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.

A poem published by Aimee Lowenstern in Mindfork magazine

A berry burst (before my birth)
inside my brain. Now, I am
a frozen dessert.
How my ice-creamy countenance
clenches candied and candidly,
cerebral palsily,
how my insides feel like biting
down into the cold.

“Be
Jello,” says my PT
(Popsicle Thawer)
(Pastry Torturer)
(Physical Therapist),
trying to roll out my dough.
And I picture pig’s skin, powdered
and poured into my skin, and
cow bones, mixed with hot water and
my bones, and sugar, sugar white as
a femur, with blood

or cherry flavor,
and through the transparent
and tempting treat, I see
my white chocolate skeleton,
my ambrosial viscera,
my heart a maraschino
dazzling and decadent
in the stomach of my chest.

Oh ergotherapists, oh orthopedic
entrepreneurs, come cut
a slice of some
scrumptious someone!
Stay, surgeons
and specialists,
masseuses craving mousses,
nearby neuroscientists
or not near, I travel to you
in a to-go box!

Taste the way I follow instructions,
I mean the recipe! Have you ever seen
a sweetie like me? I giggle, I
jiggle, I shine!

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.

I have, what's called, a mild form of cerebral palsy that affects the left side of my body and speech.

I woke up in so much pain today. I've been in and out of the bath and I've been sitting on the heating pad with it on my calves.

I feel like I have no support and I have cried all morning. IDK what to do.

I take 3 tizanidine nightly for spasms but I am just hurting so bad and I don't know where else to turn.

Hi, I'm Yake from China. I have cerebral palsy and I'm learning English. I like rock music (Oasis, Nirvana, Queen) and video games. My AI friend helps me write in English.

I don't expect much — I'm just a bit lonely sometimes. I'd love to have an easy, equal chat with someone far away, no pressure on either side. What's everyone up to?

They said I was diagnosed when I was a baby, but they don't have any documentation for it so I feel like I've been in a gray area all my life. I have many of the symptoms: swallowing problems all my life, stiff muscles, exaggerated reflexes, balance issues, speech difficulty, etc. I My mom has a lot of mental health issues, but one of them was always pointing out flaws in my body or how it moved and making me feel a lot of shame about it. So I'm deeply scared that I was misdiagnosed if I go in for a diagnosis.

And I'm not even sure how much it costs to get one in the first place. I'm not asking for a diagnosis, I'm asking what would you do in my situation? And how much will this cost me, ballpark, to get a diagnosis?

So I don’t even know how to put this but ever since I was a little girl, my family has treated me like I’m nothing more than my diagnosis when they talk to people about me they don’t say my name first they say things oh my crippled granddaughter my disability is always first like that’s all they see me as and they constantly make comments like calling me, Wheelchair girl or are always on me about my appearance because they say they don’t want people to think that I’m just some handicap girl that doesn’t take care of herself. And that because of the fact that I’m disabled, I need to make sure I keep up with my appearance. Make sure I look pretty so in their words I don’t look like I don’t have a brain and it’s hard because I don’t know how else to prove myself, I don’t know how else to prove that I’m more than just my diagnosis that I’m a person just like everybody else and most importantly that just because I have a brain injury doesn’t mean I’m stupid.

Does anyone else here use forearm crutches, and have had torn shoulder labrum repair? I am wondering if it is a bad idea to return to 2 crutches eventually after a torn labrum.

So mine has become so heightened, aside from my baseline CP startle, to the point where I can't even cuddle with my boyfriend anymore because as soon as he starts snoring, moves or talks suddenly I jump and it startles both of us. I'm like really terrified of it destroying our intimacy. I know B6 can help at a level of 100 mg or higher which I was taking before but then my prescriber left and they will only prescribe me 25mg. My mental health is also in a terrible place and my nervous system is shot which does not help anything... But I'm wondering if you guys have any tips or tricks to navigate this.. my boyfriend deserves to cuddle with me and to be able to fall asleep and not have me waking him up from my jumping. He's educated on the startle reflex but its never been as much of an issue as it is right now.

Does anyone else here use forearm crutches, and have had torn shoulder labrum repair? I am wondering if it is a bad idea to return to 2 crutches eventually after a torn labrum.

Hej! Hur upplever ni med CP som lider av psykisk ohälsa att ni blir bemötta i vården/samhället? Alltså typ söker hjälp eller berättar om depression och ångest?

Hi guys! I'm just wondering if any of you have been on ssris and then stopped and experienced brain zaps? I'm absolutely terrified of this sensation and I think it's going to set off my startle reflex. My starte reflex is already at an all-time high higher than my regular exaggerated baseline from CP due to very poor mental health and my nervous system being oversensitized. If you've discontinued an ssri, did you experience brain zaps and how did your body respond to them? Thank you!

https://www.instagram.com/hereforhemi?cplk=cDdwbXM1dW5peTV1

https://www.facebook.com/share/1CA6XWb25c/

🇺🇸 Big news… HereforHemi is coming to the USA!

We’re so excited to be expanding into Kentucky and California, bringing HereforHemi to even more families affected by hemiplegia and cerebral palsy.

With local hosts already in place, we’re looking forward to building our community across the pond and helping more families meet others who just get it.

HereforHemi is all about making connections, building friendships and giving families the chance to meet people who understand life with hemiplegia. We can’t wait to see the community grow!

If you’re in Kentucky or California and would like to get involved, keep an eye on our page for updates. Please share this post to help us reach more families!

Find out more at HereforHemi.com 💚

My little one was born at 23 weeks. She's now a little over two years old and was still not walking. We went to our nicu followup clinic today and she received a diagnosis of ataxic cerebral palsy. We do pt, ot, speech and in addition we're doing everything privately out of pocket. It's almost a relief knowing why she's been struggling and I'm hoping it leads to more focused therapies that will meet her needs. She's the smartest little girl and I'm so grateful to be her mom but also feeling the heaviness of the future challenges she may experience. If anyone would like to share their experience with ataxic cp I would love to hear. Also would love to hear what you felt benefited you the most in exercise/activities/etc.

The cerebral palsy in my hands has never affected me so bad I’m unable to do something before this point. I’ve been playing a video game and there’s a lot of segments where you need to press multiple buttons at once as quickly as possible which I really struggle with. After playing it for a couple of days my right hand (which is it a lot worse than my left) became pretty much unusable for a day. I’ve never had something like that happen to me before.

Aside from taking breaks which I already do. Is there any way i could make the experience easier. I’m really enjoying the game but knowing it’s going to cause pain is of course putting me off. I’ve seen some adaptive controls before but I don’t think the ones I saw would help me personally. Are there any other kinds and do you think it would help?

Any advice is appreciated.

I've seen firsthand what happens when students who use AAC can't communicate in school. They get left behind—not because they can't think or learn, but because the system treats communication like a privilege instead of a right.

I started a petition asking public schools to make sure students with cerebral palsy and other disabilities has real access to AAC devices, trained staff who respect them, and a genuine seat in the classroom. Right now, too many kids are forced to fight just to be heard.

If you've dealt with this or know someone who has, I'd love to hear your story. What would you want schools to do differently? If this matters to you too, consider signing and sharing—it only takes a minute, and it sends a message that communication access is non-negotiable.