We’re conducting a research study about how caregiving responsibilities can affect everyday activities, routines, and participation.

If you’re a parent or legal guardian caring for a medically complex child under 18, you may be eligible to participate.

Interested in learning more? Check out the flyer below for details about eligibility and how to participate.

Your experience matters, and we’d love to hear your perspective!

https://redcap.link/4fqqz141

I don't know when we became friends; he just kinda spawned in.
(lets call him Jordan)

Only in recent years have I looked back and into the struggles people like him and anyone with CP has.

And it's shocked me to find out and also made me understand why my friend and I are so close.

Lack of pity.

Because he kinda just spawned in, I never really treated him any differently, which frequently almost everyone else did (which, me being a dumbass, didn't understand was due to his disability)

I've also noticed he never got 'bullied' in the sense of people making fun of him; there were a few occasions, ofc, but he sorted them out.

I just noticed people gave pity points whenever they realised, or at any event when something physical was going on, and I could tell this frustrated him. We spoke about it a few times and brought up a story about how he and I were play-fighting, and people stepped in saying, "You can't do that; he's disabled". I, of course, carried on because it's Jordan; the logic wasn't deeper than that. I didn't argue with them about the reasoning; I was just totally confused as to why I wouldn't want to wrestle him.

I just thought people were zoning in on him for no reason.
(With, of course, a few obvious scenarios)

But maybe it's because I grew up with him, idk.

I never knew how much he valued this type of relationship until the recent talks in the past year or two; he often credits this treatment to how close we are/were (Don't talk too much now, but he's busy.)

After Mitte passed away, may he rest in peace.

My love for the actor and my shock of his passing kinda made me realise that I've never done anything for CP, which makes me kinda feel like it's been a one-sided friendship on his part; he's always been there for me/been my fucking rock, and I don't know if I've done anything for him beyond just being a mate.
(But maybe that's all I have to be?)

Like, I feel like I should do something, but I don't know where to start. I also don't know if I should. Because why bring it up now? We are both at the start of our 20's and I don't know if he'd actually appreciate it.

Recently, he had a family member pass away, and he's now in a different city.

I want to show my support, but I can't think of anything other than the occasional message or call.

I want him to know I have his back, but I don't know if doing something for CP charity would be an insult to our dynamic, I just want to show him I care in a meaningful way.

And I just don't feel like a text message or phone call is good enough given our history.

Maybe doing a charity thing "For him" is quite performative, I'm unsure about my own intentions.

I just don't know how to support him in this rough patch, especially from a distance, as whenever we've been through things before a lot of the time its been together.

He's quite literally the brother I chose, and I'm fucking lost in the sauce.

Help?

(Note: I’ve never looked into this community before, so I apologise for my ignorance!)

Context bub is 8months old severe issues starting from pregnancy had high risk placenta previa born month early unresponsive event at 9 weeks old .
She’s had Severe feeding issues ,reflux ,clenched hands , super unhappy baby, stiff when getting changed or trying to put arms into clothing she tense up she also had clonus as a newborn up till 2months old very uncoordinated in hand preferred to roll right side clenched hands still now hitch crawling with the left side being the issue . She had her HINE assessment a month ago scored 63 but it says in the report brisk reflexes and spread can see that something is clearly not right given her history also says that she doesn’t need MRI but I’m thinking I need this MRI my gut is telling me something isn’t right she’s also my 4th none of kids did any of this . Does this sound like something isn’t right like they are missing the bigger picture ? I know mild CP can be very difficult to diagnose but any advice ?

Putting together a deck for my son’s teachers to better understand his abilities, limitations, how he communicates, etc…He’s in 2nd grade genEd inclusion, left hemi, and has some struggles communicating and regulating. We’re also having issues with appropriate discipline from teachers, so I think it’s best to have a clear picture of his skills. Parent conference is scheduled with his team to go over everything.

I’ve spoken with him, but he’s 8 with the attention span of a goldfish sometimes (as most 8 yr olds do), and he just states his favorite foods and colors 😂

I’m trying to curate more “I” statements like “I feel ____ when I have to…” etc…

So coming to you all for things you wish your teachers had known about you or CP in general!

Has any hemi’s managed to successfully reduce the asymmetry in their body? Starting with the shoulder and upper leg/hip

I feel like the asymmetry is half the battle.

Does physio help when your little to correct this

Tengo una andadera posterior modificada por mi mismo, con ayuda de amigos y familiares. Pero veo que hay muchos nuevos equipos de movilidad que me permitirán usar los brazos (arms free) y también me llama la atención, para el futuro, los exo esqueletos. Que experiencia tienen aquí al respecto? Alguien a usado. Zeen mobility device? Andaderas con y sin soporte?

I (41 f) am really in my feels today about my body. I’m 4’9” and weigh 131 at the moment- not terrible, but at a tipping point. I’m mostly vegetarian, and I do try to be aware of what I eat without becoming obsessive- I’ve had struggles with hyper fixation on food in the past, so I’m trying to relax, give my body what it needs while also just enjoying the experience of eating instead of worrying. I love food!

I am perimenopausal and before fall hit I was really into walking on my crutches, tackling hills for some good resistance and strength. I’ve been in and out of physical therapy (which is nothing like working out for me). I’ve recently been in pain from overuse of my dominant hand, so I’ve avoided walking any real distance for the time being. I’m seeing my doctor tomorrow to address the hand. Floor exercises that don’t depend on my hand so much have been an okay stand in, but they feel totally unsatisfying.

I am terrified that my hand injury is chronic, that my slight pudge is the beginning of a back slide… im now up against an entire host of factors: physical wear and tear of a disabled body, shifting hormones, slowing metabolism that comes with age. My doctor usually just says to keep active and watch my diet, which is laughable. I am terrified most of all of getting more difficult to pick up if I fall in a way I can’t get myself off the floor. I want to be lighter and physically stronger for myself and those around me. I want to keep moving.

I feel fat and lazy and sort of defeated right now. (Note: half of this is most certainly PMS😂😭😂).

Anyone else feeling the same? What has pulled you through these moments?

Used to fly free with child under 2, and she sat in our lap. Now she will be turning 2 and cannot do free lap seat.

We are flying a week after she turns two, and have been told she will need to sit in a seat. Has anyone been able to get around this or recommend any car seats/ adaptors for plane seat. She is 20 pounds with little to no stability.

Thank you!

Hello! I am twenty years old and I have mild hemiplegic cerebral palsy.
I have been going through left leg pain for just over a year and nothing makes it better. I have done steroid injections, but the relief is temporary. My doctor says that If I get too many shots, I'll get weaker.
(My left side is my strong side so I am scared)

Anyway, I met with a orthopedic surgeon and she wants me to try an SMO brace before considering surgery. I have very flat feet and roll onto my heel which is why my foot constantly hurts and why the pain just won't go away! I meet with her again i April. She said that if I were to do surgery, she would do:
1. lateral column lengthening on my calcaneus
2. plantarflexion cuneiform osteotomy
3. gastroesoleus(?) recession

I just wanted to know if this surgery will be worth it. I just KNOW that I want this pain to stop, but I just wanted to know if any of y'all have done this type of surgery and if it might cause problems. (I'm sorry if this is stupid. I never have gotten orthopedic surgery, so I'm just nervous)

Thank you all!

Hi Team
Im in my 40s and my left hand is basically non functioning, is this because I didn’t get any treatment early on? I have no idea if I got treatment for it specifically, I had gotten PT as a kid but not sure what for.
Im fully independent.
Do others here who are hemi cos of stroke have basically no function. If I move my right thumb my left moves slightly.
I just want to know if I had proper intervention, it would have been better but I don’t know if I had it?

So, I've talked a little about my situation in some comments on others' posts, but I wanted to share something of a win I had yesterday. I woke up in some serious pain (hairline fracture in my right ankle. I've had it for months and it isn't healing despite the physical therapy I've been going to. I'm booking another podiatrist appointment for it). Anyway, after getting around my house with help from my family, my mother brought over an old walker my father used to use.

I can't believe I'm saying this, but using it was the first time in years I felt comfortable being on my own outside. I didn't need to hold on to anybody and I felt like I could actually go somewhere without relying on someone else. There are so many things I want to do, but haven't been able to because of my lack of independence with walking. I still need more time to get used to it, but I think yesterday was a very good sign.

My point here is, if you feel you're struggling with your mobility, don't be afraid to experiment with another aid that may provide better support for you. I haven't stopped using my cane, either. I still use it in my house. I think the walker may need some adjustments, but I'm hopeful one of my biggest issues may have a solution after all.