key information from that visit, such as abnormal EMG, age advanced white matter disease on brain MRI, sinus disease, and 4mm tonsillar ectopia, reduced blood flow to brain during tilt table, orthostatic intolerance, dizziness, syncope, standing intolerance, post-prandial hypotension, palpitations, brain fog, and fatigue. The explanation also omitted the significant diagnosis of chronic migraine that greatly affects my function.  
7. Report states I can do laundry. My records only note that I can't do laundry and chores.
8. They skipped the most compelling evidence, which is six days of autonomic testing I had done at a specialized lab that showed positive tilt table for POTS, severe hypocapnia, abnormal ankle brachial index showing severe circulation impairment, breathing test positive for sympathetic nervous system failure, severely abnormal QEEG, and that I was severely below predicted maximal oxygen consumption on my cardiopulmonary exercise test. Additionally, there was a 61% decrease in blood flow to my brain when upright. The explanation also completely omits my experiences losing consciousness and fainting and injuring myself, which are documented in my records. This is grossly negligent.
9. I have orthostatic hypotension (low blood pressure) that is documented excessively in my records (they test me alll the time). Yet, he chose to use the one highest reading 130/84 to note that in the analysis - when my BP is typically closer to 100 and documented as low as 86/62 in the doctor's office.
10. Under Physical Residual Functional Capacity, it says I can occasionally climb stairs. My records only mention inability to climb stairs. My doctor's statement says I cannot stand or walk for long periods of time, cannot bend down or carry heavy items, I should not be sitting in one position without movement. The statement notes restrictions (e.g. things I should never do): carrying and lifting, bending, and squatting (due to dizziness and syncope). However, the Physical Residual Functional Capacity says I can do these things.
11. "Throughout numerous physical exams for comprehensive evaluation of Clmt's POTS in 2023, clmt consistently reported feelings of brain fog presenting most prominently as word-finding difficulties....Clmt began seen a Speech Language Therapist in early 2024 d/t continuing word finding difficulties." This is a false statement. My chief cognitive complaints were memory loss (e.g. forgetting food in the oven, events that happened in the past) and forgetting how to do simple tasks (e.g. open windows). "Word finding" is mentioned only once and the context was noted as a separate symptom from brain fog (not as the main presenting symptom of brain fog). 

If you're still reading this, thank you. I'm desperate to get social security disability so I can get health care. What recourse do I have? Should I go to the media with this? It's outrageous.

Ill be honest, I hate my body. I dont think I'm ugly, I don't think I'm weak, but I hate being deaf-blind, mentally ill, and being a brain tumor survivor.

This all happened in my mid-late 20s. And even then, I struggled with night blindness my entire life. Knowing I would go blind because of RP was a huge toll on me. It was like living my childhood knowing I had less time to make use of my vision.

Now, at 30, I feel anxiety about growing older. I feel like my body has aged faster than anyone else. All my athleticism from my youth is gone because of the brain tumor, and my mind is so tired.

I'm in the middle of a major mental health crisis and last month I was going to commit suicide (had to go through an intensive outpatient Hospitalization and am considering committing myself to a full Hospitalization).

I never thought I'd be 30 wishing I died. Living each day being alive while feeling like a corpse.

I was never the same especially after the brain tumor. My body never fully recovered.

I find it hard to accept growing older because I feel cheated out of my youth.

I’m looking to see if a disabled person like myself has any chances of ever meeting a nice woman who can be a good friend and maybe more. Ever since my accident my whole life was changed and not for the better.

I’m in So Cal, Ontario to be exact. Sbdo Co. it’s been really lonely since my accident and I’m looking for ideas if anyone can help me as to where I may be able to meet other disabled people who may need a friend. I used to be in shape and worked out daily but since My accident I can’t really go to the gym because everyone makes you feel uncomfortable and started gaining weight.

Anyways still sort of in shape just not toned like before. Looking to meet female friends to talk with or maybe hang out to do whatever disabled people can do together to try and enjoy life after a traumatic life changing event.

Any help would be appreciated and if you are a female that may want to be friends please do not hesitate to dm me..

I 40 (f) have been suffering with chronic pain for a long time with the pain becoming very bothersome this year. I essentially lived in denial of how bad it had become until this year and how it is impacting my mobility. I finally gave in and bought a cane today in preparation for an upcoming trip to Disney.

The thing is this is a family trip with my father who spent my entire life trying to fat shame me so I “would not become like my grandmother” who started experiencing severe issues with chronic pain and mobility at an early age and had symptoms consistent with an autoimmune disorder, yet, to my knowledge was never formally diagnosed with anything. This also is a man who forced me to stop wearing headphones at the dinner table (In autistic) because they “made him uncomfortable” then bought me headphones for that Christmas and who’s ableism and projection prevented me from seeking help for PTSD for decades because I felt like I was weak if I admitted to needing help even though it destroyed my life and potentially led to disability. He and my mother also refuse to acknowledge my autism despite being diagnosed with level 2 autism at the age of 39 and going through an insurmountable amount of abuse due to a personality disorder diagnosis starting at the age of 15 and extending to as recently as February of this year.

I know my father will say something when I bring the cane out and frankly this may very well be the sign I need to go no contact with him and the rest of my family. He recently refused to acknowledge how the timing of him triggering a flashback by picking a fight over the size of my bag corresponded with my second diverticulitis episode in less than 6 months, despite most people knowing that stress is a major contributing factor to diverticulitis flares.

It’s funny how purchasing a mobility aid to aid my chronic pain, likely made substantially worse by ongoing complex trauma and medical neglect as a child (everyone is shocked how I went so long with such significant autism and motor issues that were recognized at the age of 7) is almost a sign of empowerment for me. My family has taken everything from me due to their inability to remotely acknowledge their behavior over the years and they are coming for the last thing I have left, my body. It’s not my father gaslighting me to the point that I nearly killed myself and making my sexual assaults about him that triggered this sense of peace and empowerment. It a damn diverticulitis episode that may result in surgery and has resulted in a severe pain flare limiting my ability to enjoy something I love.

I’m going to use that damn cane at Disney and my father will just have to deal with it. He nearly took my life last year, he nearly took my chance to see the Eras tour, but he is not gonna take Disney. You know it’s a fucked up situation when I have to prepare a “safety plan” with my therapist prior to the trip just to keep my sanity.

And yes after the trip I am committed to going very low contact with the very real possibility of cutting off contact for good. I’m done with this bullshit, this ableism, this level of abuse. I (and also my sweet boyfriend) deserve more and that cane is where it is at.

I need to find a new one because every time I come to her with very real and very serious problems she just sort of huffs and puffs on the other end of the phone and condescendingly calls me "sweetie" and tells me that I need to find a way to deal with it better instead of helping me find solutions to fix the problems that are caused by the people that I'm supposed to be relying on for help.

That was a huge run-on sentence but I was trying to vent everything as quickly as possible.

Anybody else feel that way? Like we're just a paycheck and by asking them to do their job or inconveniencing them when they could be sitting on their asses all day collecting a paycheck for doing nothing and pretending like they're saints?

The bus system where I live charges $1.50 per ride normally but only 50¢ for people with disabilities. I have autism so I get the 50¢ rides so I’m definitely not complaining. Just confused on why there would be a price difference. Sorry if this is really obvious but I’ve been thinking about it and can’t figure out why. Does anyone know? Is it like this where you live too?

(F/32) I've got referred to Lifestance by my doctor.

How does the driver's evaluation work? Do you pass or fail? If I fail the evaluation do I get my permit revoked?

I have an appointment with them about my medication in two days and the next one is in January about the driver's evaluation.

I have autism for more context.

Has anyone gotten a driver's evaluation? Some insight would be nice.

Hello. I have adhd ocd and autism. I feel like I’m going to be weak because of it my entire life if not into the afterlife. And to anyone saying I cannot control it, it doesn’t matter. I need to control it. I’m unsure how but I refuse to believe in medicine since that itself is a constant reminder of the weaknesses I have. (Note I’m a minor) but really, should I even try at this point?

-especially at kids. I'm normally very nonconfrontational and will smile at babies and make funny faces at happy little ones but if you stare, old or young I will smile without my eyes and stare back into your soul. I've been given dirty looks and shocking gasps, especially the elderly. When you do it at adults they tend to go red or look at their feet. Occasionally a dirty look or a disgusted scrunched nose but I don't care. I will scar your children because unless you teach them to come up and politely ask (which if you raise kids that think DELIBERATELY rude questions are funny or appropriate, I will lie and tell them the most horrific and disgusting thing possible linked to something they probably do.), or to not stare at strangers because they look different?? Or use a god forgive mobility aid?? I will stare back. I'm a very apologetic person but this is my exception. This is my villain ark. I give no mercy. I feel no remorse XD

Paul Sager was climbing on June 5, 2023, when the rock he was on fell. He broke two vertebrates in his neck, and severely broke both his arms, shattering one.

"The accident left him tetraplegic, paralysed from the collarbones down, with only residual use of his hands."

Paul writes of his grief well. He doesn't feel like he is the same person. Mourning his apartment I could relate to, in a different way then he spoke of. He says he died on June 5th, 2023. He has this undercurrent of anger that I don't blame for. He seems to be in a state of shocked confusion about the things he misses. Paul says climbing was his one great love.

I am not a Tetraplegic or a Quadriplegic, so I think it's a bit weird that I related to some of Paul's frustration and grief and loss.

https://amp.theguardian.com/world/2024/nov/17/it-has-been-a-year-since-i-felt-joy-paul-sagar-on-coming-to-terms-with-the-climbing-accident-that-paralysed-him

https://diaryofapunter.substack.com/

I went to a rheumatologist today and she said i jsut barley missed the cut off for EDS not sure what parts. No one in my family has it though so it might be that. Though a family members mentioned dislocations and sprains before so she may have it. I didn't mention this to the doctor though because I honestly forgot. She said every part of my body is hyper mobile but my hands aren't "hyper mobile enough". my fingers aren't insanely hyper mobile as much as the rest of my body. she also checked for Piezogenic papules which i do have. I also have POTS. I take longer to heal then normal, especially sprains which i get frequently. And naturally intense chronic pain. I am 16 So i know the criteria is slightly higher I believe. however looking over the criteria myself I should meet all the requirements.

I don't know if being diagnosed as extremely hyper mobile compared to EDS makes a major difference though. I do not have any structural things wrong with my heart which would be the biggest worry either way (i've seen a cardiologist). I feel like if i had a diffrent doctor then i might have gotten diagnosed as An ER nurse has told me i likely have it as well as my pediatrician. I am following the Protcol for someone with EDS and POTS in physical thearpy that i'll have to secdule.

I guess i'm jsut wondering logistics of it all and if anyone knows what the main diffrence would really be between the 2 diagnoses and how i would go about possibly changing it in the future. I don't think i can get to that doctor for a couple more months because my parents are really bad about taking me to any doctor let alone beliving in my health. However I turn 18 in a year and a half or so and want to be able to set up a time plan for collage and anything i do need to do.

Im so overwhelmed right now honestly. I don't know if my parents will follow through with PT and I'm in pain and everything feels like it's crashing down. And a diagnosis is great don't get me wrong but I've had this one for months and my parents just haven't believed it. I honestly don't know why :').

Thank you for anyone who has read my rant if you have any questions let me know and i'll try to answer the best i can

I have difficulty walking and looking to buy a scooter tricycle. There are two and I cant make my mind up

One is £400 but it's 4mph (not sure if this is fast or slow in terms of motability scooters.

The other is £255 more and it's 8mph (is this legal for pavements and to cross the roads.)

The thing is I don't want to buy the 4mph and regret it with the speed and and the other one is more expensive which goes over my budget but I may be in that position where I'll have to buy it anyways later so better now ig.

I wish the normal street e scooters were publicly legal as they are much cheaper, would be a big help for disabled people.

Can anyone give advice please and if you know any motability tricycle scooters within budget please let me know.

Thanks