So recently one of my muscles in my leg started feeling like it had cramp and felt very tight. I’ve found that stretches and applying some heat to the muscle helps but is there anything else that could help, and why might it be happening? Thanks

Hi. My best friend is 25. He doesn't complain about pain much but, I can tell he is. He doesn't want to get hooked on anything. Do you have any recommendations. Thanks

Is it like hating yourself cause your disabled My boyfriend said I have this and I was wondering how to fix it

He said it cause

I get uncomfortable When people talk differently like when they sound different

Yes. I have Internalized ableism I do hate myself for years not

I have mild CP hemi. 6months ago I was diagnosed with neurogenic bladder ( chronic incomplete voiding ) .On the echo the urologist found 1 pseudodiverticuli along with thickened bladder walls and small bladder capacity (150ml capacity). On the lumbar MRi all was clear ... Could it be from the CP even if no other back issue was found on IMR? I currently self catheterize 3 time a day... and urine volume after I use the catheter is between 100 -110, 150 ml ... But I still can' t pee normally...

I am in a special education class at college( it’s to learn about special education to be clear) my professor gave us a documentary to watch called crip camp on Netflix it seems interesting if your interested go watch it

https://about.netflix.com/en/news/luccas-world-is-coming-to-netflix-or-watch-the-trailer-now

I got my baclofen pump in August and up to 107 mcg a day and 40 mg of baclofen orally for upper body spasticity management. I've noticed my core is weaker and I tend to significantly lean to the right while sitting or standing still. I've tried exercising to see if that was the issue or if it is medication with no change. Anyone else have this issue after the pump or can recommend a good core workout while seated? TIA

Apologies if this isn’t appropriate

My 3 year old hasn’t been diagnosed but we are going to see a doctor this week

Her skeletal age is 2, and the left leg is a few cm shorter than the right. We noticed recently that the left leg is weaker. Walking up the stairs she can’t put weight on it and lift herself up.

She can’t jump, and when she tries to the left just kind of hangs there

She can climb etc so it took us this long to notice

The other thing is she looks like a one year old. We just can’t get her to gain weight, her stools are always loose and she has a speech delay

We’ve been reading and she ticks boxes for CP. I was just wanting to see if anyone else experienced all this ?

We have been to doctors and tests all her life, and are still going but just wanted to reach out to the internet as well

Thank you

To begin with i must state, i am not looking for confirmation or diagnosis in any way, i would just really like to know if anyone has experienced something similar. Any medical info i provide is contextual and conjecture at this point.

Ok, so at this point in my disgnostic process CP is looking most likely, the variation would most likely be spastic hemiplegia. So my right hand side has always been tighter witht the right leg and hip being very contracted.

Only when looking more into it, did i read CP can have an effect on your visual field and this brought back a memory immediately. This is what id be interested to know if anyone else had experienced as it was quite odd. The following is taken directly from my notes:

 "I was stretching a year or more ago, when my vision sort of zoned out a tad, then i could almost see a blurry black bar on the far left of my vision. I guess my rational mind understood that a bar made no sense but i was seeing something.

After a bit of focusing and some blinks that dark area became filled in. I described it at the time like being in a smaller aspect ratio and then suddenly being able to see more. It was "as if 20% of my peripheral vision was missing and id suddenly gained it back". "

The experience was very odd as it went from effectively nothing, no visiual input to full clarity like it was always there in a matter of minutes. I assumed it was due to my horrible posture compressing nerves in my neck or something similar, but it was a truelly odd experience, that i didnt think id ever find anyone who might relate to it. I still dont want to admit/accept CP as a possibility let alone a likelihood, but i cant lie i am also semi excited that someone might understand that experience.

I hope this is in line with the rules, and would request any speculation be avoided to that end. Thankyou for takimg the time to read this.

Hi all. Just wondering if anyone has ideas on how to help release energy for toddlers who are unable to crawl, sit, Stand, walk, run?

It's clear my 1 year old has a ton of energy and all he is able to do is yell and kick. I imagine at this stage for able bodied kids they get the energy out by crawling and running around.

He has difficulty using his hands. So far it appears he has moderate spastic triplegia CP.

He is in PT and OT 3x a week, I'm trying to balance fun and therapy but most things we do seem like therapy when we aren't in therapy.

I'm just curious if anyone has any ideas. Thank you.

I have just finished the 3 Sharon M. Draper books, Out of My Mind, Out of My Heart, Out of My Dreams

what book should I try along the same lines?

I have mild CP and I’m visiting a friend in Chicago, the amount of walking I have done, while being more than the normal amount I do, should not have hurt my body as much it has lol. I think it’s time to buckle down and start exercising more seriously and stretching daily it’s hard to fit it in my schedule with two jobs and college full time but this was a big wake up call!

I have a mild form of Cp. Cp level 1 I think? I'm not too sure. I had sesuizes alot when I was younger and it's how the docter noticed it. It was apparently to mild to be documented, with sounds like bullshit and probably is but I'm not a docter.

Despite that iv realized it'd getting a tad bit worse. Docter diagnosed me with runners leg, but I'm nervouse it won't go away. I'm already been exsesvily winded after using the stairs normly and my fucked knees just make it worse. It's not a constant pain either. It's like a baby, you know there a baby sleeping in the next room but your still somewhat surprised when it cries. And when you try to find the baby to quite it down, it moves.

I'm okay woth the fact ill probably need an aid when I'm older. I'm not against that, it just scars me that my symptoms are changing from "Oh yeah I forgot I had that lol" to "Goddamit, pains back".

Dosnt really help that I haven't met anyone else with CP passing or not. Kinda need a elder.

I wear a hinged AFO on my left leg and every time I walk around campus it sounds like SpongeBob’s footsteps. How do I fix this annoying sound on an AFO?

I saw her TED Talk. You can still find it on YouTube. I know she's unfortunately passed away I've been trying to reach out to her practice for more information. Does anyone have any info?

Does anyone have any Yoga videos/ routines they watch for people with CP? I have spastic diplegia mainly effecting my left side. I am trying to find ways to decrease the constant stress of my life and think Yoga could be beneficial.

Hi all, I have moderate left hemi spastic cerebral palsy, although IMO it presents across my body to minor extents.

Secondly, obviously I have to say I realise I'm relatively lucky both with my baseline condition and my improvements in general but this year I've learned some really bizarre things I didn't think were possible and I'm very confused.

In particular, I've somewhat learned to voluntarily relax some of the muscles that developed fixed contractures even before my diagnosis at 3 months (I'm 30 now), such as my Achilles tendon.

I obviously still have fixed contractures and these muscles still prefer to clench but it's made such an insane difference to e.g. managing my walking and to doing manual stretches to manage the spasticity.

I attribute these discoveries mainly to the therapy I was given after tendon operations that severed nerves when I was a young teen.. I had to learn how to move muscles in my arm/hand essentially from scratch by massaging/manipulating them and memorising the sensations, it was a revelational experience.

It's been difficult and I've only had very niche successes on the whole but I've spent a lot of time in the 15+ years since trying to replicate that therapy with sensations outside of my day to day norm.

I have a lot of trouble with physios because they can show me what poses should look like but that doesn't help me much to isolate my muscles and understand which ones I am/ should be using (they do their best but it's hard) - so I'd really love to take this further one day with tech even if I'm the only one that it works for but I'd love to hear about other experiences people have had with improving their motor skills and how they managed to conceptualise it?

Hi guys I’m 28 M with cp that requires me to use a chair I’m just wondering how you guys have gotten on getting work? I’ve done work for my dad doing admin as well as helping my dad’s friend with admin I’ve been really struggling because my girlfriend is coming over in March and I feel like a bit of a loser not having a job Sorry I’ve rambled on a lot I know any advice would be appreciated thanks guys

I’m doing the best I can and it’s never enough.

I have 2 young kids (6&2). I’m a single mama. I work contract work at a clinic for children with autism and other diagnoses.

About once a WEEK I’m out sick. Migraine. Body pain. Exhaustion. Kids sick. And I’m so scared I’m going to be fired!

My boss hasn’t complained about it but I’m doing the best I can and feel like I can’t keep up with my able bodied peers. I just can’t.

I don’t know if I need advice or empathy but I’m just anxious and depressed that no one understands how damn hard it is.

I feel like I’m a failure.

Tell me I’ll be able walk again. Has anyone ever sprained their bad foot? Was it different afterwards especially if you have hemi?

I (19F, right hemi) decided that it would be good for me to move in with my mom to michigan to get better access to care & to take care of my mental health and hopefully get medicated.

Up until 5th grade i was getting treatment for my cerebral palsy on the regular, and used an AFO. since we moved (besides a tendon lengthening surgery when i was 13) I haven’t gone to a PT or anything, so I desperately need to see one.

The problem is I still live with my dad, and while he and my step mom acknowledge that I am disabled, they consider me able body enough to be normal. a frequent saying around the house is “you have a disability, but you aren’t disabled” whatever that means.😐 I’m his only daughter so i’m not sure how he’ll take it on top of how he sees my disability. Any tips would be appreciated, and i’ll probably post in the discord as well. Sorry if this looks weird, first time posting (i’m usually a lurker LOL) and on mobile.

Hello there ,

I have spastic CP and a quadriplegic, currently in nursing home due to loss of caregivers 3 years ago. I'm wondering if there are people like me who will or plan to live farther away from family in a different state? Please advise. Thank you

Hey,

it’s time for a big announcement!

We are happy to share that we have been reached out by members of Stanford University, that are conducting a research about the cerebral palsy community in order to better understand us and help help improve our quality of life. This research is completely anonymous. so you don’t have to share any personal information, but I’ve been told that it would be greatly appreciated. If any of you want to reach out and share your personal story with them. If you’d like to participate, all you have to do is fill out a simple Google forms. Which I will link below. We thank you all for your cooperation

https://tinyurl.com/StanfordCP

Who has experience with this process? Our son’s rehab doctor told us he would benefit from it. He’s almost 4, we’ve been doing Botox for a little over a year and we’ve been doing baclofen for about 2.5 years. He has spastic hemiplegia only affecting his right side and mainly his right leg. We don’t think we’re getting the results we were hoping to get from Botox, but we’ve been hopeful. I think we’re ready to try other treatments for his leg. Any input and feedback is highly appreciated. Thank you.

I'm in my 30s and I'm struggling being so young with spascity that caused my hip to disclose itself. I am extremely scared to go through this and I don't know what to do or expect.

I would really like to talk to someone about it but I don't know very many people with CP dealing with this.

I have a urosomy too and my doctor says that makes it risker?

I want to start by saying that I am not looking for medical advice. I have a doctors appointment soon. I am more interested in anyone who has had similar experiences that might help shed light on what's going on.

Some basic info for context: F 35, not in America, spastic bilateral CP. "Mild" - meaning I walk unaided, but with a noticeable "signature" to my gait. I don't experience a lot of pain on the daily ( I used to struggle with a lot of back pain and fatigue, but that went away when I started taking amitriptyline for my migraines)

Additional conditions that may or may not affect things: Diabetes type 2 (well managed), migraines, pmdd, ADHD, recently discovered vitamin D and B12 deficiency.

The incident that brought me here: I was standing in my living room, suddenly my left hip just stopped supporting my weight, and buckled. No pain at this point. I trip and fall regularly, so by reflex I'm usually able to ragdoll/slow my fall, and prevent injuries.

I'm on the floor, and realise I can't really move that leg. I still don't feel any pain. I call my friend a few doors down, to come over and help me up and figure out what I need. While waiting my left hand starts trembling. My friend helps me turn over. After a few more minutes spasms gradually start in all of my limbs. It hurts. There is also a pain radiating from my hip all the way down my leg. I have never experienced anything of this magnitude. I can have leg spasms if my calves are particularly tight, but not often or severe.

We call an ambulance, I get muscle relaxants, they confirm I have no severe fractures and I am given pain meds.

X-ray is normal, ortho can't find anything other than an overall weakness due to all my muscles being exhausted xD The pain returns once the meds wear off, but nowhere near as bad.

they keep me overnight and I am discharged with no answer to what happened or why it did.

My hips have given out twice before in my life with about 10 years in between, but it has never come with pain or any spasms. The first time (I was 15) I didn't tell anyone and regained full function within 30 minutes. The second time, I landed badly enough to anger an already existing inflammation in my other leg, so not really a comparable experience. No other issues were found, normal x-ray.

I'm a pretty rational person, I'm not one to get anxious about my health. I've been through quite a bit, so I'm not easily rattled. This. Scares. Me. Not so much in the moment, but looking back.

What if it happens again? Without warning, and in a less optimal location? I can't prevent it, because I have no idea what is going on.

I still get radiating pain down my leg, mostly when at rest, sitting/lying down.

I have tried googling, but I can't seem to find anything that seems to fit what is going on with me. I was hoping if anyone else has experienced something similar, it might give me some direction of what to look into whilst I wait to see my doc.

I recently started my real first job post college in the business world I have mild to moderate CP which affects my walking and speech. I go to the gym,ski drive do everything. I have been the only single person in my friend groups for a while.Had a handful of dates nothing has came out of them. I understand that dating will be more difficult with CP but is there any advice anyone who has to help me find girls that would be willing to get to know me and give me a chance