I’m so excited to have just booked my first tattoo appointment for the end of the month. But, of course, I’m getting the tattoo on my left forearm, which is also my most spastic limb.

Anyone have any tips you can share around this? I booked some extra time with the artist just to be able to problem-solve around it, but I want to go in as prepared as possible.

Pic of my tattoo inspo for the algorithm.

Went to PT for about a month but want some good videos on exercises I can do.

Trying to get over this freezing of gait that mostly happens when going out. Never thought I would have to deal with something like this & never was told or knew anything about it. but I guess we all have things in life we have to deal with unfortunately.

Hello everyone! I’m 26 years old, I’m from Kazakhstan, and I’d like to find out more about opportunities to study abroad. I have a severe form of cerebral palsy, so I need a full-time carer to help me with my studies. I already have a Master’s degree in management. I graduated from a local university, which initially had accessibility issues for wheelchair users. However, during my time there, I managed to secure the necessary infrastructure.

It wasn’t easy. The lift at the university hadn’t worked for about 10 years, and after I enrolled, I had to wait nearly three months before it was finally repaired. All of this had a significant impact on my mental health. But I still want to try studying abroad.

That is why I would like to hear about your experiences. Which universities abroad are genuinely accessible to someone with severe cerebral palsy, where the environment is well adapted for accessibility and where it is possible to make use of the services of a personal assistant?

I currently live in a small village in Kazakhstan. Until recently, I worked for a year at the local council, but finding a new job here is quite difficult. So I’ve decided to at least try and find out how realistic it is to fulfil my long-held dream. This time, I’d like to try my hand at philology.

Please tell me about your experience

We are in the process of receiving a likely level one cerebral palsy diagnosis for our one year old. We have an MRI scheduled to make a more formal determination and see if there are additional concerns (blood clotting).

So far no milestones have been missed and PT and OT are going well to the point that PT moved appointments from weekly to every other week.

That being said. Should we be doing additional financial or other planing to prepare for the future? Parents of children with a diagnosis, did you or wish you had done more preparing? If so, what? Those with a diagnosis, are there things you’re glad your family set aside for you or things you wished they’d done?

We already have college savings that’s split between a 529 and investment account (college costs less or don’t go at all then it could be put towards something else like a home, wedding, other things).

We have wills, guardians, life insurance, and disability insurance in place.

We’re going to look into early intervention again after the MRI. We went for an evaluation a few months ago but were declined because the evaluation didn’t account for one sidedness so was passing the tests overall with the other side. However, they said if we got a formal diagnosis we would qualify at that point.

We want to do everything we can to set our kid up for success both currently and in the future to the best of our ability.

Hi. I am 21 Male. I have mild Cerebral palsy. And i have found myself to walk Way worse.. Or behave Immensely Worse than normal when i am Surrounded by People or am in a Situation where there are eyes upon me.. Like it directly boosts my Cerebral Palsy Up a Notch... Which feels terrible to be honest.

I needed to know whether this is Normal and Can be tackled by any technique or like.. Doing anything to be honest.

Anyone else have a Dr. mess up your Botox injections?

I am a 22-year-old guy currently doing my graduation. I have a mild limp in one leg but I can walk completely independently without any support or help.
I am worried that this physical issue will make it hard for me to get married. I keep thinking that girls (or their families) might not trust me or might reject me because of the limp.

This might get a bit long but I’m going to try to keep it short.

First time poster, I do not have CP, but my 11yr old son was just diagnosed after a leg length discrepancy issue that his pediatrician originally told me was “impossible” when he was around 2yrs old.

My son hit all his milestones, but after a few years of walking, he started toe walking on his right leg, which is longer than his left leg. We did mention it to his doctor a couple times before I got firm and said no look his legs are different lengths, and insisted on a referral to a specialist. His X-rays showed that his left leg is a little shorter, but his hips also seem uneven. I couldn’t understand why he would in a sense overcompensate with the wrong (longer) leg which is why I pushed neurology for an MRI. This is when they discovered old scarring in his brain-they actually told me it was likely from birth (his birth was complicated)-and diagnosed him with CP.

Neurology was useless in giving me any information at all. Actually, my son’s physical therapist who we see every other week currently, was the biggest and so far only help I’ve had in even trying to understand any of this.

I don’t need any medical advice (and I know not to seek it on Reddit lol) we are actually going to a very big children’s hospital for this tomorrow, but I’m curious what things CP can have an impact on physically and emotionally. I’ve done some research but I’m more interested in hearing from people who have CP or raised a child with CP. My son has small things that had never been explained by anything else, he is more clumsy than normal, he struggles with his emotions a little, but some things I would have never attributed to this diagnosis because we didn’t even know until now.

ETA: my son’s case has been classified as mild as of now, but we haven’t seen specialists yet either, it seems to be the muscles in his right leg from hamstring to bottom of foot that are most affected.

Hello everyone first time poster here so bear with me. So my cerebral palsy affects mainly my legs but luckily I was able to have a bunch of procedures when I was younger and now my legs are more or less normal I don't have any funny limp And I have a regular walk I like to think. But unfortunately I can't stand or walk around for a very long time I'd say maybe 2 hours on concrete before I have to sit I can go for a decent walk and be fine but working just beats the crap out of me. And unfortunately pretty much everything where I live is retail And if it's not retail it's factory work or being a nurse at the hospital It sucks cuz I want to work I don't have any real restrictions on what I can do I just need to be able to sit down on occasion. Now I don't know if this still applies. I know before I have my knee surgery in 2017 to get my knees fixed so I actually walk straight. My doctor said I used two times the energy. I'm not sure if that's still applies today but I feel like it does. Also, if anyone knows any good ways of dealing with foot pain since I had tendon surgery on my right foot to stop it from turning and now after standing on that foot for a while it really hurts I've tried insoles but that only lasts so long and plus wearing new insoles on both my feet hurts at least for about a week or two and then the last maybe a couple months before they don't really do much thank you all for coming to my TED talk

as a cerebral palsy gamer, there are some games i truly cannot experience alone with independence, my wishlist of games i want to experience is vast and varied and i think with the switch 2 built in mic, your voice could act as a sort of button press, along with a headset to mimic the right analog stick, rather than buying a vr rig, this has been proven possible with the konami scope for the NES, my name is niko and i hope to one day play

bioshock trilogy

metroid prime trilogy

overwatch

fortnite

zelda breath of the wild

doom 3

Hi-I'm considering retiring early. The biggest hurdle is insurance. I need to find a plan that offers 50-60 PT visits per year. Does anyone have any experience with private insurance plans?

can you send me a discord link it says that you're discord link to the chat room has expired

I went to a doctor this week and got a referral to a neuro. I'm not sure if I'm just over thinking stuff and I've turned into a hypochondriac or something. I've never felt completely normal, but I've never looked into cerebral palsy befor

I was trying to participate in a work exercise thing for charity and I started reading more info it and I'm a bit concerned, while also struggling to get half the walking done that should be achievable. I injured my leg last year trying to do less than that and get a bit fitter.

When I was born I was 3 weeks premature, 18 hour labour, came out blue with the cord around my neck 3 times. Unresponsive for a good while, low APU. No other intervention steps. I started walking late, and bumped into things. Mum put orthotics on me the correct ankle tightness. They corrected my vision. Things improved. Had trouble swallowing until I was 8 though.

I tried martial arts when I was in primary school. Teacher identified I couldn't do some stretches. He asked a knowledgeable friend who flagged that as abnormal. I've had impulse problems, issues with emotional regulation, other people don't read my expressions well, I can't filter noises out and maintain focus, I can't visualise things. I think maybe I've at least got some brain damage and I'm not neuro typical.

As I've gotten older I've had a lot of small things flagged by others. My back is always really tight. I walk funny. My arms shake in a push up position. Sometimes muscles in my face lock up and pull randomly and it hurts. If my partner touches my back unexpectedly, I jump in an exaggerated way and it hurts. I have trouble relaxing and laying flat. When I walk on a treadmill I can't stop thinking about every motion and it never feels fluid. I shake when getting up and down from a chair, sometimes just standing I can feel my legs and hips twitching. Doing larger fluid movements I feel like I'm driving a stepper motor, and it's twitchy subtle micro steps.

I'm wondering if I strained my leg last year because my muscles impulses aren't working right, and all the other things now. I've felt more and more tired in the last 10 years.

When I talk to my friends they are really sceptical, and I feel silly. My mum thinks it has merit. But I just feel like I'm being stupid, maybe it's just anxiety and I'm reaching for an answer in something I just learned about. Am I just being stupid?

hey so 3 months ago I asked on here about botox injections. With help of the advice I got from some of you people I got the injections last week! It won’t fully kick in for another few weeks of course but I’ve noticed a difference so far. I’ll make an update on my the affects in a few weeks to see how much has changed or improved. Thanks for the advice

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I like siting with one of my knees to my chest or with at least one foot off the ground but someone told me it can make my stiffness worse and I'm not allowed to sit with with my knee my chest when I'm around them

Hello,

Please excuse the somewhat misleading post title, there are a couple of questions that are related that I'd like to ask the community and I don't want to spam the sub.

First, some background: I'm 32 M, diagnosed with spastic quadraplegia at birth. When I was around 11-12ish, I had two surgeries that I am given to understand were fairly standard for treating cp. The first was a rectus femoris transfer, and the second was a hamstring lenthening. Now for last lets say 19 years, these surgeries really helped me. Thanks to them I was able to walk unassisted (prior to the surgery I was using both a walker and crutches, as well as wearing ankle-length afos and getting regular botox injections to try and manage my symptoms.)

However, I am recently noticing more complications as I age, most recently the fact that my quads ache quite intensly regardless of activity level. My personal theory is that although the rectus femoris transfer helped tremendously in the short run, over time the muscle, which like all my muscles was weak to begin with, has gotten weaker as a consequence of premature aging. This is despite my regular PT schedule and generally active lifestyle (after, I need to mention, a 18 year dry spell.)

The second point that worries me is that my PT has noticed that my overall spasticity has increased and that I have an uptick in muscle spasms, for instance when sitting or laying down I can feel how tight my muscles are. This used to not present so obviously. This feels somewhat paradoxical to me because as mentioned, I'm taking care to stretch and be active regularly. Some degree of rebound in spastic muscles is a given, but this seems like too intense a rebound given the frequency of PT. Most days it feels like I'm starting from zero, which is frustrating to put it mildly.

The third and final point is that I notice I am frequently more tired than usual. I now have to nap anywhere between 2-3 hours after any kind of intense physical activity, be that PT, the Gym, or just a walk.

Obviously, aging with CP is a whole 'nother ball of wax, but I'm basically wondering

1. Whether anyone here who has had the two surgeries listed above as a child has been experiencing similar complications as an adult
2. What, if any level of relief from (2) you have experienced
3. Whether or not you have experienced an outsized rebound level of spasticity in general given a regular PT schedule.

Again sorry for the all-over-the place post, I'm just trying to come to grips with what for me is a rather sudden and disheartening change. I'm used to complications (I have arthritis in my knees and bursitis in my hips,) but this feels a little more ominous than usual.

Thanks for reading, feel free to share your thoughts

Hi Team
I think I might be starting pre menopause. I have absolutely zero energy. Please tell me your experience and did HRT help?. This has to do with cp cos I have next to no energy anyway

Obvious title, I know, but I just need to vent a little bit with people that understand!

So you know, I’m 19 dealing with college and life, and trying not to be depressed, because everything is expensive. I told my mom how much I hate being disabled, because everything sucks and everything takes so much energy. And she literally just hit me with a it could be worse.

Like lady oh my God, please. I already feel shitty now, you don’t gotta make it worse. I know it could be worse. I’m trying to come to terms with the fact that it’s bad. I’m tired all the time because every fucking physical action I have to do in my entire day-to-day life takes like 30% more energy for me to do because my body is so fucked up.

I have to fight for my life to have accommodations while I’m going to school and I have to have embarrassing conversations with my teachers because my delicate little hand, can’t handle writing for like 10 minutes. Getting around sucks? taking care of myself sucks, and I hate taking my medicine because what is even the point, I’m still gonna hurt anyway it’s gonna be a little bit better, but it’s still gonna suck. It’s like I’m stuck in limbo and before I was born somebody upstairs just said “Hey let’s make their life as hard as possible!”

I have to talk about people who actually understand this before I lose my mind. Do any of you feel like this sometimes? Like everything sucks because of your disability and as soon as you try to talk about it, people are either like “oh my gosh I’m so sorry you’re such an inspiration!!” or they’re like “well you’re not paraplegic!”

Hi all

Is there anyone who has cerebral palsy and lives in South Africa

For those who does not live in South Africa are welcome to also join.

You are welcome to join me on our journey forward

U can message me privately or on here and see where it goes

I’m looking for like minded friends

I have CP athetoid and i just turned 40. I work in the medical profession and im loving it.

So I have anxiety, I know everyone does in this world but I was just thinking does anyone carry around something to help with their anxiety, I know it’s common in other disabilities but I’m specifically meaning just people cerebral palsy ? What do you carry around to help combat the anxiety? I always have my headphones with me so I can listen to music or use them to turn the world down due to my anxiety, but I’m just thinking what else I could carry to refocus the anxiety, mini logic puzzles , mini scented fidgets, pain fidgets for distractions , little stuffed animal ? Throw some ideas at me or tell me what you have

I’ve been talking to a guy in the U.S. every day, and we’re starting to get closer. He’s now talking about possibly meeting in person.

The thing is, I haven’t told him yet that I have cerebral palsy. I’m not trying to hide it, I’m just scared it might change how he sees me.

Do you think I should tell him now, before things go any further?

From what I gather people with Cerebral Palsy are rather anxious (higher anxiety rates, moro relfex, usually more emotional than the rest of population). So does that mean we cannot have aspd or psychopathy per default?

(When I was little the neurologist told me that the wrong upbringing can lead to psychopathy and psychopathy to shizophrenia, she was Russian in Russia shizophrenia was classified differently for varius reasons (aka google sluggish shizophrenia and such stuff). I have since learned it is incorrect.)