r/CerebralPalsy

Hi there! My brother (age 30) has had a hard time finding a job or a thing to have him do day to day. He has worked at call centers and recently in sales and customer service. He wasn’t a big fan and was over it and ended up getting fired due to new management and not hitting quota. He has CP it affects both his legs and one of his arms. I’ve been trying to help him find something else but a lot of jobs require typing or just don’t suit his abilities. What type of jobs have you guys found, that you enjoy, that is compatible with cp? Thank you in advance 😊

I've always been hit rather hard by my period hormones. My mood swings lessened dramatically once I started birth control, but I definitely still have times where they hit me like a truck. I can go from happy and calm to melting down like the world is ending in the span of minutes to hours. Once, during one of the worst of these episodes, I went from feeling perfectly fine to having thoughts of self-harm just a couple hours later, for seemingly no reason. I didn't act on the thoughts, but they surged with such intensity that it was alarming. On that note, I can also become more vulnerable to uncharacteristic, irrational thought spirals or intrusive and impulsive thoughts, such as thinking or doing things I would never normally do, even if I'm only seized by the urge temporarily.

(For the record, I don't believe I have PMDD*, I don't really fit the criteria for it and the worst of my negative spirals tend to hit when I'm menstruating, not before it.) I know that menstrual hormones can impact people with CP physically, such as increasing muscle tightness, but I don't know if it's common for the emotional effects of hormones to hit us harder as well.

(*PMDD stands for Pre Menstrual Dysphoric Disorder, a condition where a person experiences abnormally extreme mood swings that impact their daily life before menstruating.)

Hi guys, I’m a 21 year-old male going back to physical therapy after getting lazy and slacking on my workouts so I’m pretty tight and I noticed my leg stick together whenever I stand up today is my third session and I’ve been the home routine for about a week my goal is to get in decent shape before I moved to campus at ODU next year I am also a full-time wheelchair user I was wondering how long it takes you guys to see changes because everything still feels hard My legs are still wonky and overlap. I know it’s my own fault but still.

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I saw a post from someone asking if they were a bad person for not wanting to be with someone who was already disabled and mentally ill when they started dating. And honestly, it made me think about some of my own fears.

I’ve definitely had the thought of “Why would someone want to deal with all of this?” or worried that someone would eventually get tired of my needs. I think a lot of us probably carry some version of that fear.

But I’ve been trying to challenge that because I realized some of it was my own internalized ableism.

Being disabled doesn't mean we're incapable of being good partners. We can be loving, supportive, funny, attentive, emotionally present, and bring a LOT to a relationship. We don't have to contribute in exactly the same ways as an able-bodied partner for the relationship to be equal.

And needing care sometimes doesn't automatically make someone a burden. Caregiving can be shared with other people and services. Your partner doesn't have to become your full-time caregiver. Ideally, you build a life where both people have independence AND support each other.

I also think it's important to remember that relationships are messy and vulnerable for everyone. You might become disabled later in life. Your partner might become disabled. Someone might develop a chronic illness or struggle with their mental health. You don't know what life is going to throw at either of you.

And yeah, learning how to care for someone can probably be awkward as hell 😂. But that's part of getting to know someone and building a life together. You learn their needs. They learn yours. You figure it out.

Everyone has baggage. Ours just might look different.

There are people out there who won't see our disability as some horrible burden they're nobly agreeing to put up with. They'll just see it as one part of the person they love.

I think I needed to remind myself of that, and maybe someone else here needs to hear it too. ❤️

Do you use collagen, vitamin C, zinc,... How do you reduce pain due to sudden weather changes

A little background... I (26F) had B/G twins back in September. My water broke at 22w, I was admitted and gave birth at 30+0.

During a 2m NICU stay, they told me that my daughter, (currently 10m GA/ 8m CA) has grade 3 PVL confirmed by MRI. About a month ago now, she was also diagnosed with Cerebral Palsy but is unable to be diagnosed when it comes to the stage at this time due to her still being so young. So, I guess this is what I want to know...

For those of you that had little ones diagnosed with grade 3 PVL due to being a preemie (even if your kiddo hasn't been diagnosed with CP),

-What was your journey like?

-What are somethings that I should expect or look out for?

-What are some things that you had to find out the hard way or on your own?

-And where are you and your baby in that journey today?

After extended searching, I cannot find anything on grade specific research and/or studies outside of brief mentions in PVL generalized information. Honestly, it's frustrating. Not because, I think that these doctors and medical information are failing at informing us properly, but because, I need to go down this rabbit hole, so I know the worst to prepare for (God forbid) so I can still show up for the other 3 kiddos that need me still if things take a turn for the worst. I need to go down this rabbit hole so that I can help my baby girl, one of my very last 2 kiddos to have the best life and treatments that she could possibly have.

As a parent, as many other parents can probably attest too, I don't want to watch my baby suffer when I don't know what I can do to help or even begin to understand what it is that she could possibly be going through. I don't want to be the parent that sits idly by and knows nothing. I want to be the parent that has done the research, has looked into all the options, that knows the signs, and that does everything in their power to make sure that she is getting the help that she needs.

So please... I need help down that rabbit hole... because no amount of research has helped me even make the jump into understanding her world... even a little bit...

Hello, I have cp in my right side and I got my L in bc Canada and now I need my doctor and the government to say I can drive? Am I fucked😭

My son is 10 months old and recently diagnosed with mild (as of right now) right side hemiplegic cp. His neurologist didn’t give much insight on this. He was born at 33+6 weeks and had a grade one ivh on his left side that caused some mild white matter loss but no cystic pvl. On his mri she said it showed mild loss but everything else showed a normal brain. He does have less coordination with his right hand but he incorporates it very well. He sits independently since 8 months, can get back into his sitting position when crawling, rolls both ways since 7 months, army crawls & crawls on all 4s ,pulls to stand & does kneeling play. He is on track with his gross motors for his actual age but is delayed in speech. He is the happiest baby & so resilient! I just want to help him continue to thrive! What are some things that help your kiddos with a similar diagnosis? He has been in ECI since he was 3 months but is only seen once a month due to him being on track with his milestones. He also has an evaluation soon for speech and ot!

If you guys wanted to, could you work full time and get the people you need to assist you through Your free insurance?

Pls don’t be rude it’s an honest question

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I am having surgery to correct cervical stenosis and bone spurs that are putting pressure on my spinal cord.

I have spastic quadrapelgic/ right hemiplegic cerebral palsy. This causes my neck to pull my head to the right.

My surgery is scheduled for 8am this morning.

I am somewhat nervous because of the stakes involved. My surgeon is the top neurosurgeon in my city and likely the country.

Has anyone else had this surgery? With or without cerebral palsy.

I want to know what i am getting myself into.

Looking for opinions on SRD surgery, did it make a difference?

I work full time, standing on a crutch with rarely any problems. I have a mild case of spastic diplegia walking with a forearm crutch. Get around fairly easily and well

I hate the risks of this surgery though so I just wanted others opinions first.

So I have spastic diplagia CP with coordination difficulties. I also have Ehlers-Danlos Syndrome hypermobile type, osteoarthritis in my lower back and hips and also fibromyalgia. I use a manual chair most of the time because I am terrified of falling and breaking something or dislocating something. I know that healing from those things can be very very difficult with the spasticity. I personally don't mind being in the chair because to be honest, I believe that wheelchairs are tools and if it makes a person feel safer/less exhausted to use one then why not? I keep getting pushback from therapists and family that I should "setle" for being in a chair and that I should just just get out of the chair and start walking. I feel like the more I explain my situation, the more they assume that I'm being lazy.Does anyone else experience multiple disabilities and feel shame for existing in a way that people don't understand or agree with?

Hi my name is Sahar I am 37 years old with cerberal palsy I was born in the USA but moved to Australia when I was a baby and then returned to the USA in 2008 and from 2008 to 2020 I lived in the USA but ever since my grandmother died I had not been able to find a roommate to live with . My social worker placed me in group homes many times and I did not like how they were so controlling. They controlled every aspect of my life . I am a free person and need to be control of my finances and every thing else in my life . I am currently in Australia but I am very depressed and lonely. I miss America so much . I miss my country and my roots I am willing to live anywhere in the USA besides Michigan lived there for a short time and hated it . I am a city girl and need to be surrounded by shops
If you are disabled like me who has a spare room please message me
I am very open about my life and don’t hide anything because I want to change the norm of social media and make people open their eyes that what they see is not real but unfortunately I do not get a lot of support on TikTok and Instagram. I have not build any friendships and it’s making me frustrated because I am honest and truthful about myself and I don’t know why people don’t seem to care
I pray and hope someone who’s genuine will read this and decide to help me and support me because I am tired of being used and mistreated. I met some terrible people on TikTok who’ve hurt me in ways that it cannot be undone but I keep telling myself that I cannot judge the entire planet there must be good people online
For someone like me who does not get out into the community and travel my only way of connecting with the world is online
If you wish to see my socials my Instagram is devilvsangel32 and my TikTok account is smileysarah32
Thank you so much for reading my entire post my DMs are always open

So I have mild spastic diplegia and I used to feel great now I can't walk without severe pain in my feet due to the plantar fascitis. I also feel muscle weakness. I have started taking therapy seriously and it only made pain worse doctor says I need to get back on my botox shots so that will help the stretching and relieve pain. I am just wondering after I can get insurance settled does anyone have experience getting ability back and relieving pain. Sometimes pain for me can be depressing as well just constant

I know this might sound petty but, I was recently staying with my parents. My mom was going to the dispensary for me. But, she refused to purchase any smokables for me because she said it was bad for me. To me, this felt like she was using my disability against. I wouldn't have asked her to go if I could do it myself. it just reinforced the notion that I am inferior and that people can do with me as they please. Am I overreacting?

I'm male, 35 and walk with a slight limp. One leg more affected, generally clumsy. Can run or bike without any assistance but get exhausted more quickly than my peers.

However I lack several experiences:

Traveling on my own: I'm afraid that either my body could break down severely. Or more realistically that I could get ambushed. I'm not strong nor a fighter.

Friends and social hobbies: Coming from not being competitive physically and from being scared of rejection.

Romance and sex: No experience at all. I guess this applies to most guys. Also I'm sex-repulsed but have high libido.

In contrast, no issues in my career.

To those that are affected with a similar level of CP, how are your experiences in these areas?

hey to all the young women/men with cerebral palsy what do you guys do for work/income im a 18/F im not walking right now i use a walker so technically im unable to get a job unless its with like a program but where im from the program barely accepts people but i am trying to find a way to make some money due to me wanting to buy and do things like right now im in need of $20 can’t even eat lol but if you guys have any tips/advice please let me know!

hey guys again! what’s some advice/tips on getting myself up to exercise it’s like i try but i just can’t find the energy to lock in a lot of people does motivate me i just don’t know why i can’t get up and do it i can do everything else but that🤦🏼‍♀️😩😩 yes it is very draining but idk what it is maybe depression too but who knows i just need the best advice most might say just do it you’ll never get nowhere if you don’t but howwww could i gain the energy it’s really me not wanting to do it tho tbh i do know i have to in order to navigate through life with cp but it’s hard

Dr: "Wow you have a messed up gait, thats why you have hip, knee, and back pain"

Me: "Yea, I have cerebral palsy"

Dr: "But you're so young"

He did not understand that cerebral palsy is a disability Ive had since birth and my being 19 almost 20 had NOTHING to do with it.

But, he did say I must go back to PT which sucks because until I was 12, I did biweekly PT.

Also, never joke with a doctor about how you are turning into your dad. Apparently saying your dad thats in PT, also has CP, and has arthritis, just ends up with more tests needing to be done.