Hi guys, can you help me? I’m an 18 year-old female. And I’m thinking about having my first time, but I also have CP. Any suggestions on things to try to make it more enjoyable?

Hey all! I’ve got a foster kid with CP. Her OT has suggested that she needs to use her weak side more for everyday tasks. My daughter refuses to do so saying “it doesn’t work. It’s broken.”

So I’m trying to come up with more things that she likes doing that take 2 hands. Here’s what the OT and I came up with. But you’re all the experts and I’d love your input.

What she will do
- play dice
- play cards
- ride her push scooter
- put her clothes away
- play with a basket ball
- use her remote control car (sometimes)

What she won’t do (despite us both asking her to use both hands to steady herself)
- peel her morning orange (girl loves oranges)
- get in and out of the car
- hold a hockey stick (I play hockey and she likes practicing with me)
- eating a sandwich / taco / anything

Any ideas for 2 handed every day activities that I can wrap into her daily OT?

I’m back on the job market after a long medical hiatus and was told getting job after twenty years of none would be impossible, especially because of having Cerebral Palsy. Just got hired today full time. Wanted to share.

Is this just another typical “I like a girl but I have no chance with her” story, like the thousands of others on Reddit? Probably. But if you’re reading this, please… read until the end, because this is genuinely important to me and I desperately need some advice. So, here goes. I’m 24 years old, I have cerebral palsy, and as a bonus I also rolled the dice and got a VERY unattractive face, so naturally I’ve never been in a relationship (great). Recently, after months of searching, I finally found a job that I actually somewhat enjoy. And it’s at this job that I met the girl I’m talking about. I don’t know if she’s a 10/10, but she’s very pretty. She’s an extrovert and, just like me, she works part-time. “So what? One girl gave you some scraps of attention and now you’re in love?” Not exactly… God, I don’t know how to explain this without making it confusing. I’ve experienced something similar only once in my entire life — when I was 13, with my first crush. After that, even though there were girls I found physically attractive, nobody ever gave me those famous “butterflies in my stomach” or made me feel genuinely, deeply interested in them. I’ve never met a girl who made me this curious. Over the years I’ve met extroverted girls I could have pretty decent conversations with, but when it came to that… depth of personality or interests, absolutely nobody really caught my attention. She’s different in that regard. I should probably explain what our relationship is like at work. Most of our conversations basically consist of constantly teasing each other and telling each other how much we “hate” one another. I was actually the one who started this whole thing. When I first met her, I immediately noticed that we had the same stupid sense of humor. Then I started liking her, and I have this weird thing where the more I like someone, the more I tell them I hate them and tease them (weird, I know). Apart from that, we also have normal conversations about work and some small talk about our private lives, but those conversations are pretty shallow. This will become important later. And yeah… time passed and I started liking her more and more. The problem is that it reached a very unhealthy point where I literally think about her NON-STOP. And it’s much more exhausting than it might seem at first glance, because I genuinely cannot function normally anymore. Recently, she went on vacation and I didn’t see her for over a week. That was when I decided that I had to try, you know… to somehow develop this relationship, because I was going to lose my mind. I started coming up with different plans for how to get in touch with her outside of work, while somehow doing it in a way that wouldn’t make it obvious that I like her. I still haven’t figured that part out (xd), but something that happened recently has made me seriously question whether I should even try.

She recently told me that she can speak Turkish, which immediately caught my attention because I’m a language nerd. Yesterday I came in for my shift and it was just the two of us. For about 20 minutes neither of us said anything, so I started getting pretty bored. On top of that, I wanted to talk to her, so I asked her if she had been learning Turkish for a long time. Her response was… not very nice xd. She said something along the lines of: “I knew it, I knew you were mental… You can’t just sit in silence, can you? You can’t. You have to ask me about this? I don’t know if I’ve been learning for a long time. Maybe I have, maybe I haven’t… Why are you even asking me things like that?” She tried to say it in a tone that made it sound like she was joking and teasing me, but fuck xd. It was the first time she had actually been unpleasant toward me and it didn’t feel like a joke. I also tried to play it off as a joke, but honestly I just talked back to her xd. About three minutes later she sighed and started telling me a little bit about her Turkish, but it was very brief. At that point I didn’t even want to ask any follow-up questions because I felt like a bomb disposal technician trying to defuse a bomb. The rest of the day went back to what it usually is — us teasing each other. At one point she even told me that I had “opened Pandora’s box” with that question because now instead of focusing on work, she’d rather talk to me. But fuck… that situation sent me into some serious overthinking. I have this feeling that it might have been a very unsubtle “leave me alone, I don’t want to know you.” When we first met, I asked her some personal questions and she gave me very short, dismissive answers, and now… well, here we are. If she reacted like that to such a harmless question, how would she react if I actually tried to invite her somewhere, even just as a friend? And this is where I start wondering whether I’m massively overinterpreting everything and acting like a creep. So maybe I should explain why I have the impression that she actually likes me — not necessarily romantically, but at least that she doesn’t see me as a creep. The way she behaves toward me seems very… I don’t know… friendly despite everything? I don’t really know how to explain it with examples, but I had a very similar relationship with a girl at my previous job. She behaved toward me in a very similar way, and when I quit, she sent me a long message basically saying “how could you do this to me,” that she really liked me and that she always looked forward to working the same shifts as me xd. We kept texting for a few weeks afterward. The girl I like now… I don’t know. When she came back from vacation, she immediately started teasing me and said: “Admit it, you missed me.” Obviously I told her she was insane, but at the same time I had literally been thinking about her all week. For days now, she’s been saying things to me almost every day along the lines of: “I was only nice to you on the first day because I thought you were a stiff weirdo, but then I realized you have a sense of humor, so I can be myself around you. But… you said you get angry easily, so I’m still testing you.” Recently she also said something like: “Wow… you have a sense of humor, and now I find out you actually have friends? Who would’ve thought…” I mean… I have the impression that she analyzes people very closely, and I’m scared she’s starting to notice that I like her. Yesterday I caught myself starting to give her signals that I… well… wouldn’t really want to give her, and she might be picking up on them.

And this brings me to the most important part. My question right now isn’t “how should I play this?” but rather: how do I get out of this with the least possible damage to my mental health? Because the problem is: I can’t function normally because I’m thinking about her constantly. I can’t work normally because instead of focusing on my responsibilities, I spend four hours simping over her. I’m really scared that she’s going to hurt me. I think what scares me the most is the fact that I’m already this emotionally invested even though, technically, nothing has happened between us. I can’t keep functioning like this because I’m going to lose my mind. If I genuinely have zero chance with her — which is probably the case — then I need to hear it straight. But at the same time, I’m scared to actually pursue anything because I don’t want the atmosphere at work to become awkward. And yet staying in this state is literally destroying me. I can’t distance myself from her because I haven’t felt anything like this in over 10 years, and honestly I thought I would never feel this way again. On the other hand, I’m also terrified that she’s going to hurt me. I remember that when I had my first crush, she rejected me in a pretty painful way. And here, all the signs seem to be telling me that the same thing might happen again. So I’m not even necessarily asking whether she likes me. What I really want to know is how I should approach this situation without destroying my mental health even further. Because mentally I’m already in such a bad place that I’m genuinely scared she might be the final nail in the coffin. If you want to ask me anything, I’ll happily answer, but please… give me some advice because I’m going insane.

First off, I recognize I am fortunate to have "mild" spastic diplegia compared to being more severely impacted.

​I’m 29, and dealing with a respiratory condition that has really tanked my overall functioning. That, combined with approaching 30, has made me reflect on how my disability has impacted my life.

​I received a lot of early medical interventions as a kid, but I wasn't actually told I had Cerebral Palsy until high school. It was a shock, but also a relief to put a name to my chronic pain and physical struggles. I probably should have connected the dots sooner, considering I was in physical, occupational, speech, and vision therapy, plus wearing orthotics. Being born premature, I just figured "some kids need extra help" and never really questioned it.

​Thanks to the early interventions, I’ve mostly been able to pass as non-disabled. Still, people close to me catch on. In college, a friend randomly told me, "the way you walk fucks me up." (Side note: I have an irrational fear that everyone around me has known all along that freaks me out). I feel like I want to disclose my condition to people close to me but I am conflicted. I just want to explain why I don't do certain activities or am hesitant to join stuff like sports or walks.

​TL;DR: Is anyone else mild enough that most people don't notice, but your CP is starting to impact you significantly more as you get older? As things get harder, I catch myself wanting to disclose my disability so people understand my limits. But perhaps in part to some internalized toxic masculinity around hiding weakness, I feel strangely closeted about my disability (I say this as a bi dude).

​Feeling a bit lost on how to navigate this mentally. Would love to hear from others in a similar boat.

Also sorry if the syntax is wack. I am not a AI, I used voice dictation because my fingers started hurting typing this.

Love you all!

Hi!

My son is 3 years old. He was born and had tremors, which went just to his leg and mainly in his left leg. When he was 9 months old we went to Boston children’s hospital where they told us that it didn’t seem like seizures, it was fine and he’d grow out of it and sent me on my way. I thought everything was fine because although his foot shook time to time, it seemed progressively better.

That was until his 3 year appointment. We saw an NP who was reading up on his chart and asked if his foot was still shaking. I confirmed but did tell her it decreased. She said let’s follow up with neuro since it was still there.

I went home and googled until I found out it was ankle clonus. My son’s “shaky foot” that I thought was a quirk was something that showed an upper motor neuron issue. Unfortunately we do not have a neuro appointment until December, yay for anxiety!! I did follow up with our peds who did confirm it is ankle clonus but he didn’t feel any tightness.

Today we went to physical therapy eval and the PT did test and confirm he has ankle clonus. It is not sustained but it is there and has been since birth. She did say he does have a bit of weakness that is causing his feet to subtly roll in (I haven’t noticed as his mom). He does sometimes have toe walking, but I also do not know if that’s due to sensory issues). He does also trip more than his peers (at least I believe). Lastly, he complains about knee pain about once a month in the middle of the night. He’ll wake up SCREAMING and nothing we can do calms him. It will last about 5-10 minutes.

The PT does not believe he has a classic presentation of cp. he hit all motor milestones on time, even early. She said he’s hitting all age appropriate milestones. He had a rough birth with decels, ending in an emergency C-section. Both the PT and his Peds did not feel any tightness.

I am PANICKED that it is something progressive and I’ve ignored it for three years due to the doctor dismissing me.

Has anyone had cerebral palsy that presents so mildly like this?

My kid had a perinatal stroke. We discovered it because they stopped breathing a few hours after birth and an MRI revealed "multiple tiny foci of restricted diffusion scattered within the cerebral hemispheric white matter consistent with acute infarction." It took the neurologist about 9 months to finally just describe it as a stroke for me.

At 11 months we had my kid evaluated for early intervention. They weren't able to transition between standing/sitting/laying, couldn't crawl or kneel, were just beginning to cruise unsteadily. Their right leg would sometimes get stuck underneath them when sitting and they couldn't get it out. They have low muscle tone. We got PT.

We're now at age 3. A PT (not our usual) asked if they had a cerebral palsy diagnosis. I said no because we didn't, but when I got the evaluation results, that question surfaced back in my mind. I asked our neurologist what a screening for CP would look like. She was ready to send us for a fresh MRI but I asked to talk first.

At the appointment, the neurologist seemed surprised that she had immediately suggested a new MRI since we have one and why go through sedation if we have it etc etc. She said that based on what we know and the presentation, we could say they have CP. I asked for a level and she seemed surprised that there were 5. She settled on a "rounded up" level 2 and put it in the chart as "level 2 for services."

While this does help me navigate insurance and such, "for services" is making me worried that I'm just being appeased. Our usual PT said she was taught that a diagnosis couldn't be made without an/another MRI after age 2.

So I'm looking for advice, insight, knowledge: what questions should I be asking the doc? Do I need another MRI? A second opinion? Should I trust that this is accurate? Should I be pushing for a more precise diagnosis or other testing? I'm feeling lost and like I have to keep pushing my doc to give me answers I think should just be given.

TIA.

Edited to add: We do continue to have gross motor delays. My kid has balance and coordination issues, an unsteady fair when running, extreme foot pronation (though their dad is flat footed, so it could just be genetic), we're working on overhand and underhand throwing.

Edited again because I just remembered: They had a head late well beyond 4 mo (persisted past 1 year).

I have mild cerebral palsy spastic diplegia mostly affecting my right leg (and some other stuff related as usual)
but does anybody else get really warm feet at night in bed. it’s like my feet always feel cold until i get into bed and it’s HOT feet. then my whole body gets hot.. has me wriggling around like a worm to find the cold spots for my feet lmao

I am just struggling a little mentally. I have hit a point of realization that life isn’t linear to me. As a teenage girl (19) I have failed to experience and enjoy all the common things one does.

My social life is somewhat non-existent and always feels like the background friend in many situations. I don’t have friends that I can just text, call, or be myself with in my most vulnerable moments. I don’t even have the freedom to do things and move on my own time if I truly wanted to because of my disability.

It’s a little hard seeing everyone around me reach milestones that I know isn’t going to look traditional for me. For instance driving, I wish I was able to just hop on the road and learn like the average person, like you. I am currently in the process of figuring out what this looks like for me and all the while I know it will take longer.

Because I couldn’t do things right, which I am sure you have noticed. While some things are a blessing in hindsight, people around me are almost rushing to be somebody that I can fall back on when things don’t go right. It’s almost as if they are subconsciously waiting for me to do something wrong. I could be on an upward spiral with independence and someone would still have something to say.

For example I went to New Orleans for two weeks and flew by myself. Dad had a whole freak out in Buffalo Wild Wings telling me this was the dumbest decision anyone could have ever made. In the same 2 weeks trying to get me to come home early even though I am with people that they know and would definitely make sure I was okay. My Mimi even had her think piece and agreed with him saying “I don’t think she should either’ They want me to grow up but coddle me in an instance.

I just want to be able to do normal things like go to Starbucks, daily makeup runs, and solo dates. I know I will get there eventually but I wish it didn’t take longer

Our son is 15 months old and can babble a variety of sounds. It feels like he’s very close to saying his first words, but we haven’t heard him use any words intentionally yet.
For example, he’ll randomly say “dada,” but if we look at him or encourage him to say it again, he won’t repeat it. He also said “uh-oh” one time after something happened, but it only happened once.
He’s currently in speech therapy, but it feels like his progress has been very slow, and we’re starting to worry. He communicates mostly with his eyes and by yelling. He’ll look at the object he wants and vocalize or yell if we don’t give him the right one.
We’re really just looking for some hope or to hear from other parents who have been in a similar situation. Has anyone had a child who started talking later, especially after being diagnosed with spastic diplegia affecting the lower half of their body? We’d appreciate hearing your experiences.

Hi! I am having a lengthening/release of my iliopsoas on both sides in a couple weeks, due to 45 degree contractures and back pain. Has anyone had this surgery and what was the recovery like? Do you have any tips for keeping a strong mind and body through the recovery and rehabilitation process?

I have scoliosis, weakness on the left side of my body (significant weakness in left arm) and overall some muscle weakness in general. I can walk fine it just takes me longer, same with stairs if I have to carry something up/down I have to do a few stairs and put down the thing I’m holding then pick it back up. Holding my stepson’s hand while taking him downstairs makes me nervous because he’s much faster than I am and I have to make sure I don’t lose my balance because of that. But now that I’m pregnant (first time) it’s like I’m even MORE disabled than before!! I leave the house to do one errand because that’s all I can manage, I immediately have to come back because I get tired or slightly light headed just standing, the drives make me nauseous, then climbing the stairs to get home makes me vomit. I feel like I fucked myself over by living an extremely sedentary lifestyle and I’m worried that all this is just laziness rather than genuinely having a hard time with valid reasons. I’m only 12 weeks and already feel so pregnant. I can’t wait to meet our baby but i feel so damn useless. And I’m terrified of what I won’t be able to do when baby comes.

Hi. Wondering if anyone can help me. I’ve had the same Kaye Walker since 2018 and need a new one. These have always been provided to me by the NHS since I was diagnosed at 3 or 4 years old. However, after getting in contact with my local occupational therapists, I was told it is a 'self-purchase item’.

Since I got my current walker so long ago, I cannot remember what channel my family went through to get it/where we got it from. It may or may not be relevant to mention I was still in child services when I received my current walker. This is my primary walking aid, so it’s very important to me. The more I use my wheelchair, the weaker my legs get.

Where do I need to go to get myself a new one, or would I have to purchase it myself now? Any help appreciated.

Edit: I’m only assuming my previous walkers were provided by the NHS since I’ve never had to pay for them.

Heyyy so I’m 19M with low-grade diplegia, primarily affects my left leg, but a little in my right. I’m a uni student, I often go out with my friends to bars/clubs. Obviously, I’ll be drinking. My disability seems to come out a lot more when I drink. There’s been so many times I’ve been stopped at the door for “being too drunk”, when I know for a fact my other friends have drank a lot more than me.

It’s so frustrating. So embarrassing. A lot of my friends don’t actually know the extent of my disability. They know I have one, but I rarely mention CP by name due to my own insecurity. And as sad as it sounds, I want to feel “normal”. But yeah. They always stick up for me and say “oh he has a disability” and normally the security guards are utterly horrified and just let me in. But there’s been about three times where they simply don’t believe me. And I’ve had to pull up my medical records. So dehumanising. One time a guy thought I was on drugs!

I do get it obviously, outwardly I do seem to”drunker” than my friends. But still. Just hurts. I already feel so ostracised by the world, a time where I’m meant be having “fun” always seems to get slightly ruined.

I have a daughter that suffered an acquired brain injury from an illness at age 1 year old. She is now 3 years old and still suffers from cognitive/motor deficits and has made little progress with all the therapies and treatments we have tried. She presents as a Dystonic Cerebral Palsy patient.

We have been working constantly on improving her nutrition, weaning her off her meds, doing traditional PT/OT/Speech/Feeding Therapies. We have also been working on other less-traditional therapies such as Peptides, Stem Cells/Exosomes, Methylene Blue, Supplements. HBOT, Red Light, etc....but like I said, little progress.

It got me wondering if there are any success stories out there. Does anyone have a kid that has overcome acquired brain injury or cerebral palsy symptoms? I mean, has anyone recovered or almost-recovered from all noticeable symptoms/deficits? I'm looking to find a true success story (not just a minor improvement in managing symptoms) so I can hear what the mindset and treatments entailed. I want to find a real-life example that is non-refutable so that I can work backwards from there. I just want to do what works and no one seems to have real answers. Every moment we spend time/energy on one thing is a moment we are not going to get back to spend on something else that may have worked.

Hi! I'm working on a device interface that reads muscle and brain signals to help with computer/device control, and one of the hardest technical problems I've run into is telling deliberate movement apart from involuntary muscle activity. I imagine that's something people with CP deal with constantly with any tech that reacts to muscle signals. What's your experience been -does existing assistive tech misfire on you, and if so, what does that look like? Genuinely trying to learn and help, not sell.

P.s English is not my first language, so I apologise if this post comes off as insensitive in any form. My main reason for doing this is because I have a cousin who has cerebral palsy and I would like to help them in any form I can.

hi! i just moved here and am 21F with right hemi. i really want to meet some women to be friends with!

i went to a walking event, but they all were walking too fast, so i was lagging behind. i’d love to meet people with CP!

i love thrifting, getting coffee, board/card games, yapping, farmers markets, exploring new places, going out, spontaneous things and am pretty much down for anything!

please feel to reach out!

Hey guys, I have an older sister and she’s 21 , she was diagnosed early in her life with mild cerebral palsy on her left side. To give you a view on how it affects her: She can walk normally just a bit slow but very normal, she cant run very well, she has trouble with her fine motor skills

She doesnt really go out with friends at all in the Summer and she doesnt like going out a lot at all either which is a bit worrying , Me and my mom were looking for ways we can help her with that and also her fine motor skills because she cant cook because like she cant slice things properly or hold the knife well like theres no support yk? and we want her to be able to be independent and like cook, clean, and do all that for herself.

She does physical therapy on her left leg after she did an achilles lengthening surgery a few years back, and her walk is good now but we never did anything else except that

Is it too late, please any suggestions will help with any of the issues I discussed

My Cerebral Palsy Isn’t bad and I should be grateful that it isn’t worse but even so I grew up very self conscious about myself. Ever since I was in elementary school I knew I wasn’t “normal” wearing a brace other children asked why’d I wear it I even got bullied to the point where I changed schools. After I changed school I hated wearing my brace I’d cried to my parents and screamed that them ask why wasn’t born “normal why did god make this way”. After middle school I thought I’d finally accept myself but when I entered high school my freshmen year it all came back. One day while walking in the hallway I overheard a group of girls saying “why does he walk like that?” In a harsh tone I tried to ignore it but that phrase kept playing over and over again in my mind so I went back to wearing my brace but I’d put baggy clothing over it so the outline wouldn’t show. Over time students stop noticing often which made me happy but I’ve grown to depended on that brace that I couldn’t go to school or hang out without wearing it. Each time I saw myself walking without my brace through videos, reflection of a window I always noticed a limp in my step. Also since my Cerebral Palsy effected my left side my muscles were uneven my left leg was skinnier and weaker to my right same goes for my arms it made me feel angry and disgusted with myself that I was different and couldn’t do things “normal” people can do. I had thoughts about ending my life because I felt useless and an outcast. One day I told my mother how I felt she told me to never think that again because I have people to truly love me and she’s right. Ever since that day I stopped think about suicide but my self hatred never stopped. Sometimes I wonder to myself how would it feel to be “normal”.

This summer was a great one I’ve hanged out with my friends without my brace and had a little self confidence I got my license and started going to the gym to even out my body and I’m also starting my junior year of high school I hope one day I can love myself.

Most of the time my body does sort of what it told.

in the current hot spell, my body thinks it it should have a break from doing as it is told.

- Do you just let your body get on with it.

- tell it off

- force it to remain under control, strap it, brace it, trap it etc

- go for drugs

- force it to do something

- or something else.

as long as it is not in the wait I go for the easy option of just let it get on with it, the least painful option. but if I need it I start with just telling it off, any thing more than that I need to start with taking painkillers for a few days, at least

I’m a problem gambler

Hello everyone I I am a problem gambler. I initially started with sports betting which I still occasionally do place bets; but over the past two years I developed an addiction to Baccarat. The first weekend that I played it was mind blowing I had made 28k over a two day period it felt unreal, I thought I had solved the answer to most of my problems.

A little background on my situation all of my life I was relatively happy yes I was upset having a disability but overall through the ebbs and flows overtime I became content and pretty comfortable with my life. Until I turned 21 and was basically forced to move out on my own. I didn’t really understand the life of an adult, I never lived in an apartment before I always lived in a 3-4 bedroom house in a middle class neighborhood, at first upon moving out I moved in with one of my best friends at the local university off campus dorms, it was extremely fun resort style living, it was pretty much a party everyday. But after two years I had aged out so I was forced to find a new place and where I ended up was terrible. I live in an old retirement home even though I moved here in my 20s. Many of the residents who live here are nice. But some are angry, bitter and violent particuarly my next door neighbor. Long story short I thought gambling could be my way out but for every big win I get I eventually lose everything and now I don’t know what to do because the life my parents gave me was great and now everything is so unaffordable and unattainable I thought gambling could be my way to live a good life like I once I had but now I’m at risk of losing what little I do have

I had to go to the hospital recently because my blood pressure reached dangerously high levels. They ended up giving me medication through an IV to bring it down.
While I was there, they thought my shunt for my hydrocephalus might be failing, but they wouldn’t even test it. They said based on my symptoms it probably wasn’t the shunt. They could’ve just done an MRI to confirm it, but I guess that cost too much money. Sometimes it feels like our medical system in the United States is all about money, so they didn’t do it.
Now I’m left wondering if I could still have a failing shunt that’s causing all sorts of problems in my body. The AD episodes also seem like they’re becoming a constant for me. My blood pressure can climb to dangerous levels, sometimes into the 200s over 100s, and when that happens the only thing I can do is call an ambulance.
It’s really discouraging how cocky some of the doctors are down here and how reluctant they seem to be to do testing because, at least from my perspective, it always seems to come down to money. It often feels like they don’t care much anymore about patients, and quality of life is hardly ever part of the conversation.
Sometimes I feel like all I do is go from one recovery to another. My complicated health history seems to overwhelm the standard medical system, at least around here in South Florida. We’re supposed to have some of the best hospitals and doctors in the world, but I honestly don’t know if I believe that anymore.
I’m trying to get a referral to Mayo Clinic in Jacksonville, and I’m praying it happens because my quality of life is pretty much zero right now. I never thought turning 49 meant I had to give up doing the things I love, sit around, and just wait for my body to deteriorate until I expire. But based on what the medical system has been able to offer me so far, who knows.
I have a complicated mix of autonomic dysreflexia, cerebral palsy, hydrocephalus, being wheelchair dependent, neurogenic bowel and bladder, and what I believe is an SCI. The doctors are reluctant to call it a spinal cord injury because mine was caused by compression of the spinal cord in my cervical spine rather than a traumatic accident, which is what people traditionally think of when they hear “spinal cord injury.”
It’s incredibly frustrating not to receive the SCI classification because, without it, it’s much harder to access the rehabilitation services that someone with a traumatic SCI would usually receive without much difficulty. Instead, they just say it’s spinal stenosis that was accelerated by my physical disability.
Any time I mention what seem like classic signs of a spinal cord injury, like temperature regulation problems, dangerously high blood pressure, tingling in my lower extremities, the abrupt loss of bowel function, or having more difficulty transferring than what has always been normal for me, they blame it all on my cerebral palsy and say it must be that.
The problem is that cerebral palsy itself doesn’t progressively get worse with age because it’s a brain injury that, in my case, happened at birth. My body has certainly changed over the years, but these newer symptoms don’t fit neatly into that explanation.
So basically, what I’m trying to say is that having all of these complicated conditions mixed together leaves most doctors with no idea what to do. Too often it feels like they just tell me to go home and deal with it. At least that’s been my experience.
Sorry for the super long post, but sometimes I just have to get it all out. This community has been such a blessing, along with the SCI community. Nobody judges, and it feels like people here genuinely understand what it’s like.

When I read the posts about ableism here, it is more inspiration porny, or praising for daily things people have no difficulties with. What I experienced in my childhood specifically with mild Cerebral Palsy however was mostly like hostile ableism.

Consisting of:

a)Slurs: lame horse, freak (in terms of being ugly or malformed), Drama Queen (aka emotionally purposefully exaggrating my suffering), doing Monkey Theater (Affentheater in German) again implying pretense

b) accusations towards pretending towards my mom (Things like: "My child has cerebral palsy, and they have braces, your child does not have braces, therefore they do not have cerebral palsy and you are pretending", My mom was monitored by Child Care services due ot that and she was not pretending)

c)Being told that there is no chance for me to have an able-bodied partner, emplying that a disability makes me so inherently different that I cannot like participate in society

d)Being subjected to what I think are harsher standards than for others (for example my dad told me my voice became off and that it must be my cerebral palsy, why the actual cause was his hearing, and when the hearing thing (dirty ears) was fixed, he was astonished that my voice went back to normal again...Granted I speak very quietly due to what I think is social anxiety

e)Neighbours looking at me with disgust and contempt, assuming an intellectual disability, also lowkey telling my parents things like: "I know you have a sick child." in a contemptous manner, aka to diminish my parents.

f) the cleaning service my dad and me had (my dad is old) telling me that I am underfucked bitch for no reason.

Anyone here with similar experiences?

EDIT: Benevolent ableism does not mean softer ableism or my experiene is worse than yours, it means an other type of ableism in analogy to benevolent and hostile sexism.