27F with spastic hemiplegia. Went on 2 dates this month, with two different guys, I THOUGHT ths dates went well. I tried to kinda glaze over the fact that I have spastic hemiplegia, but a set of stairs and trying to cut my food ruined that for me. I could see it on their faces, clearly uncomfortabl; and ive been ghosted. Its discouraging, makes me think that when my dad kept reminding me that "no one wants a disabled wife" when I was younger, he was probably right

Hello! Hope everyone's doing good 😁 I am 28 (F) & have left side Hemiplegia. I work full time in Education as a receptionist (UK) and although I love my job & the people I work with, it's draining me. I left a job in a pre school for a desk based job & it does help slightly as it's less physically demanding, but I still can't help feeling exhausted all the time. I can't ask for work from home days because I'm at the main front desk & I deal with students and parents. Naturally everyone's going to feel tired after work, but the way I'm feeling I can't shake it. I try to power through. I don't have the energy to come home and make dinner & when I do it's straight to bed. My husband takes care of things a lot but I don't like leaving all the house work to him to do alone. I have epilepsy as well, so if I'm too tired I can experience seizures

I feel like as I get older, my cerebral palsy is getting worse and I'm scared for myself. I'm just not sure if it's just me experiencing this? I really thought switching jobs would help with my energy levels but it's not. I just want to sleep🥺 I have thought about part time but right now I'm trying to save as much as I can so we can start a family. My husband is totally ok with me going part time but it's more of a me thing where I want to have more money for myself. Should I talk to HR about the way I'm feeling? Do you think it's worth staying full time or am I running myself down a rough path? Would just like to hear someone else's experience and how they've overcome it. Thank you! X

I wanted to share this in case anyone is interested in participating in research. It's important to shared lived experience if we want to see change.

Recently I saw a neurologist for the first time in forever (my cp is very mild, so I hadn't felt I needed to seek a neurologist's help until very recently, because of an increase in pain) and for the pain I've been dealing with, he prescribed me a low dose of gabapentin, to take as needed. I've never taken something like gabapentin before, and I'm nervous about the potential side effects. If the side effects are really bad, or I feel like it's not the right medication for my pain, I can just like...talk to him about it and stop taking it, right? I know this sounds dumb but I've never really been prescribed hardcore painkillers like this for my mild cp before. I plan on trying to take my first dose of it very soon just to see what happens, fingers crossed!

I'm a writer, and I used to write romance novels. Now, I'm aunt to 5 Nieces and nephews, (3 girls, 2 boys.) I started working on children's books.

Anyone get tired from taking this medicine. Any tricks to be less sleepy.

My son is 16 months he was a micro preemie and had bilateral grade 4 brain bleeds at birth and has a vp shunt. He was recently diagnosed with cp we knew very early on tho. He has no cognitive delays, although it’s improving very well he is low tone in his torso and neck. He bares weight really well tho and is only tight in his hamstrings. His arms are a mix of low and high tone. He can’t bring toys to his face or pick them up without help but sometimes recently has tried more often to. He has a gate trainer, a stander, tumble form with a tray, and a Firefly Seat to go Chair for travel. Because he has no cognitive delays he gets upset and bored very easily and gets so hard to play and walk and gets frustrated when his body doesn’t do what he wants. I am a stay at home mom so time isn’t really a problem, I don’t have a car tho so going places during the week other then therapy doesn’t happen

i have a couple random questions for people with cp and parents

1.what are your stretching routines, how often, what helps the most especially with your legs? He is in therapy and has a small checklist we do ever morning and mid day but i feel like he would benefit from more then the few small ones they gave us

1. What activities do you do that really benefit you physically and mentally? I am looking to getting a y membership for swimming but i dont have many options near me

2. Mostly for the boys and men. What activities did you and your dad do to bond? My fiancé has a hard time finding things that work bc most of his hobbies aren’t very accessible for our son to participate or do.

3. what is something your parents or someone special do for you that helped a lot with the mental aspects? He just seem frustrated and confused on why he can’t do things and it’s t really old enough to understand that

4. What can i do to prepare him for the world and pre school? anything helps i know he is young now but i want to be as prepared as i can

5. Last question, what activities do you think i could do with him now that would keep him entertained and engaged?

I really struggle with putting on my shoes correctly and I suck at directions. Yet I'm highly educated and bilingual.

I have spastic quad CP but my right side is obnoxiously weaker than my left. I try to use my echelon to exercise but when I'm done only half of me hurts lol

Have you guys found a way to isolate muscles so that your dominant side doesn't take over?

My cp is mild I can do almost any exercise 🙏🏼

Looking for Louisiana severe cerebral palsy to talk to...? Bonus points: if you're over 30, and type with your mouth.

im 19f, first post here. i have cp mainly in my right leg. i wore afos from the time i was probably 2 to my sophomore year of highschool, i just graduated highschool this year. i’m getting new afos as unfortunately my right leg has gotten really bad about dragging and putting my full foot on the ground (it’s been a struggle my entire life) but this past week, ive had pain in my right thigh and it seems to be when i put weight on it. i do stretch my leg at home (when i remember to because the effect of stretching doesn’t really stick per say) and at pt. i brought up the leg pain today to my therapist and they said yeah it could be your hip or something (i forgot what they actually said) but now im spiraling about possible surgery. i’ve also been casted for my new afos about a month ago, they just haven’t came in yet. could someone give advice/tell their experience about going back to afos after about 2-3 years of not wearing them and thigh pain? also also sorry if this is all over the place😅

Hi everyone, hope you're doing well and staying safe :-) I'm Trey, I'm located in the UK. I'm totally blind and I have only the use of one hand and walk with a limp because of cerebral palsy. Because of my cerebral palsy, I need to wear specially adapted boots. I was able to purchase a pair of hiking boots which my cobbler was able to adapt. Now I'm looking for a pair of stylish trainers. When I went to the shop to look for a pair, they were all very slim and their form factor couldn't accommodate my feet. So I'm looking for a stylish pair of trainers in the form factor of a hiking boot. Does anybody know any brands that do this kind of thing and can anybody post up some good links please? Thank you very much for helping advance everyone :-)

I am a 21 yr old female with mild CP, I've never had any surgeries because my mom said it would be best to wait until I was 18. but when I turned 18 things changed and my mom wanted to go relive her hippie days and basically be homeless.. so I've kind of just been couch surfing since then. some places have been more of a long term stay (5-6 months) but I've moved from state to state a lot so I've had to cancel and reapply for my insurance many times. and I don't really know anything about how to even go about getting surgery at least to lengthen my tendon in my heel. or how the healing process would go and who would take care of me in that time. I don't have any other family that can help either.

and my CP has been progressing for the worse in the past couple years, (for context my cp effects my left side i have decent mobility in my hand its mainly my foot and leg that is affected) I can barley rotate my left foot back and forth or stand for even an hour. and there is a bump on the top of my foot from the bone being bent and it hurts really bad if i even slightly tap it against anything which really scares me..

I do love nature and going on long walks / try to stay active but some days it's like I'm nearly bedridden the next day because of how much excruciating pain i am in. I can no longer work in retail/fast food either so I've been out of work for awhile now. when I was 17 I worked at a pizza place and was able to stand for 7 hrs with minimal pain. but more recently I've been on the verge of passing out at work because of the pain of standing for just an hour or two. and i can't get any of those types of places to accommodate me and i'm very limited of where i can work bc it has to be within walking distance and i live in a small town.

I tried for SSI a couple years ago jumped through many hoops just to get denied and I don't really have it in me to try again considering I don't know how much longer i'll be staying where i am. I live with my boyfriend right now, but things have been very rocky lately for numerous different reasons... I'm truly losing hope and don't know where to go from here if things don't work. homeless shelter? group home? Ive heard many awful things about both and I am truly terrified for my future.

For individuals with a Baclofen Pump, how has it affected you?

My son was born at 32 weeks. Stayed in the nicu for 1 month exactly and we were not told he had any brain bleeding during that time.

He is almost 2, gets state assisted PT/OT 4x a week to help with his high muscle tone.

He has made so much improvements since we started PT in August of ‘24 but he is still not walking.

We have seen a neurologist and they recommended an MRI to just get a proper diagnosis but we did not do it because the doctor said she would recommend PT/OT and AFO’s as options which has is doing it and has AFO’s as of July.

Neurologically he seems fine! He is meeting milestones just not the walking milestone.

Anyone else go through this? We want him to walk so bad and know in our hearts he will! Just a waiting game.

First of all, I have very strong opinions on the pump works for me. I seen changes the moment I they got me up and walking on day 4 post op, my right leg was very weak and I could barely feel it for a couple days. And over the almost 3 years( it will be 3 years on 1/10) that my tightness has switched legs. My left leg used be tighter than my right And now it’s the opposite 😆 and my rehab doctor doesn’t know how exactly. Has anyone experienced this? I think it’s odd and interesting. This pump kind of sucks.

and please if you are same like my brother can you tell me what devices or coping strategies even thoughts that helped you do things more easily.

Hello everyone, are there people here who do karate as a hobby? Maybe someone was at the competition I-global? Let's get to know each other.

Hello,

I have reduced mobility, but I can walk (CP)

I often use an adapted tricycle for getting around or taking public transport.

However, since I cannot always take my bike everywhere, I would like to try an electric wheelchair and see if it’s something I could borrow or rent occasionally.

Does anyone have any leads in Brussels or the surrounding area?

Thank you.

24 days ago I posted about launching my podcast. If you haven't yet you can check it out here: Oops Palsy - YouTube

I'm really blown away with the amount of attention and support it's gained this quickly. I wanted to reach out to see what topics you would like covered. We've touched on the basics and the mental health aspect. We will have our first guest speaker next week for episode 8.

The whole point of the podcast is to give us-all of us, a place to be heard and being a guest on a public platform isn't everyone's cup of tea, but in an effort to make sure we are addressing all concerns in our community, I'd like some feedback on things you would like discussed or addressed on the podcast.

Naturally we avoid politics for obvious reasons. We do plan to touch on financial concerns tho as this is a big part of having cerebral palsy, but we will be saving that for later. If we gain enough traction we plan to look into creating a charity or non-profit to provide assistance but that's a big IF as we are just getting started and we don't know what the future will hold with this journey. ( again it's only been 24 days since we started ) I have big dreams for this but I like to remain practical and realistic.

Let us know what you'd like to see.

Thanks in advance guys, and again thank you all for the support.

I have a not too severe spastic diplegia that still allows me to be quite independent. I’ve always done physiotherapy, but unfortunately I had to stop recently because of some issues with the center. I’d like to start going to the gym before getting back to physiotherapy, since I want to work on some parts of my body that I don’t really like. But I’m afraid that these exercises might make my muscles even stiffer. Do you go to the gym?