Hi guys, it's the first time I'm posting on this sub. English is not my first language, so bear with me. I would like some advice because I've never met anyone with the same condition. I've had spastic hemiplegia(right) ever since I was born. It's not so serious that I have trouble living life on my own, but it does prevent me from achieving proficiency in anything that requires normal physical capabilities,

When I take an interest in something, I want to do it well, but I can't due to my CP. I wanted to play the guitar, or play soccer but I can't when the right side of my body is incapable of moving properly and is frail. I often ended up stopping midway because my CP startd to get in the way. As I got older, I've come to hate engaging in anything physical because it reminds me of my disability. I hate having to explain to people why my hand or my leg is kinda stiff.

Most importantly, it ingrained an expectation of failure within me. I feel that whenever I do something physical, I'm gonna screw up because I have 20yrs experience of failure under my belt. It has affected my mindset and outlook on life. I always think to myself what could have been if I didn't have CP. I now subconsciously believe that I will fail at things that aren't physical at all. I recently failed to get into graduate school even though I studied hard for two years. I didn't even cry because I realized a part of me was expecting failure. My mind prepared me in advance so I wouldn't just break down. That's how accustomed to failure I've become.

I was always ambitious, with clear life goals. I wanted live life to the fullest and experience the world. But I keep running into a brick wall even though I work rly hard. I just feel like no matter what I do, I can't escape failure. I know I can't blame my disability for everything, and I have made many mistakes in my life. But how do I stop letting this expectation of failure affect me?

For any parents of teens with CP there is an amazing group in the UK called CP sport who hold activities for young people with CP.

CALLING FOR A PARTICIPANT

Good day, everyone! ^^

We are Psychology students from Iloilo city and we are currently looking for a child diagnosed with Cerebral Palsy (CP) here in Iloilo City and their parents who may be willing to participate in our case study, which involves an interview and a documentary. This will be a requirement for our course subject Cognitive Psychology.

Participation is entirely voluntary. We assure you that the child’s privacy, dignity, and confidentiality will be respected throughout the process. Informed consent from the parent or legal guardian will be obtained before conducting the interview and creating the documentary.

If you are a parent or guardian of a child diagnosed with Cerebral Palsy, or know someone who may be willing to participate, we would sincerely appreciate your help and support.

For inquiries and further information, please feel free to send us a private message.

Thank you so much for your time, kindness, and support!

Cross posted

Hello, I'm 20 weeks pregnant and planning a scheduled c-section (I want a tubal ligation, hence why I am opting for a c-section) Moms with a CP diagnosis, how did you find the recovery from your c-section? Tell me everything, if comfortable:)

Hey everyone!

I'm from Odisha, India, and I'm looking to make friends with people from Odisha who have cerebral palsy (CP).

A little about my interests: I enjoy watching anime, J-dramas, and web series. I'd love to meet people with similar interests, chat about our favourite shows, share recommendations, and build genuine friendships.

A few things I'm looking for:

-18M

- People from anywhere in Odisha.

-Friends who have cerebral palsy (CP).

-People who enjoy anime, J-dramas, or web series.

Please have Discord, as I'd prefer to chat there.

You don't have to share all my interests. I'm happy to get to know you and learn about yours, too

I'm already in the cp discord server!!

I’m Matthew, 33, and I use a power wheelchair. I like exploring technology that could give people more choices about how they do everyday things.

I recently tried something on my M4 Mac mini that impressed me: Head Pointer. Using my Logitech C922e webcam, I moved my head left and the pointer went left. I moved right and it followed.

I also found facial-expression settings, including opening my mouth, smiling, and raising my eyebrows. I explored them, but I didn’t finish setting up and testing every action. I turned Head Pointer off afterward because I was experimenting.

**Where to find it**

On Macs with these options, open **Apple menu → System Settings → Accessibility → Pointer Control** and look for Head Pointer. Its information button opens configuration options.

For someone with CP, I think the important part is finding a comfortable setup. Our head control, facial movements, spasticity, and fatigue can be very different.

My practical suggestions:

- Keep your usual controls available during setup.

- Position the webcam around your comfortable posture.

- Start with short sessions.

- Try one setting or expression at a time.

- Stop and adjust if you’re straining or getting tired.

- Don’t assume somebody else’s settings will suit your movements.

There is also a separate option called Dwell, which performs an action after the pointer stays on a target for a chosen time. It may be another option to explore if expressions are difficult.

I’m sharing an initial discovery, not claiming this replaces anyone’s existing equipment. I was pleased that I could try head-controlled movement using the webcam I already owned.

Apple’s guide:

https://support.apple.com/guide/mac-help/mchlb2d4782b/mac

Have you tried this with CP? I’d especially like to hear how people manage involuntary movement and fatigue when using alternative computer controls.

I keep thinking I need to talk to the doc about my arm.

My Left arm has always done it own thing.

I lately it has been having more and newer problems.

Sometimes I have feeling but can not move it, and sometimes no feeling or control over my arm, until I move my head and back even a little, then it comes back to normal.

No feeling in you arm is really odd.

My doctors say it’s normal to have an increase in spasticity when in distress, and I do, but I also tend to have an increase in spasticity when I’m really happy. Does anyone else experience this?

I'm a full-time wheelchair user (cerebral palsy) from Brisbane. I started making my own gear after getting fed up with how much disability suppliers charge for simple things.

This one's my R-Net CJSM2 Sunshade (for Magic, Permobil and Quickie Chairs) ($35.00 AUD). Struggling to see your controls in the sun? I’ve been there too-so I designed a simple, lightweight sunshade just for Magic Mobility chairs. It slips on easily, stays put, and fits right in your bag when you’re done. No hassle, no tools, no stress. Whether you’re out for a cruise or waiting for a ri

Honest opinions welcome - good, bad, or "nobody needs this". And if there's something you wish someone made, tell me.

If you want to look closer (not trying to hard-sell): https://wheeliemods.com.au/products/magic-v6-sunshade

(Mods, please remove if this breaks the rules - I tried to check first.)

I 22(F) had my pump put in a little more than two years ago at 19. Before my pump I was always freezing. Now I feel like I’m in a sauna constantly. I’m fairly certain that the pump triggered this because I had no other medical changes around the time this started. I’m just tired of boiling alive.

34f spastic diplegia.

So I’ve tripped and fallen 6 times in 11 days 😕. This is not my norm. Already had my self hatred pity party. Still randomly feel teary about it.

My Saturday fall I was carrying an empty soda can and landed on it in the center of my palmas it got bent by my landing 😖. It feels just like a bad bruise to that hand/thumb part of my palm and still hurts but not as bad as day-of.

Anywho, I’m going on a big vacation next year and figure wrist guards may be best as there will be uneven sidewalks and A LOT of walking. Are there any wrist guards out there that might be a good idea? All I’m finding are the bulky skater ones.

I have quadriplegic cerebral palsy and was diagnosed with neurogenic bladder approximately 10–12 years ago. At the time, my urologist recommended a suprapubic catheter. I put it off for years, mostly because I was worried about the risk of infection.

I finally had it placed on August 31, 2026, and overall, I’m glad I did. I wanted to share my experience for anyone in a similar situation who might be considering one with their urologist.

There have been a few issues along the way, but nothing major or outside what I was warned to expect. So far, I haven’t had a symptomatic infection or a significant fever. Bacteria have been present, but I haven’t developed an infection. That’s just my experience so far, not a prediction of anyone else’s infection risk.

I go to my urologist’s office for catheter changes every four weeks and see my urologist every six months. We’ve also been doing bladder ultrasounds every year or two, although I don’t know whether that schedule will change now that I have the catheter.

The biggest improvement has been the freedom. I can wake up when I feel ready without immediately worrying about having to urinate or having an accident before I reach the bathroom.

Going out in public has become easier, too. I can stay out longer without worrying about putting a urinal between my legs or needing a pad or diaper to manage bladder accidents.

For me, this has been one of the best decisions I could have made for my quality of life. I’m still early in the experience, and everyone’s situation is different, but I honestly wish I’d done it sooner.

I’m sharing what has worked for me, rather than saying everyone with neurogenic bladder should get one. If you’re weighing this option, I hope hearing a positive experience gives you something useful to discuss with your urologist.

For others with CP and a suprapubic catheter, how has your experience been over the longer term?

Our 9MO daughter has CP and so on August 10 we registered her in Duke's database and sent an email to the Duke Pediatric Brain Injury Cell Therapy Team. They replied the next day saying that she had been successfully registered in the database and asked if we would like her to be screened for an unrelated donor cord blood infusion. We replied and said yes. That was on August 11 and we haven't heard anything since. I know that the wait can be long, and so I'm just wondering if any of you have gone through the stem cell process with Duke and know what stage of the process we are on. I would have expected that we would be screened relatively quickly and then we would be put on some kind of waitlist until there was a donor match and that would be the bulk of the time.

TLDR; It's been 2.5 months since we applied, what is a reasonable wait time for the screening process?

Hi all, I was hoping I could get some help! I was reading a post Deon Kenzie sub 3 marathon and it really started getting me to want to get designated as a T-38 athlete. I just ran a 3:13.42 marathon and would like to get into some bigger marathons. I’m struggling to get in touch with the people at US Paralympic. Didn’t know if anyone has any experience with this

My baby is 7mo and was just officially diagnosed with cp. His head is really small and has been since 1mo old. He’s in the less than 1 percentile.

Is this a common occurrence amongst people with cp? Does it have any effect on his ability to learn? Will it ever grow to a bigger size?

Just looking for any advice or answers from anyone who may have gone through the same thing.

Just venting here, but I used to get all sorts of help (free help!) when I was a child, but now that I’m an adult, there’s no one. All the cerebral palsy specialists focus on children, it’s like they don’t even realize that we grow up and stay disabled. I’m getting surgery soon, and it took me six months to find someone who was willing to work on me, and they say they’re going to have a pediatric surgeon in the room just because they’re the only one for miles who knows about bodies like mine. So demoralizing.

Has anyone else with spastic cp had their kneecap dislocated because of their spasms?

Does anyone else have right medial knee pain if you’ve done excessive walking that day? Sometimes I don’t even have to do much walking for it to make an appearance. I’ve had it for years and neither PTs nor MDs can pinpoint what it actually is.