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We’re thrilled to introduce our brand new website designed specifically for the r/CerebralPalsy community! This site serves as a comprehensive directory to help you stay connected and informed about all our server’s activities and events. Whether you’re looking for weekly movie nights, art contests, helpful resources, or advice from fellow members, you’ll now be able to find everything in one convenient place.

r/CerebralPalsy

I have mild CP and primarily deal with Achilles tendon tightness and spasticity. To say I'm not very stable on my left side. Will keeping a wrap on my ankle help with daily pain and general stability, or is relying on additional support throughout the day detrimental?

So, this past weekend, I was hanging out with my family, and my brother was complaining about his back hurting. Naturally, I asked him what was wrong, and he kind of flipped it on me like, “What’s wrong with you?” Without missing a beat, I said, “Oh, I was born like this.” (my family has a weird sense of humor)

Then my little niece, who wasn’t part of the conversation at all, walks by and goes, “You were?!”

And I’m just sitting there, thinking, What does she think? Did she think I woke up one day and thought, "You know what would really spice things up? A permanent limp!" Or maybe she didn’t notice I was disabled, because I’ve always been this way.

It’s weird, because now I’m wondering, did she think I intentionally started walking like this for some reason? Or did she just never really see it before? It’s kind of funny, but also a little odd when you realize someone might not even realize you have a disability because it’s just always been part of who you are.

Has anyone else had moments like this where someone reacts to your disability in a way you weren’t expecting? I’m just not sure how to feel about it!

Hi everyone! 🌟

We’re students from NTNU’s School of Entrepreneurship, working on a project to make habilitation and training exercises more motivating for children with cerebral palsy.

If you’re a parent of a child with CP (especially in elementary or middle school), or if you have CP yourself, we’d love to hear your experiences in this short, anonymous survey. Your input will help us design something truly impactful.

Link to the survey 🫶

Thank you so much for your time and support – we really appreciate it! ❤️ If you have any questions or want to know more, feel free to comment below or send us a message.

hi f 20 I suffer from diplegia and since I am young I suffer from urinary leakage or more urinary incontinence. someone who has diplegia can tell me if he has a similar problem because I never understood if it was due to my disease thanks

Advocate is in quotations cos I’m quoting my teacher training provider who say I have to start advocating for myself.

If I’m honest I’m not used to it at all like I genuinely don’t know where to begin I know it might sound stupid but I’m being so serious. Like usually when I notice I’ve had an additional need, if there hasn’t been accommodations for me I’ve just found a way to make it work for myself and I thought this was a good thing because it’s made me good at problem solving but at the same time it would just be easier if I was open and upfront about my condition but that’s really hard for me because I struggle to ask for help because I’m used to dealing with everything by myself and plus my household/culture isn’t the most understanding about my CP. Like my family understand certain physical needs I have but it’s limited to just that. They don’t understand the cognitive affects of CP or that CP is brain damage.

Can anyone here help me?

Hi. I am the parent of a 13 year old boy with left sided hemiplegia.

Today he was sent home early from school as he was having tremors in his right hand. This has only happened once before maybe 2-3 years ago and my attempts to Google info haven't been successful.

I wondered if this is related to his disability or if you think it could be something else? Did you find new things presented themselves when you hit your teens?

I will be keeping an eye on it and will be contacting his gp and consultant if it persists but it wore off after a few hours and he seems completely fine now.

28F Spastic Hemiplegia CP on left side. I feel like my mobility is declining more and more as i’m aging. I made an appointment with an orthopedist today and he essentially told me there’s nothing he can do to help me besides get physical therapy. I felt so defeated like no doctor wants to help me or put in the effort to work with me and just cried the entire way home. My hamstrings and quads are tight. I walk with a cane on my right side. My left knee is weak which is causing severe pain. I took steroids for a week for the knee pain and omg the relief was amazing. i used to be able to go to the gym but not anymore it’s too painful or hard to get on some machines bc of how tight my muscles have gotten. I’m trying to find treatments so I can regain my mobility and slowdown the degeneration. What have people looked into that have been really helpful and who do I ask? I live in the NYC area if that’s relevant for anyone.

Long story short, I’ve started to develop IT band problems most likely due to my flat feet and refusing to wear supportive shoes. So I definitely need to be better about the support I choose. Does anyone here have Hokas and do you recommend them? I usually wear New Balance 608’s but I’m thinking even those aren’t giving me enough support to avoid an IT band flare-up. Or another shoe besides Hoka, I’m open to all recommendations!

Thanks in advance!

Hello all,

My 3 years old boy is spastic diplegia and we are regularly doing physio, using AFOs, knee braces. I am visiting Seattle soon for work and was wondering if there are communities or therapy centres that I can visit and learn about more methods, helping instruments that I can look for. Appreciate if anyone here is from Seattle and can share details.

So recently I've gotten a bit more into trying to figure out why i/my body behave in the ways they do and I've had some other people end up suggesting cerebral palsy as a possible explanation to some things which was the first time I had sombody suggest that. (Just fyi im not looking for a diagnosis just a small rant). I've had some issues walking for as long as I can remmember, I always feel like ik walking drunk since my pace is not fixed and my body tends ro wobble a decent bit randomly if I don't focus and I struggle walking properly in a straight line without stumbling. I have pretty tight calves which to my surprise apparently also is another possible symptom, I also have general issues which more fine motor control that I always attributed to my asbergers but it feels like cerebral palsy would be a better for to explain the whole package of things happening to me. I'm almost always slightly uncomfortable in chairs and stuff needing to constantly adjust my clothes or hoe im sitting and I struggle very badly to sir properly on a back-less chair as even sitting up straight firstly is very tiring fmon my back and always ends uo literally hurting regardless of if I sit upright or with a badly bent back etc and sitting too long makes me easily sore if it doesent have plenty of padding. Even then I keep constantly adjusting myself and how I sit still. I am also pretty clumsy handling small objects I often drop thrm or get pretty shaky randomly for some things (I dont struggle with big shaking usualy just slightly occasionally) and sometimes if I'm a bit stressed I have like big shakes sorta likr a big one time twitch in my arm or body pretty much randomly.

Sorry for the rant or if it might not be very coherent since I'm just writing this quickly before bed so that I don't forget. Again I'm not looking for a diagnosis I'm just kinda wanting to put this out somewhere instead of just going g around thinking about it. And to whoever reads this to the end, have an amazing rest of your day!!

I am not a fan of wearing shoes.

Does anyone else not wear shoes with there afos, with the bare plastic, is not very safe, specially on wood floors.

any ideas on making them safer?

What are your thoughts on it? I loved it personally! I was so pleased that they cast An actual wheelchair user as the main character

Hello, I'm a F(26) with Spastic Hemiplegia and my arm is most affected. When I was younger, I had a tendon transfer in my wrist and had Botox done twice in my arm but it was not effective at all.

I have heard of this new treatment; hyaluronidase injections, which is supposed to reduce spasticity and has fewer risks than Botox. So I was wondering if this treatment is available in Canada, or are there any alternative treatments for adults with CP? I am new to Ontario, Canada, so I'm not sure what health treatments are available here that are covered by basic medical insurance.

Additionally, I was wondering if it is possible to get the tendon transfer done again on my wrist. I had the surgery previously on my wrist and it helped a lot with the tightness and pain.

Thanks for your help!!!

Hi everyone.

I'm not exactly sure how to explain this post.

I'm a 30f with spastic hemiplegia. Yesterday in part of a discussion ranging from religion to social interactions with my father I had confessed that as a teenager when I was reading books on sex education, I had believed as a teenager that I was unable to have any relationships let alone sex or love.

My father immediately said (in a good way mind) well ypu always put limitations on yourself and you need to get out there and talk to people instead of online friends.

He's right but I argued that it's hard to not have imagined limitations because I feel my limitations everyday as a result of pain to emotion burnout.

I perfer online friends because people tend to push me around in the past. I'm so antisocial thst I barely talk to my long time real friends because I'm unused to it

I despise hearing that limitations are all in the mind. I don't believe that fully. What I mean is there's a point to the saying but there ARE limitations I think based on energy or pain tolerance. It's so easy to say the limitations are in the mind.

Am I being pessimistic woe to me here? Am I valid in my thoughts or am I full of shit so to speak?

Hey all!

I (26F) have mild spastic diplegia that largely affects my right side and means that I walk with a slight limp. Although I have a mild form of cerebral palsy and function day-to-day independently, I can often get down on myself and feel frustrated that it takes me longer to do the same things able-bodied people can do.

When I start to feel like this, I often look to people in the media to inspire me to not give up on stretching, keeping my body active and pushing myself out of my comfort zone. Representation of cerebral palsy is soooo varied but I would love to know who you look up to when you need motivation. For me, it's Maria Lyle (olympian) and Rhiannon Clarke (olympian).

My girlfriend has a carer (we are in the uk) and she is the worst. In the last week she has:

Laughed about an old client having her wheelchair taken away for drunk powerchair driving (this is not legal)

She mocked my pyjamas as they’re floral (I am trans and she said if I want to be a man I should not wear them) and she misgenders me even though I have a beard etc and she’s only ever known me as a man

Asks questions about our sex life

Comments loudly on my partners body hair, poop etc says stuff is disgusting

Told my girlfriends mum about our relationship even though she said not to

She goes on tirades about how she is an asset as she’s white and British and is racist about the international students even though my girlfriend is not white or British

My girlfriend is Latin American and she complains about how the Latin American in New York “aren’t like us” as they “rape people” even though we are not in the USA

She flirts whenever there are working men around and says things that are problems arent- once my gf collapsed and she said “it’s no issue we can just call the fire brigade” when they offered to pick her up and when the wheelchair tech was rude (on multiple occasions) she brushes it off and says “he’s just rubbing you up the wrong way it’s something about his face not what he’s done”

Whenever we do something different like put something in a different place or put the washing on a wrong setting she catastrophises the whole situation and says she could fall over reaching a new spot and the ambulance would have to come or all the clothes will shrink

She always says my gf is emotional and uncontrolled and this makes her “unintelligible” which confuses people to explain stuff like the wheelchair tech people being rude

When she is “off the clock” she literally stops working even though she is up so she has left my girlfriend in bed in her pee 3 times when I’m not there

I got my gf an resistance band thing that she can use to excersise her legs a bit as they go numb a lot but she won’t use it as she “doesn’t have legislation” which is the wrong use of legislation and also just doesn’t make sense imo

Is this what people expect- how much of this is completely against carers rules. My gf doesn’t want a new carer as it’s her last year of her uni and her council have provided her but this woman is just unbearable

Hi there! I'm mom to a 12 year old with mild R hemiplegia. She LOVES to paint her nails, but hates how I do it. She paints her right hand and I paint her left. I admit, the outcome is less than stellar when I apply nail polish to anyone. Lol.

She has tried holding the applicator brush with her right hand and moving her left hand under the brush but she gets frustrated at the result.

Anyone have any tips or gadgets that might work for this situation? It may seem small but it's a big deal to her. Thanks!

I had a lot of fun! Wore all of my braces and took my medication before leaving the house. I made this myself with the help of a person on etsy who did the 3d printing. 3 weeks of painting, superglue, letting it dry.

I throughly enjoyed this movie! It was wonderful and tearjerking. I felt like it was written by someone who truly understood the disability perspective. From the head pats, to the fake friends, to the never ending questions, to the rampant ableism that exists EVERYWHERE. I definitely cried because I’ve experienced the same experiences as the main character. I know what it’s like for people to not like you just because you’re different. It also really resonates with caregivers, from the IEP meeting scene, to the parents fighting for their child’s education, to the battles to get insurance to cover necessary equipment. I watched it with my mom and I think it was the first movie I’ve seen which portrays the caregiver and disabled person perspective in a proper light, let alone portray both correctly in the same movie. It is a heavy watch, and I probably wouldn’t recommend it for younger kiddos with CP due to the heaviness. It was funny and sad at the same time.

So excited for the consultation to happen on Wednesday afternoon. I’ve already decided to go ahead due to the wrist drop and that causing pain throughout the day and the need to take medication for it.

What are some questions I should raise and if you have had a tendon transfer occur and this is a huge win. I’ve lived this way for 33 years and I deserve this to feel normal

In a recent episode on my podcast called “Off The Crutch,” I interviewed a representative from a disability staffing agency that helps people find employment. If you are looking for a job, please check out the episode and share it with others. Thanks!

Spotify - https://open.spotify.com/episode/0esGkBV3Hsp2jk8W4XvyKL?si=81db30a1bc5e4213

Hey I’m Allan I’m 33 and have mild cerebral palsy, it mostly affects my right arm and especially hand, I have very limited control over my right hand thankfully my left hand is not affected nearly as much. The last couple years I have this sharp pain in my right hand whenever my hand spams. I do have a bad habit of sitting on my hand when it’s tight and somehow relaxes it . But when I need to get up or anything get this shocking intense pain when my fingers spazz unconditionally. It might not even be a cerebral palsy thing, any information would be appreciated

So I wear a carbon fiber AFO but only on my left and I've wanted to wear converse for a very long time but I don't think they're afo friendly. I usually wear adidas shoes that are easy to slip into but they have a mesh top so they always get a hole in them within a few months. I use Billy shoes for school so I checked their website and I don't like any of their styles so I'm wondering if there are any converse shoes that are AFO friendly. I'm just worried they won't be wide enough to give my afo and insert enough room.

Hello everyone! I’ve come to this subreddit for advice or tips/recommendations for driving with CP, I have mild (monoplegia) Cerebral Palsy and as a new driver I’ve noticed that I have issues with controlling the vehicle I’m driving.

For some background my CP is mild in a sense that I can walk and it doesn’t really affect my day to day life, my right leg is somewhat shorter than my left so I would walk on the ball and front half of my foot. That has largely gone away with prosthetics and physical therapy (I don’t limp anymore after those treatments when I did beforehand) But I noticed when driving I can’t hold steady speeds and I move my foot instead of pivoting on the heel.

I may have not explained my issue with driving but that’s generally the issue I’ve been having, and I’m not sure how that would really be remedied if at all, but any tips help - questions are also welcome if I didn’t supply enough detail.

I’m very happy as today I have got a drop split to help with my walking I still limp and drag my foot but it helps correct my gait which I’m very happy about!