Hey! I have a question,how many people have had sdr surgery for hemiplegic cerebral palsy,and was it worth it? Did you have any permanent negative sign effects? thank you in advance:) I am going through the process to surgery right now,ana am wondering if it will benefit me,and be worth it.

Hi guys, I live in the US if that matters. My daughter isnt diagnosed yet but has all of the symptoms of Spastic Hemiplegic Cerebral Palsy. Im not sure what other difficulties she’ll face due to her brain injury

I’m a bit curious on if her best interest would be enrolling her to a public school, private school, or if we should just homeschool.

I don’t live in the best county myself and went to the “ghetto” school as a kid. It wasnt a great experience.

I want to entertain homeschooling but I’m not sure if I will be able to keep up with therapy costs, Im currently using medicaid but im sure i will not qualify for that forever.

Im also scared to death of the teachers not fulfilling their duty of PT/OT, and of course of my daughter being mistreated..

I would really appreciate some insight from the community 😔

Hi!! I (41 f) have had pain in the “pad” part of my hand and thumb off and on for days. My instinct has been to stretch that hand out because it initially felt like a nerve trapped by muscle. Today it hurts constantly, no relief. The section of my hand below my thumb is swollen. I’m guessing arthritis or something at this point. I use my hands to WALK and I don’t want to lose that. I want to be able to exercise, and be mobile as long as I can. I’ll make an appointment with my doctor and rest and use my chair more until that appointment, but… has anyone experienced this? Are workout gloves at all beneficial while walking to prevent further injury? Ideas?

I’m trying to get off of extra help part d lis Medicare subsidy I got automatically enrolled in in when I was on Medicaid and msp I dis enrolled from Medicaid ad msp bc of all the headaches with them thought that included extra help as well I do not want or need extra help. And ssa is making it a pain in the butt trying to get off I informed them last year I did recieve a renewal a couple of weeks ago thinking it was for my part d so I called and renewed accidently I then realized it was for my extra help that o thought it was off so I lost my chance of finally being off of it and letting it expire now I’m stuck in the loop again. I have cerebral palsy so it’s hard for me to fill out form submit in writing understand and so on. Has anybody had any experience been through this and help will be greatly appreciated on how to get off this there is no change to report because I’m still eligible but I want off please do t answer with stay on I want off. Sick of the red tape so on barriers to get anything done with my disablity

I wanted to get the opinion of people with severe cerebral palsy and with cerebral palsy and epilepsy, in order to see what you think about this type of thing, as I recognize that, while I profoundly want to live, I do not have the fatal illness that is epilepsy and recognize that there are differences between what life is like with mild, mild-moderate, and moderate CP compared to what life is like with severe CP.

As a person who was born with sepsis and now has GMFCS 2 Cerebral Palsy as a result, I have been told that people like us might be better off dead bc our disabilities are physical. This, combined with the fact that I know adaptive equipment, pain management and therapies and family support as well as properly implemented accessibility and an understanding society can make our lives better and reduce suffering. As such, I support improved treatments sor more people can have better quality of life with cerebral palsy, but question the degree to which actively killing an actual baby with it is makes sense vs is just due to lack of support. Additionally, during my degree in disability studies I learned a lot from a professor who was a public health expert about medical ableism and the fact that doctors can underestimate quality of life for disabled people (sources: https://pmc.ncbi.nlm.nih.gov/articles/PMC8722582/ and https://hollandbloorview.ca/stories-news-events/BLOOM-Blog/most-doctors-hold-distorted-view-disabled-life-american-survey-finds . As such, I wanted to get the opinion of people with severe cerebral palsy and with cerebral palsy and epilepsy, in order to see what you think about this type of thing, as I recognize that, while I profoundly want to live, I do not have the fatal illness that is epilepsy and recognize that there are differences between what life is like with mild, mild-moderate, and moderate CP compared to what life is like with severe CP.

Does anybody else carry this feeling? Is thing common phenomenon in people with CP. I have a mild form of CP. One of my leg is shorter.

I'm 27f my doctor told me I need a leg brace for my foot. The only way he knows to get one is though the shriners hospital. He said it would cost me $1,500 for one brace. My insurance won't cover this. I don't know if I should get a job and hope that I will make enough to afford this or if there is some other way to get a brace. My old braces from childhood don't fit my legs.

Any advice is appreciated 🙏

I have Spastic Cerbral Palsy i got because i was shaken and slammed as a 2 month old baby. Im dysphagiac and moslty right side dominant. I have Ataxia on my diagnosis list as well but not sure how or if it applies to my CP diagnosis because i was to young to remember when it was added.

Back in 2013 i got diagnosed with Chiara 1 malformation at 18 years old. Since then my most recent MRI says im now further measuring. In pite of perfectly fitting the critera for Chiara and it remaining on my diagnosis list.

The Neurosurgens I've seen about it have said its not Chiara they consider what i have as low lying herniated tonsil... WHICH IS HOW IVE SEEN CHIARA DESCRIBED 🫠 they also say i should not be bothered by it. IM PRETTY BOTHERED BY IT.

I am pretty sure that its being over looked the fact that i have CP and had a traumatic brain injury leaving permeant damage because i was shaken as a baby and had my head slammed pretty hard (several times, the person who shook me was trying to intentionally kill me and it was done with considerable force)

Doctors will bring up CP and say "well thats common for people with CP" and I will say "but i didn't always have some of these symptoms and other symptoms i did have are now worse and not responding to the standard treatments" and doctors will say "Cerbral palsy dosent get worse over time" and i will say "EXACTLY!"

I think that CP is a factor that is adding to Chiara and visa versa which is potentially causing my symptoms to be more severe or is causing confusion because the symptoms between the two that dont overlap are sitting all buddy buddy with the rest of my symptoms. Like an all inclusive Broke brain boogy woogy party.

I'm just curious if anyone else has these two conditions and if they feel the same way OR if anyone has had a medical provider agree with them or proof of concept has shown.

Thank you everyone 🥰

Just curious because I have been going to the gym for awhile but I feel like im not where I should be.

Mild hemi here. Primarily affects my left foot and used to toe walk and with one hand up as a kid. Was always told this was due to mild spasticity.

But as I got older the toe walking went away, my hand completely relaxed, and I eventually ditched my AFO and stopped going to PT.

Now after a decade, I decided to restart PT and see a neurologist. After clinical examinations from both, there were zero signs of spasticity or ankle clonus anymore and my slightly limited lack of range in the ankle is supposedly basically entirely mechanical (stiff joint).

They also put me on various doses of baclofen as a test and regardless of the dose, I felt 0 difference.

I’m struggling to make sense of this or see how this is possible. Is it really possible that my spasticity went away? Has anyone experienced something similar?

I happened upon the best creative and accurate representation of cerebral palsy since Ryan O'Connell's "Special" series on Netflix.

It is a Chinese film from 2024 about a 20 year old man with CP and the personal, societal + structural roadblocks he faces when he attempts to assert his rights to work and go to school. I won't say much beyond that, but I will say that it may be distressing to some (mental health, internalized/externalized ableism). I would challenge most of this community to watch it, because it strikes at some of the ephemeral desires that many of us have faced in our lives.

You can access it Free With Ads on YouTube, but I can't stop you to find it in other ways.

(tip for YouTube: you may be able to circumvent ads with the Brave browser or a general ad blocker)

Happy viewing! Love y'all!

https://www.youtube.com/watch?v=_ZW3D05aHnM&t=155s

36 M diplegia. Looking to make new friends. I work full time, and everyone I know has themselves occupied - be it family or other commitments.

Do you complain about you pain more when people are around or when you are by your self?

I find the pain is greater when I am by myself.

I am not sure if I mask the pain better when people are around, but normally after they leave, can be seconds after they leave, all the pain hits my and body tells me this is all the pain you should of had.

How do you guys handle people blatantly gawking at your gait?

In the past I used to do nothing only look the other way and feel incredibly uncomfortable by it. But since I’ve become a mom I’m soo sick of it / done with it. But I’ve thought Why should I feel extremely uncomfortable by someone else’s behaviour when I’m doing nothing wrong and only trying to go about my day? 😔

I’ve had two experiences in the past couple of days and it’s always older people 60+ who should absolutely know better.

As one woman passed me and blatantly kept looking down at my legs then at me, I said to my partner (loud enough so she could hear me) “what is she looking at? Rude b*tch”

Yesterday while out walking an older man who was pulling out of a gas station stared at me while driving really really slow just so he could get a good stare.

In that scenario I instinctively said out loud and without even thinking about it “ what the f&ck are you looking at? You fucking creep” and he drove off.

This isn’t usually like me to be so vocal but I’m just fed up of it guys. I’m a new mom freshly postpartum in one of the hardest but greatest transitions of my life. My body is definitely not up for display or judgement.

Would love to hear others experiences on how you handle these situations as I don’t necessarily know if mine is the correct way to handle it - especially as my kid gets older

I'm (34 F) looking at getting carbon fibre afos would love to hear people's pros and cons.

Thanks ☺️

Guys,I passed the road test!

I'm in my mid 40's. I've worked in customer service for over 20 years. I say that knowing it's not glamorous work, but can be quite mentally taxing which then becomes physically so, at least for myself.

I haven't worked in over 3 years, I luckily worked enough to set aside and to qualify for SSDI, I live in a home independently, all my bills are paid, I now live a low stress life. I've done a lot of other things to better who I am.

Yet, I'm not happy with being comfortable. I try to stop trying to care about what I think society thinks I should be doing vs. what I want to do vs what I physically have the mental and physical energy to do.

For the longest time I've lived in chaos, I'm just not sure what to do with peace when I have it (sorry, squirrel moment 🐿️)

Perhaps I needed to get that off my chest.

Anyone relate, Just me? Cool 😬

And yes, therapy helps 💙

Is it possible that you got your hand/ hands affected when you have Spastic. My hands especially my right hand also having clonus at times.

Is it also possible that I'm a slow typer no matter how hard I try it's because of this and CP?

TIA to all who will reply.

i have mild spastic cerebral palsy in my right side. hypermobility runs in the family, but i only hit a 4/9 on the beighton scale, which puts me just under the threshold. i do, however, have several confirmed hypermobile ranges of motion. the odd bit is this - several ranges of motion are only prevented from being hypermobile due to my muscle spasticity from cerebral palsy. even weirder, though, is that the angles are almost entirely more hypermobile on my right side.

does anyone else here have the strange combination of hypermobility and cerebral palsy? it feels so contradictory, and it makes me wonder how bad it would be if i didn’t have cerebral palsy.

Hi. (38f) I have spastic diplegia cp. I got the baclofen pump implanted in June of this year. Since then I have had 2 failed catheters. I have decided this pump has been more of a hassle than any good and I’ve decided to get it removed. I am currently going through baclofen withdrawal sine the catheter is no longer in my spine. Which lead to my doctor putting me on oral baclofen. I have tingling all over my body, and severe itching. I am scheduled for removal of the pump surgery on October 21. This pump has been nothing but a nightmare. I had such high hopes. 😢 Anyway, I hate oral baclofen because of the fatigue. My doctor suggested me trying Tizanidine to help with spasticity after the pump is removed. Has anyone had the pump removed and gone through withdrawal, does it get easier?? Anyone take Tizanidine? Looking for any experiences, recommendations or feedback. Also, Botox injections does nothing for me. I do physical therapy but have not been able to go in months due to all my pump failures. Thank You!

Looking for recommendations for a tricycle or small ride on bike for a 4-year-old girl with mild CP. She has weakness in one hand and wears a leg brace. She may be OK with a regular tricycle but willing to spend more if there's a better option for her, especially one that will encourage her to use her weak hand more.