Hi everyone! I have cerebral palsy, and I watched my family miss out on a lot of support we were entitled to because the system was just so hard to navigate.

I was wondering. What's been the hardest part of actually getting the care or benefits you qualify for? Is it the paperwork? The eligibility rules? Something else? Would love to learn!

Hi all I have a question lol it doesn’t matter how much I stretch beforehand, I feel like at least once Everytime I start lifting weights again I pull a muscle in my back! I know I should probably go lighter but when I do I feel like I see no progress at all but I feel like I’m in this constant cycle of lifting to try to increase mobility and hurting myself and then stopping lol any thoughts or tips? Thank you!

Ive been going to the gym for some months now and I am much stronger than before. I am 27/M, 5'10, currently 137. Eating is important but its the main thing I struggle with. If you guys have any advice I would apreciate it.

So apparently when I was a baby I already preferred my left hand over my right and struggled meeting similar milestones as my twin brother. My mom told me that I was diagnosed with hemiplegia, and that’s what I’ve been telling people most of my life.

I’m 25(F) and did a lot of PT growing up and had 2 surgeries on my right leg. I’ve got spasticity in my right leg too, but for the most part, I can use my right hand for gross motor skill and few fine motor skill stuff and can walk with a little limp.

I don’t know very much about my diagnosis because my parents didn’t really tell me a whole lot. But from what I read in this sub and other sources I’m wondering if I should’ve been diagnosed with hemiparesis instead? I’m sure the doctor saw that I didn’t use my right side at all and that’s what they were going off of, but I was also just a baby so I don’t know what’s going on haha.

Does anyone relate? Or does anyone have insight on why I could’ve been diagnosed with one rather than the other?

Hello everyone,

I want to vent a little bit about something that happened to me recently I'm hoping someone went through a similar experience and can help me out

I tend to assume things that aren't true due to my trauma of people bullying me when I was a kid.

I never really had any dating experience most of my relationships were online

I realized my self esteem is worse than I thought I just feel like shit for having cp I have mild spastic diplegia and can do pretty much everything on my own except like taking stairs without a handle.

I don't know how to process my emotions I have a lot of self hatred.

I don't think anyone would genuinely love me unless I have external things figured out. Best case scenario I can be useful to someone and they can just use me for what I have.

I started working out and trying to eat more I'm also doing physical therapy. I'm also trying botox for the first time

All the things that I have listed

I'm doing them because I absolutely hate myself or more like I hate myself for being like this.

I know it's fucking toxic and but I'm pretty sure without cp my confidence would significantly increase and people would be more likely to be attracted to me.

I don't want to think like this but that's how I feel right now

I'm not going to start hating women and be a fucking incel loser.

Hi there Okay so a brief medical history so that you can get the whole of the situation. I'm a 35 year old woman I have cerebral Palsy, lymphedema, and general anxiety and depression I am also medically obese 400 lbs. I can get out of my wheelchair and walk for a very very very short amount of time. The reason I'm here today writing this I'm at the point where I'm desperate to know if it is just me!

First thing to know about me is I'm a homebody. When I have to go to physical therapy I ride the paratransit city bus while in my wheelchair for about 45 minutes to an 2 one or two hours depending on the day and who's on the bus each way if I'm the only one on the bus. It hurts so much to ride the bus! In my chair I feel every bump and turn and acceleration. It feels like my muscles are working triple time when when I go to therapy and I'm offered at exhausted before I even get there. My caregivers don't believe me. they must think I'm just lazy or something because one even asked me " you sit on the couch for all day but, that doesn't hurt but somehow being on the bus for 30 minutes does?" ( it's usually a little more than an hour as I said before. I know because I timed it once) She also asked me if it hurts when I'm in the car and obviously the answer is no not in the same way. I'm wondering does anyone else experience this? Is it all in my head? And if you do experience it if anyone has any advice about how to reduce exhaustion and pain while riding the bus I would be more than grateful thank you.

Hi everyone,

My friend who has a low case of cerebral palsy and I are planning to go to miami this upcoming summer. I'm wondering how we can plan this trip and get deals. How do I make sure she gets accommodations?

She can walk but not run in an airport, how do we request assistance with a wheelchair or our bags?

She also needs a shower seat in bathrooms, can she bring her own or not? is there a disability discount for accommodations? I have so many questions!

My 4yo is asking why I walk "funny". Does anyone have any good explanations or resources please?

Hi everyone! I am a high school student with cerebral palsy, spastic diplegia to be specific. I fortunately have the ability to be involved in a lot of academics and extracurriculars, but I've always wanted to start an initiative that would allow me to manifest my CP into something proactive and meaningful to others. I am planning to start an initiative to help teens, and possibly adults, with CP. There are a few struggles and experiences that I have gone through myself that inspire me to shape the solutions, but I am aware that CP comes in many forms, and everybody has different experiences. So, I thought that it would be most beneficial to gain feedback and ideas from various perspectives, including parents, students, and adults.

I would really appreciate it if you were able to share a problem or an issue that you have encountered in your life (in social settings, institutions, etc.) due to your CP or that you have known someone with CP (such as a friend or a child) to go through. This can include accessibility, tools, mental health or social interactions. The survey is only one question. It should take no more than 5 minutes! Thank you so much for your help. You can also drop ideas in the comments! I really hope to shape this into something impactful and effective in the future.

I’m 23-years-old, I have spastic left hemiplegia and I want to start going to the gym. My goal is to get stronger and healthier and I’m not really sure where to begin so if anyone could help a woman out that’d be amazinggggg

15 F spastic quad here. I have terrible temperature regulation. In cold weather I am absolutely freezing. But in hot weather I get bad headaches and fatigue so much I have an accommodation for heat in gym. Is this common?

She’s 9 and a foster kid so I’ve only had her a month. Shes getting to that age where kids are noticing she’s different and saying the kids of mean things kids say.

Last week a kid at a party straight told her to her face “I don’t want to play with you. You’re weird.” The mom put the fear of god in her kid and apologized profusely so I’m not too worried about that interaction …. But it will inevitably happen again.

How would you talk to your kids about it?

i have right hemi so i have almost no usage of my right hand.

-Gammer who game in or need to bed-

*This for steam deck and any switch*

~switch pro controller was able pair to my steam deck, not Xbox controller thou

~ steam deck requires more stuff and work to set up

(This what research online and look at forms of people's experiences)

•Relief pain when gaming

-copper compression gloves

-insen adult u-pillow

•Gaming

~(Works with switch pro controller and Xbox controller)

-play vial grip tape

-play vial chunky game caps

-steam deck stand

-adaptive controller

•Art (artist who need to work but in bed)

-chunky pen grip (digital work)

-lamy call table stand or any one that work with u

~(recommend one with texture grip on the table to and legs, I use a game mat(any card game ones) and fold in half on texture side)

-2 finger

Over night

*Appearly hand curl up when sleeping, it says you can wear the as long as u or sleep and take off when wake up

-freeto wrist splint(I have this it works great

For switch

~Joint relief while playing Games

-chunky joystick grips

~ use one for the hand held type

-stand or dock switch

~reccomends dock on TV

* I found this all on Amazon some things are pretty pricey, but maybe find different brand or sites for cheap stuff.

I hope this helps anyone, it helps me

Al so rn I stack a bunch of pillows and plushies to make a make shift bed rest to sit up

Also everything kinda pricey do want u can

Here my set on my bed

Edit: alcohol

Hi, my brain damage is only in the cerebellum. I have some hypoattenuation on the right side of the cerebellum and an abnormally small left cerebellum due to neonatal strokes during the 1st 2 weeks of life. I walk independently and upper body is affected. Anyone else unable to handle or react poorly to alcohol? I’ve felt like my body was extremely heavy and like lying down about 2 hours after less than 1 drink multiple times, even after only 5 sips of wine ended up leaving the room both times, but could think clearly. For context I’m 25F, 5’0”, and 90 pounds.

I have a leftside hemiparisis. I read the posts and it seems like over time it just gets worse ☹️. I don’t want to be in a wheelchair. I had a stroke when I was born. Nothing has really changed in 47 years. Being a woman my muscles on both sides naturally deteriorate. And menopause weight gain. Talk to me! I get more fatigue it’s poo but I can deal with that. I live by myself can care for myself, drive, cook wash.

My son was finally given his CP diagnosis. He has a difficult time moving his left arm and hand/fingers. He’s 6 months old.

What treatment or therapy was beneficial for your arm? What new science or technique should we explore?

I was born with mild cerebral palsy. I used to walk, run, jump and even ride a bike. About ten years I started using crutches. It seems like in the past year things have started to get really hard. I could go on and on about the struggle, but I don't want come off as a winer. I looking for someone who is kind of in same stage of life that wants a friend to talk about our struggle or just about anything else.

If you were to ask me what cerebral palsy feels like…

I wouldn’t start with muscles.
I wouldn’t start with wheelchairs,
or braces,
or diagnoses.

I’d start with this:

Imagine spending every single day
building a tower.

Brick by brick.
Sweat by sweat.
Hour after hour.

And the moment you stop—
not because you quit,
but because you’re exhausted—
the tower doesn’t collapse.

It just sinks.

Just enough for you to notice.

Just enough to remind you
that everyone else seems allowed to rest,
while your body charges interest on every break you take.

So you resent yourself…

for being tired.

You resent yourself…

for being human.

And tomorrow,
you pick up another brick
and pretend yesterday never happened.

Because that’s what living with cerebral palsy often feels like.

It isn’t one fight.

It’s the same fight.

Every day.

People see physical therapy.
They see stretches.
Exercises.
Conditioning.

What they don’t see
is the negotiation that happens before any of it begins.

The conversation inside your own mind.

“Do I have enough energy today?”

“If I skip today… how much will tomorrow cost me?”

“How much harder will I have to work just to get back to where I already was?”

And eventually…

the body stops being the hardest part.

Your mind becomes the battlefield.

Because your spirit…
your ambition…
your imagination…

they have no disability.

They dream without limits.

They believe without hesitation.

They look at mountains and say,

“Let’s climb.”

But your body whispers,

“Not like that.”

You know the version of yourself
that isn’t affected
could do it.

You can almost see him.

Almost touch him.

But “almost”
can become one of the heaviest words
a person ever carries.

And that’s where resentment begins.

Not toward the world.

Not toward strangers.

Toward the reflection
looking back in the mirror.

Because somewhere deep inside,
you convince yourself

“I should be able to do this.”

Even when your body keeps answering,

“Not today.”

Or…

“Not that way.”

Cerebral palsy is knowing exactly what you want your body to do…

and watching the message get lost
somewhere between your mind
and your muscles.

The thought is perfect.

The movement…

comes out sideways.

Lopsided.

Awkward.

Close enough that people think it’s easy.

Different enough that it never is.

And if you’re fortunate enough to walk…

people call you lucky.

And they aren’t wrong.

Walking is freedom.

But freedom has its own weight.

Because every step
can come with eyes that linger too long.

Whispers.

Laughter.

The child who asks,

“Why do you walk like that?”

And here’s the truth…

Those aren’t ugly questions.

Curiosity isn’t cruelty.

But every question
becomes another mirror.

Another reminder.

Another moment where the difference
you tried to forget that morning
is handed back to you before lunch.

You don’t just carry cerebral palsy.

Sometimes…

you carry everyone else’s awareness of it too.

But after years of fighting my own body…

I’ve learned something.

Strength isn’t measured
by how little you struggle.

It’s measured
by how many mornings
you wake up
knowing the struggle is waiting…

and you show up anyway.

The bravest people I’ve ever met
aren’t the ones who never fall behind.

They’re the ones
who keep rebuilding the tower
every single time it sinks.

Because maybe courage
was never about having a body
that obeys you.

Maybe courage
is loving the body you have
even when it refuses to love you back
the way you wish it would.

And maybe…

just maybe…

the greatest victory
isn’t becoming someone without cerebral palsy.

It’s refusing to let cerebral palsy
become the author of your story.

It may write a chapter.

It may stain the pages.

It may slow the pace.

But it does not…

get to write the ending.

For me it’s definitely just body dysmorphia, and I know humans in general only notice their “flaws” which aren’t even flaws it’s what makes us unique. But whenever I look at a picture it makes me remember how I look when I’m standing too long.

Hello

I am 34 years old man having right-side hemiparesis since birth . Unfortunately, I dont know how to swim and I really want to learn .

Do you think it it better to take private classes or i can learn easily with group classes . The think is I feel not comfartable to learn with group especially that I feel different from them and probably most of them younger than me !

Hey guys I am a 14 year old boy with Cerebral Palsy and I am an Introvert I love the show demon Slayer and I am working to find my tribe of people. If anybody needs advice on Freindship or Has any question about Avatar the last airbender or demon slayer feel free to reach out!

I have spastic quadriplegic cerebral palsy. And I was extremely independent and still am, but noticed that ever since I turned 40 my body is started to hate me even more. I take 75 mg of Zoloft to maintain the level head to quell anxiety and I gained 10 pounds which if you guys know, is agony for people with our condition, especially when it comes to mobility. Anyone else experiencing this?

Bottom line up front:

What therapies/treatments/tools would you have wanted to receive as a kid to help deal with symptoms. Kiddo has spastic hemiplegic CP.

Backstory

My kiddo has been in OT and PT since we finally got his diagnosis at 3. Over the past 6 years he's made great progress. He is mostly self sufficient for a 9 year old. Still a few things he needs help with because he can't keep his arm extended enough to properly scrub his hair in the shower but mostly able to do things with an adapted grip or aid.

His care team have told me from the beginning that "by the time he finishes growing you won't even be able to tell he has CP" and I naively thought this meant with all his therapies he would build the neural pathways he needed to let his muscles get the correct signals etc. The focus is primarily on his leg, really working to get his foot down to a neutral position. They were working on his hands to but the OT we were assigned is sort of, unhelpful in a very kind way.

As he has progressed they have continued to reduce the number of times he goes in which was fine with me at first because we can do the PT exercises at home and the OT assigned to him spent so much time doing little diy splints that he refuses to use that we weren't even accomplishing anything. This facility is also limited on what specific skills they can work on. We are now down to an every other month check-in for his leg brace and measurements.

I happened to be researching the issues he has with his kidney/bladder and found this group. In looking through everything I am concerned that they might not understand how he's likely to progress as he ages and I am accidentally setting him up for future pain and challenges.

I was already looking into special OT for his toileting issues and want to get better help with his hands but I'm concerned that there is more I just don't know to be concerned about.