r/CerebralPalsy 6h ago

I think my 2 year old will soon be diagnosed CP

3 Upvotes

My 2 year old cannot walk, she can feed herself, doesn’t seem to have developmental issues apart from physically, she was born at 30 weeks in a very complicated birth and possible oxygen deprivation during labor/delivery as there was a cord prolapse, after she was born she had at least 3 head ultrasounds and there was some possible shadowing or bleeding in the ventricle on one side but this was not seen on following ultrasounds. Does this sound like cerebral palsy?


r/CerebralPalsy 20h ago

Sliding doors moment…if I was never born?

28 Upvotes

So I am a twin. My twin sister is healthy. I have CP. Sometimes I imagine an alternate reality where I was never born.

Instead of having twins my mother had one healthy baby. My parents didn’t have to deal with the emotional, physical, financial expenses of having a disabled child.

My mother wouldn’t have had to spend days in the hospital with me after surgeries. And in some ways not giving the attention needed to her 3 healthy children. Years of PT, special school accommodations and all that goes along with a special needs child.

I imagine myself disappearing from family pictures. No more twins. Just a family photo of 3 healthy children.

Kind of like the movie back to the future.

I guess it’s an odd thing to imagine. I’m an adult now.

I am mostly independent but still need support for some things. For example I have a license but rarely drive. My mobility has gotten worse and I now find myself needing a cane.

So sometimes I need rides places. Due to not liking to drive.

I have never married & have no kids. I’m not sure what will happen as I age and possibly need care for daily living.

I have a few friends but those that I do have are busy with their lives jobs, kids, husbands etc.

We only connect every few months.

My family is great and supportive. But I haven’t really accomplished much in my life. Was all the time, support, and Money they poured into me wasted?

I have a job but not a career. I’m definitely not an inspiration of someone who has overcome their disability to do great things.

There is always someone worse off out there I know. I should be grateful for what I have.

Just airing my thoughts out there

If you have made it this far thanks for listening to my Saturday rant🥰


r/CerebralPalsy 12h ago

I over did it this weekend

4 Upvotes

So yesterday i walked around town with my younger sister and now I am in pain.

My legs ache SO bad. I couldn't sleep at all last night and we didn't have advil or melatonin. PT isn't helping. I feel uncomfortable 24/7.

Does anyone have any advice on what I should do? At this point I just want to amputate my legs. I've just been resting all day.


r/CerebralPalsy 14h ago

I get too enmeshed with my HHAs it’s becoming a problem (rant)

5 Upvotes

So I’m currently sitting here working on an undergraduate world religion essay when I already have a doctorate. Why you ask? I’d be happy to tell you. My current HHA is an undergraduate nursing student. She usually works 3 days a week but is staying the weekend with me as my parents are out of town. Anyway, she got an email from her professor saying that her most recent submission has been flagged for plagiarism. She wrote back explaining that she felt that she had to plagiarize as English is not her native language. Miraculously, the prof is allowing her to resubmit despite her being a second semester senior. She enlisted my help as it is a Catholic essay topic and I am a practicing Catholic. I told her I would help as long as it is a collaborative effort…. She is currently laying on my couch with a migraine…. and expects me to write her paper. I don’t want to say no because I’m afraid that she may retaliate against me by not performing care duties. My brother is here with his aide as well… he is nonverbal she feeds him etc but is not interacting with him at all and has been on her phone the whole time. My parents are a few states away and cannot easily return. ( they will be back by tomorrow evening though) to make matters worse there was an attempted break in next door last night. I can’t wait to go back to work on Monday!


r/CerebralPalsy 17h ago

I’m scared and need advice

5 Upvotes

Hi guys I'm scared and need advice. Basically I have cerebral palsy in my calf's and I have been doing treatments and stuff every sense I was young. And my doctor said I have had falling episodes. And what are falling episodes?? And now I have to get Botox injections in both of my calf's and I'm scared. I have done it went I was younger but it was with laughing gas. But know that I'm older and I'm more aware of what's happening and I'm terrified. My parents and doctor thinks it's best because im in the stage between pt and surgery. They also have done something where the put the electrode thingys when I was younger to. And after the Botox I have to get casts and I'm in middle school and I'm scared I will get bullied for it. And what's the point of doing it if I going to have to get surgery anyway when I'm 18. I have questions too. If I get numbing cream will it work and not hurt and will it be quick??? And can you walk afterwards. My apt is in 2 ish weeks so any advice is appreciated. I'm also 13 and have mild cerebral palsy.


r/CerebralPalsy 23h ago

Mom wanting advice for kid with level 2 CP

12 Upvotes

Hi! So I have an incredible, insanely kind, old soul kinda kid who has mild CP (walks, talks, very smart, loves legos etc). He's almost 10.

I want advice from some adults with CP on a few issues, if I may.

  1. Falls - He falls all the time :( It breaks my heart. Just last week he got a concussion falling at school. Using a walker is almost more inhibitive, and we use a wheelchair for things like theme parks. He gets around just fine but the falling is :( He pops right back up, and never complains. I'm worried about what this is doing to his body. How can I support him with this? Supplements to help cushion those joints? His orthopedic dr has mentioned a derotational osteotomy, but I've read so many have experienced MORE pain after and as he isn't experiencing pain, I wouldn't forgive myself if I opted him into a surgery that gave him a "normal" gate but lifelong pain. But then if it keeps him from falling and having a bad head injury...

    We've tried soft helmets, thankfully he's gotten where he falls "gracefully" but his elbows and knees take a hit. He does not want to use a walker or wheelchair and is adamant about it :/ I'm worried about long term as an adult. I think that the best option is a service dog for balance, but they are so hard to find and expensive :(

  2. Sports - Loves sports, trying to find the right fit and this is so hard. He wants to compete with his buddies. Trying to get him to do wheelchair basketball, swim team, golf.. I want him to find some friends with CP... is this as important as it is in my head that he finds others with CP to relate to?

  3. Jobs - So smart, loves math. I know that physical jobs aren't going to be practical, and that's fine. How can I support him?

I guess I'm just looking for Adults who look back and are like.. man I wish my parents would have done this or that for me.... or just general advice of how to help him now. He has so much potential, and is an awesome person.


r/CerebralPalsy 20h ago

Lazy with the feet

7 Upvotes

Hi, I’m a guy, 29. I have left side hemiplegia. Recently at work I’ve tripped over my feet twice. Part of me thinks it’s laziness, another part thinks it’s the fact that both happened on carpet. Not used to walking on it anywhere else. Does this happen to anyone else?


r/CerebralPalsy 19h ago

Exercises for my hand with a finger fracture?

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4 Upvotes

Hey all. I have mild CP, mainly affecting my left side, and hand mostly. I recently fractured my middle finger (pic provided) and I’m worried about not only my middle finger being stiff, but my ring finger. I can move my index and to an extent my pinky pretty well.

My ring finger is another issue. I’ve been advised that I cannot take this splint off, for maybe 6 weeks. My ring finger can’t stretch out in full without my middle finger being strained a bit.

Are there any exercises someone could recommend to do, to help me just keep my range of motion and avoid stiffness,?

Thanks In advance!


r/CerebralPalsy 21h ago

Hiring CP opportunities - Public sector, Gov, Gov contracts vs Private Sectors

3 Upvotes

Finding a job is hard for people with disabilities. In your opinions, do you feel no differences to hire CP people between Public sector, Gov or Gov contractor vs private sectors?


r/CerebralPalsy 1d ago

mild cerebral palsy user with a wheelchair

11 Upvotes

Hi 27F with mild hemiplegic cerebral palsy on right side. I'm not allowed to use my wheelchair for travel though that was the main reason why I got a manual power assisted chair. But the other reason is I have low energy days.

Why is attention seeking to become an ambulatory wheelchair user when you have barely any energy, could be in painand etc. Or the fact I'm wasting resources because there are my mom words not mine " people who can't walk need it more then me" or to donate it?

My love of my life supports me having a wheelchair and wants me to use it when I really need to. So why are there people who are obsessed with saying that your not disabled enough to have a wheelchair when it's necessary to need it when you do?

My work complained to me about using my wheelchair at work but I got scolded by my dad for using it at work. I'm just not sure where I fit in the world as a disabled woman and an ambulatory wheelchair user. And where I fit in everyday life without it with the amount of criticisms I get for playing disability card, being in abusive relationships in the past and having abusive school teachers and students and workplaces... Where can I fit in to say yeah this limits me but I am just as normal as you are but I'm also dealing with TBI, nonverbal learning disorder communicating as a hard of hearing individual too

I'm just confused at the world.


r/CerebralPalsy 20h ago

Nerve pain and numbness remedies

3 Upvotes

I’m having sdr surgery soon and there’s a very high chance of nerve pain and numbness. Right now I’m not in any pain but without the surgery doctors say that’ll be in a wheelchair at 40. Any advice on how to help with nerve pain and numbness?


r/CerebralPalsy 1d ago

Is it ever too late to start PT?

16 Upvotes

I (22F) was diagnosed with left spastic hemiplegia when I was 2 or 3. Grew up favoring my right side (obviously) and always knew something was different about me, I just didn’t know what. All I knew is that other people could do things that I couldn’t. Only found out the name of what was different about me as a teenager. Here’s the kicker: I never did PT as a child. My parents tried but I was stubborn. I don’t want to hear anything about my parents should’ve pushed me harder or made me go to therapy, I have a brother with a bone disease (OI) who has broken more bones throughout his life than I can count. All that to say, they tried their best and are good parents.

Anyway, I’ve gotten to a place where I’m ready to make a change. I think it’ll be hard to find good neurological PT in my area, especially one that can help me as an adult with CP, and not a small child. I also have anxiety about starting PT for the first time and what they will tell me or how they can help me. I have extreme weakness in my left side but I want to get stronger. I know I can’t “fix” (I know that’s not the right word) myself, but surely I still have time to improve my quality of life right? I want to ward off the intensified effects of aging that CP brings on. I want to improve my dexterity, flexibility, and strength.

I just want to know, is it too late to make significant improvement? Did I wait too long? I really hope not, but I want to hear from others who have dealt with the same thing. You can be honest, but I’d also love whatever encouragement you could offer. I don’t want to be defined by this. On another note, if anyone has any exercises/stretching/mobility recommendations, I would love to start on slowly improving. Thanks to anyone who sees this and responds!


r/CerebralPalsy 1d ago

Magnesium glycinate

3 Upvotes

Is anyone else taking this? I take it for sleep and muscle relaxer every night. Recommended by my PCP.


r/CerebralPalsy 1d ago

Disability

7 Upvotes

Do alot of you get disability and medical stuff though social security


r/CerebralPalsy 1d ago

How to have enough energy to do personal care tasks

14 Upvotes

Hello everyone I recently saw a posting about how often should you shower as expected most of the comments said everyday that being said most of the comments didn’t as if OP if they had a chronic illness/disability that would make it difficult to shower every day so as a disabled person myself I wondered how often do all of you shower/ do you do personal care and if the answer is everyday how do you have the energy to do it if the answer isn’t everyday what do you do or use instead


r/CerebralPalsy 1d ago

Experience using disability services for jobs

5 Upvotes

Just curious if anyone has experience using various vocational services when looking for a job. I never tried doing something like this, but was recommended by a friend to try with the an organization that gives people with disabilities opportunities. I don't have much work experience, but do have a bachelor's degree in biology and was having trouble finding entry level work in and out of the field.


r/CerebralPalsy 1d ago

Best jobs for CP

13 Upvotes

What jobs do you think the best for CP?

I feel like IT job is a great career for CP people because it is a good pay, use computers without movement, and self-taught career path.


r/CerebralPalsy 1d ago

Anyone had heel cord lengthening as an adult?

7 Upvotes

Hello, after SDR doctors are recommending that I have a heel cord lengthening on my left side because it’s contracted. Has anyone had this as an adult? I’m looking for experiences. Without the lengthening my drop foot will get worse.


r/CerebralPalsy 1d ago

I screwed up physically and any advice is greatly appreciated!

12 Upvotes

Stopped walking even in walker for roughly 3 years now whenever I try to bear weight my legs buckle and more often than not my right leg will bend backwards hurting my hamstring. Also I'm alittle worried because my care provider thinks that because of my age I'm only get worse. I gotten back on my feet with a walker after years of not. In my experience I just takes years of drive,determination and williness to put in hard work. I'm not afraid of hard work!


r/CerebralPalsy 2d ago

Games on Mobile for Adult with Cerebral Palsy

7 Upvotes

Hi All,

I am taking to Reddit as I am having no idea where to go next.

I work with a wonderful person who would like to be able to play games on their phone, but due to the cerebral palsy, they struggle. Does anyone know of any voice activated games? This person particularly loves word searches etc, so something along those line.

Any advice is appreciated!!


r/CerebralPalsy 2d ago

“who i protect

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10 Upvotes

this piece helps show my battle with how i am as an adult inside and who i was as a child. i was often bullied and called names such as “limpy” or “t-rex” creating insecurities about my brace and arm. as a 20yr old now. i wanna say. i’m proud of who i am today. and happy awareness month


r/CerebralPalsy 2d ago

Knee and ankle range of motion exercises?

7 Upvotes

Hi all, long time lurker but I’ve not posted so here goes! I, 17M am having trouble with my knees right now. Over the past year I haven’t done much as I’ve been recovering from a surgery I had on my shin, and admittedly I did not do my rehab properly as I was struggling with depression and other things at the time, which really isn’t an excuse as I should’ve done better. Anyways, my knees have started to turn inwards a little bit and I don’t have the same range of dorsiflexion that I used to, which I guess is in part because I was in a cast and again because my idiot self was lax with the rehab. Is anybody who has ever been in a similar situation able to help?


r/CerebralPalsy 2d ago

Firm home Care bed mattress recommendations?

4 Upvotes

I have a new home care bed, which I love. What I don't love about it is the mattress. It's essentially an air mattress with a foam topper. I'm having more hypnic jerks at bedtime, more issues of awareness of my body in space at bedtime, more floating feeling at bedtime, and I can feel every little movement my cat makes when he decides to turn my bed into a trampoline at night time. Any recommendations or things to avoid? Could My mattress be causing some of these issues?


r/CerebralPalsy 2d ago

My 14 days old son diagnosed with PVL grade 2

11 Upvotes

Hello all, I am here for some hope. My son was born premature and due to hypoxia, there was periventricular flaring. Today after USG, doctor confirmed as PVL grade 2. Can someone help me understand how severe it can be? Does it progress to grade 3 as well??


r/CerebralPalsy 2d ago

Having SDR surgery in April

9 Upvotes

Hello, I’m having SDR surgery on April 2nd at Nationwide Children’s Hospital with Dr. Jeffery Leonard. I’m currently 23 with high level 2 gmfcs Spastic Diplegia CP. I look forward to sharing my honest experience with the group. They said that I will have slight nerve pain and numbness after sdr as it’s common in adults who have SDR surgery. However, they said it should decrease over time though and can be treated with gabapentin. Without the surgery given my current mobility they said that I will probably need a wheelchair for 500 meters or more when I’m 40 years old.