Hello all! First time posting in the subreddit. I am 37M with CP on my right side. I have all the traditional challenges with balance, coordination, stamina ect.

Just found out that I am going to be a father this summer. Beyond excited! But, also nervous knowing the level of athleticism I see that it takes to carry around or chase after a toddler.

Does anyone have any parenting advice, tips, or tricks that they would be willing to share?

I am mid 30s man looking for a long term relationship and my CP is mild, but hard of hearing and speech impediment. Also, I am not a native English person, which is second language and big problem when trying to speak and listen to in English.

I tried dating app paid membership three to four times before, but it wasn't lucky and I didn't really like it. Due to I am becoming older and recently realized my some friends (non disabled people) found their lovely one by dating app, I feel like in a hurry before being too late. Only my social activity is go to church's young adults group, but I also can't find any luck there. My life is good and I already have my accomplishments like townhome and IT job.

I enjoy my single life, but young life is passing too fast. I don't want to waste of my money. Should I start dating app again?

Ok, i (25) rarely use reddit but i just realized I can talk to others with CP. So i have spastic diplegia iirc, as a baby my parents were told i'd never walk nor likely even talk. I did both, had braces on both legs, years of casting, heel chord releases, and the attempted correction of my foot turning in with surgery. That did not take, but that's for another time. I was rasied as able bodied essentially, and told i could do anything. In college I was fairly active, running a little daily. Now at 25 i'm racked with guilt because i can't work a full time job. My body just refuses to function right after 2 or 3 days. Any physically active job is completely undoable. Am I crazy or lazy? I never used to struggle with life like this. My gf has opened my eyes to accomodations, but sometimes I worry I'm just lazy.

Ahh these toes, where do I start. Right? Despite the aggravation of CP, sometimes I love my toes. Talking Self care here. I'd really appreciate suggestions on protecting big toes in particular from ulcers, due to foot drop. Podiatrist told me to go bare foot, after minor surgery to remove the nails. I'm loving the barefoot life. What toe woes do you all have? How do you fix them? Soaks, exercises, massage?

Hi all,

I have mild cp in my right side that mainly affects my ankle mobility.

Just wondering if anyone out there has been able to improve their ankle flexibility drastically?

I would love to be able to walk heel to toe one day but I fear my hopes might be too high.

Any exercises you do regularly or tips and tricks to to improve mobility at home would be appreciated

hiya all! this might be directed mainly at people with CP in the global south, cause our sun is more strong :/ i'm back in my home country rn and i spent some time out in the sun today and got sunburned (on an average level) for the first time in a while. the pains in my legs, muscle stiffness and tightness has gotten a bit worse during the day. i remember it happening a bit when i was younger and out in the sun all day, but it definitely feels worse now.

does this happen for everyone else? is it a general, able bodied thing as well?

It occurred to me that I would like to dedicate the rest of my life to participating in studies or experiments in the hopes of finding a cure for CP? Are there an abundance of these sorts of things? Or are they few and far between?

My younger brother 13M has had cerebral palsy since he was born and the right side of his body mostly his arms and legs have limited movement. He's had trouble speaking as a kid but his speech has gotten much better but it’s still not completely understandable sometimes.He used to drool a lot but that doesn't happen now at all. He can walk and even run properly but you can see his right foot is bent at an angle and his balance is a little off. As for his arm, he can pick up things with his hands but he doesn't have proper hold on things and the rest of his arm also has limited movement. He stopped going to a physical therapist about a year ago saying it’s too much work since he also goes to school and has a lot of tests, he never had a day to himself it was always school to doctor everyday. We wanted him to have a break since he seemed tired of his daily life. But since he has stopped physical therapy and exercise he barely moves his right arm/hand and i think his arm has gotten stiff because of it. He can’t do the things he was able to do before (like put on a shirt or pick up a spoon). I’m not in his shoes so I can’t even imagine how it feels to be a kid like this but what I do know is that physical therapy will help him stay consistent and at least improve his daily life but ig since he’s just a kid he wouldn’t understand that. He likes to lay down and watch tv all day and is a lazy kid in general (mostly bcuz my mother coddles him and never lets him raise a finger and does everything for him it wasn’t until us other siblings and the doctors told her to stop doing things for him and let him be independent did she stop coddling him just a little. But my brother is almost completely dependent on her bcuz of this. I mean I’ve seen him lift up a table every day but everytime my mom is in the room he becomes childlike and suddenly he just can’t pick it up anymore. He’s a very emotional kid. Everytime anyone tries to talk to him about his condition or anything related to it he starts crying and it breaks my heart. I really don’t know how to talk to him about his condition without making him cry. I want him to know fully well that cp is not a curable disease but it can only be improved if he works hard on his physical therapy with his doctor. But he just doesn’t want to. Even his doctor said that he was a lazy kid and if the doctor or anyone else is not watching him he’d stop exercising or putting effort into his task. I just don’t know how to motivate him in the sense that he understands that he’s the only one who can help himself. We’ll always be there for him whenever he needs us Ofcourse but this is something that he has to do for himself because we can’t move his hand for him. But idk how to explain this to an emotional child who was just full of hope that he’ll be cured and now is convinced that nothing can help him.

So I’m still living at home but lately I’ve been think about moving out. I’m 25 and I’m wondering if it’s the right time to do, I’ve never been on my own before and a little apprehensive about it. I have cp in my right leg only and I can get around by myself and I can do basic household chores. My parents said that I’ll never be able to live on my own. So I wanted to ask everyone: If y’all moved out, how did you plan your move? Did it take a while to get the money? And how did you overcome the anxiety of living on your own?

hi! okay this might be a bit of a long post but i’m figuring a lot out. i am 21f for reference.

i was diagnosed not long after birth with ‘slight’ CP (now classed as mild) due to brain damage caused by a lacunar stroke and having my two point umbilical cord wrapped around by neck at birth starving me of oxygen. i also was diagnosed at birth with tetralogy of fallots which did not help the oxygen starvation, but was ultimately not too shocking as my dads baby sister died of complications from it when they were younger.

on my medical notes, it shows a little bit disordered the order of how things were told to us vs officially diagnosed, but it is officially as follows 3 dec 2003 (my birthday) - born with ToF 12th may 2004 - VSD as a result of ToF 21st october 2004 - GOFD 4th august 2005 - congenital hypotonia (caused by CP - we believe - some time around here i was also diagnosed with mild CP but i can’t find the date on my paperwork) 3rd december 2007 - lacunar stroke damage confirmed within my left internal capsule into my basal ganglia 20th december 2007 - motor development delay - gross motor delay due to hypotonia and babinski response plus urinary incontinence 23rd august 2011 - ehlers danlos syndrome (was originally told hypermobile type due to lack of resources at the time, my neurosurgeon wants me to have genetic testing as he believes i have kyphoscoliotic type) 26th march 2012 - dystonia (likely to be secondary dystonia), severe limb pain and hypermobility somewhere after that, i was diagnosed with a risk of falls and muscle spasms may 2015 - generalised anxiety and depressive disorder
30th november 2015 - ME/CFS

then january 2019 and november 2019 i underwent planovalgus foot reconstruction with lateral column lengthening on both feet and legs. this went successful and ive had positive results, even though i still suffer with pain and spasms, it has reduced especially in the left side which is stronger than my right.

i started getting back pain in late 2018, and my mother says even when i was a baby she used to point out that my spine wasn’t quite level, but they brushed it off. throughout 2020 however, my spine got a lost worse leaving me bed bound and mostly immobile. i was told i had scoliosis during a visit to the emergency room, then according to my notes after finally getting through the waiting list for the spinal clinic, i was diagnosed with lumbar and thoracolumbar spine kyphoscoliosis with an 46° curve on the right side and 65° kyphosis curve in june 2022.

i also had an mri/ct scan of my head back in may 2021 as i had a stroke scare (luckily i was fine) but they did discover a 7mm cyst also on my left internal capsule. i only learned of this in october 2023. i was also diagnosed earlier this year with chronic spontaneous urticaria but we suspect it might be a mass cell disorder.

with all of that, i have noticed my symptoms of hypotonia and dystonia getting more severe. they believe my spine has curved the way it has due to the muscle spasms and formation due to my dystonia, which is to say because of my mild CP. i’ve never had a lot of resources or support for any of my diagnosis’s, but especially for the mild CP. so now i feel like im 21 and only just learning how much it affects me due to its cause and affect of my other diagnosis. this forum has been very helpful in making me realise that’s my cp!

anyhow, as my spine is quite severely curved, and it has caused me to lose my mobility slowly over the last almost 5 years, (for reference, after my two leg correction surgeries, i was mostly able and although walked slower and sometimes with a limp especially when tired, i was mostly independent - i now rely on crutches or a stick to go out, and need my electric wheelchair for longer distances/days - i am mostly housebound too as the pain and fatigue is so severe.) they wish to do a spinal fusion surgery some time from this upcoming september. i have signed the consent form and gone through all the risks, however since rediscovering, in a way, my CP and the overall affects it has on my body, i am wondering if there’s anything i should be prepared for or should consider before and after the surgery?

i understand it is a huge procedure and the risks, and i also am going into it not wanting to go back to being mobility aid free or mobile. i was told all my life i would be worse in childhood, get a little better in teen years and then get worse again, which has happened word for word. so i dont dream of being abled or having my mobility cured with this surgery, i just want to have my insides back where they’re supposed to be and to be able to sit and even use my mobility aids with more comfort, which my surgeon said he can help at least make a little bit possible.

that being said though, i am scared. my family and friends are excited for me, and i am too, but deep down i am absolutely terrified. i’ve cried a lot over this, even though i dont mind being disabled and have never known any different, the pain and procedures needed do make it hard sometimes. i was just looking to see if anyone has gone through anything similar and if so what your honest experience was like. how bad is the pain? is recovery truly as long and awful as it says? is the results worth the risks? can you feel that your spine is back in the middle? all these questions that i know can’t be answered in a one glove fits all response. but i just think hearing from others, the good and the bad, would at least help me get my head around what’s going to happen in 9 months time.

also, if there’s any tips in the mean time on different aids or support i could be using that would be awesome. as i said, i use a wheelchair and stick, and often use heat pads and blankets due to cold making my spasms worse. i have asked to be referred to an adult specialist clinic, and hopefully some preparation PT, but so far i’ve always just helped myself and pray i get it right lol.

thanks everyone, and sorry for such a long post!

So a random twitch started happening in my arm around a year ago. Was wondering if anyone here has a similar experience? It’s not painful, just a jerk of my arm usually and it’s gone. I’ve told my doc, he doesn’t really know what it could be.

I’m f71. When I was a child we had a big family reunion every summer. I have mild CP. My grandmother had a third grade education. She was intelligent, it’s just that education was not a high priority in her day. I’m saying this to explain that my grandmother was not being cruel, mean, or malicious. She was in her own way trying to be supportive. So every year at the picnic Nana would say loudly to all the Aunties, “that’s my granddaughter over there, she’s crippled you know” . She would call my name and wave her arms. Now every extended family member had her full attention, like over 100 people. Then she would shout to me to “limp for the ladies”. So I walked over to Nana limping and all the old Aunties would pull out money and give me coins. Then my mom and Nana had words, and my mom made me give back the money. Every year this scenario would be repeated. Every year on the way to the picnic we would take bets on when Nana would call me crippled. It didn’t traumatize me. I understood that she was proud of me and that was her way of showing it. Again it was the 1950’s and 1960’s. Politically correct was not a thing.

Hi everyone. I see multiple ppl always posting with what type of CP they have, and because of circumstances, I don’t have my paperwork right now. I’m unsure about what type I have, and wonder if my experience may mirror someone else’s. I’m in my 20s, female. I was told that my CP is mild, and barely showed up on my MRI, however, I’ve always needed a walker for long distances, and since university, have had to use it full time. However, that is getting slightly better with PT. Fine motor issues big time (need help with daily routine) . Severe limp, but no communication or verbal difficulties, and the very very rare involuntary movement.

Does this sound familiar to anyone? Thanks!

Hi everyone, I’m the father to a very sweet 4 year old boy with Spastic Diplegia.

His doctor has said that he is looking like a good candidate for SDR surgery, but before we get to that point we should first try medication, which I am in agreement with.

Something he mentioned was that SDR while an option should be looked at through the lense of “what are the goals we’re looking to accomplish.” Which I agree whole heartedly with. I don’t just think he should get the surgery for the sake of getting the surgery.

So I’m looking to hear about potential experiences from either those living with CP or caregivers.

My understanding is that after rehabilitation he should have a better gait while walking, but I’m wondering if it will also give him more flexibility. His primary issues that affect his day to day life right now, beyond his balance, is difficulty putting on his shoes and pants. For example he doesn’t sit criss cross apple sauce very well.

I know this is something that should be talked about with his doctors/PT and I will be bringing it up, but I figured just for my own sake I’d throw the question out into the ether

Thanks for anyone who replies

Hey guys just wanted to ask what you think 'mild' cp is and whether you have any descriptors or pictures. I've left hemiplegia, I limp when tired and have most usage in my hand. My family have always said im mild. But I experienced bullying/ableism and its really impacted my confidence in my abilities. I wonder if I'm actually that mild? Thankyou in advance

Hey! I have left hemiplegia and for most of my life I've had minor motor tics (things like weird eye movements or flinging my head back). I've always shrugged this off as being related to my cp. Has anyone else experienced tics like this? Or does anyone know if/why cp does this?

I've tried all otc pharmacologic options, lidocaine, tylenol, ibuprofen, Voltaren, etc. I've found no significant relief with any of them, and gabapentin was tried, caused extreme sedation that made me fall, nearly breaking my arm on the way down. My optipns are down to opioids or surgery. I've done lots of research on the butrans patch, it seems like a good option, as I have a baseline pain that's 24/7, rather than short episodes of intense pain, although those do happen. With butrans, I'd have a baseline of pain relief, rather than the peaks and troughs that's common with ir opioids such as percocet. Can yall give me some pointers in how to break this down for me, explain it to my doc without seeming like a druggie, getting it to get high.

I have mild CP. very mild. Meaning most can’t automatically tell. Yet, I’m noticing a bit more issues with it as I’m getting older. I’m in my early 30s.

I can do a variety of poses which I can hold for a while.

However, I’m really struggling with triangle pose and side angle pose. Especially given a left hip injury due to muscle weakness a few years back.

Will I ever be able to master these without complete shaking and falling into myself? My practice tonight was really tough.

I’ve noticed improvement in my legs but my hamstrings are still pretty tight.

Edit: Order of Post

If they do it is mild. They are 17 months and can walk. But they are wildly clumsy.

I want guidance. What do you wish your parents understood about your limits, what do you wish they had done sooner. When do you wish they would have pushed you?

I know he will be ok. I know it is so mild but as I am waiting to talk to a neurologist I wonder what wisdom those who have lived what may be my child’s experience have to say.

They are WAY ahead on every language milestone but every physical milestone has come as late as ‘normal’ allows.

He had a ‘true knot’ at birth and his labor was 36 hours. While I was pushing they kept having to move me all around but his Apgar scores were good.

They had Torticolis (that won’t go awaydispite our dedication) And has had strong hand preference since 11 months. They sit lopsided and have a rounded back often W sits.

They do PT, which I had to really fight for, our state early step program a said they didn’t qualify and I was adamant enough that they barely qualified him. However, I think the PTA is skiddish to make him uncomfortable so he isn’t doing as much work as we could. Mostly just crossing the midline stuff.

My twin sister has Spastic quadriplegia Cerebral Palsy and is cognitively younger than her age. Over the past couple of years, her behavioral issues have slowly gotten worse, but once I left for college, they exploded. She cannot walk but is very verbal. We estimate she is cognitively around 8-9, but it's hard to tell. I know for a fact that she struggles with anxiety, possibly OCD, watching her behaviors and "triggers" ( and the fact that this started happening around the same time I got diagnosed with OCD. Given that we are twins, I wouldn't be surprised).

The main issue is that she screams and fights us over everything. We can only shower, change, or feed her with a fight. Along with that, she has recently got a power wheelchair, which has made these behaviors 10 times worse. We take her out with it every day for around four laps so she can get used to it, but when it's time to come in (We are freezing), she screams and fights to the point neighbors come outside. Along with that, she has started having behavioral issues at school, which has never happened before. I don't know what's happening, and I don't think she knows either.

We are now 18, and I have been trying to find a mental health specialist/ therapist for her, but it's impossible. I know ABA is controversial, but it's the only type of therapy with therapists in my area who can see her in person. I wanted to have her try CBT because It focuses on underlying issues, but I can't find anything. Does anyone have any ideas or recommendations for resources? It has to be in person, which is why it's so hard. I live in Massachusetts.

I love her, but these behaviors have been really bad and frustrating. I don't know what to do, which drives me crazy. I don't know what I'm gonna do if I have to deal with this for the rest of my life, and I don't like that she's struggling with her mental health.

so, today I was at my book club (3 other women) and everything is going great, I'm not overly close with them, but we have fun together. We get a really good discussion out of the book and then we go into the personal things, how we have been doing since last time, Christmas, etc. I tell them about the latest developments in a program I am in for Adults with CP, where they aim to help get us a better life.

The short version is that I have CP Hemiplegia and have over the last few years had a lot of problems with my good arm. I got diagnosed with a chronic tennis and golf elbow and got an operation to fix it. It didn't help and now there is a problem with feeling in my ring finger and I'm always in pain when I use my arm. I had kind of hoped that the program could help me with my arm, but they have finished looking at me physically and have come to the conclusion that it is psychological.

According to the neuropsychologist, it's not that I'm not in pain, but my bad mood amplifies it. She came to this conclusion because I expressed that I was irritated and annoyed at the home care nurses because they can come at any time between 8 and 12 in the morning, and talk to me like I'm a child (even though I'm 29), and sometimes I would like to shower and get dressed without having to entertain people with my life story. On top of that, I can't go out like I used to, because I am not as secure on my legs as I used to be. So the neuropsychologist wants to put me on antidepressants.

I told my book club about this and mentioned that it would be better to somehow fix the problem with either my arm so I wouldn't be bothered by it and then I can be independent like everyone wants me to be.

One of the women said antidepressants sounds like a good idea and then asked me if I don't want to be independent.

I explain of course I do, but it is a little annoying to hear that word be repeated over and over again, like they think they need to remind me that's the goal.

Another woman then said that I should remember that without the home care nurses, I wouldn't be able to function, so I should look at it positively.

I tried to explain the above behavior and how it wasn't like I was rude to the nurses just frustrated at the situation, but she kept insisting that the nurses mean well and that I should find the good in the situation. After going in circles I just said stop because I could feel the anger coming and I didn't want to yell.

The mood was tense, and I wondered if I should leave, but the first woman started talking about how she kind of understood because she's heavily pregnant and everybody around seemed to comment on how big she was, but that she understood that they meant well, so she wasn't angry.

Luckily the meeting was over soon thereafter and I went home.

I just find it so exhausting that when I try to vent or tell people about my problems, they feel the need to tell me to "look at the positive" or "they mean well". When they vent about their problems I don't tell them how to feel.

I also never got to tell them the funny thing the neuropsychologist said.

Hey I'm still looking for a tattoo artist that has experience tattooing people with movement and neurological disabilities (like Cerebral Palsy) around Illinois/North West Indiana. If you have any good info, please let me know. It's not a need, but I'm not having luck on my own. Thanks folks!

So my mom knew I had mild cerebral palsy growing up but my dad’s family couldn’t agree and thought that I needed surgery to fix it so I had Bilateral Femoral Antiverson surgery when I was 14.

Did anyone else have this surgery? Did it “fix” you?

We saw a physical medicine doctor today for my toddler. He's had two MRI's- both normal. He has spasticity and ataxia. I had a complex birth and had an infection during pregnancy. Anyways, we're already doing the whole exome sequencing. She said if that's normal she wants us to do the whole genome sequencing because ataxic cerebral palsy is so rare so she wants to rule out a genetic cause for his symptoms. The results take forever to get. This has been extremely stressful and I just want an answer so we can move forward.

Hey everyone,

I’m looking for advice or shared experiences from others with CP who’ve gone through back surgery. I’ve got some major spinal issues that have been causing pain and making it harder to get around. My doctor is recommending surgery to address things like alignment and pressure on my nerves, and I’m trying to wrap my head around what to expect.

For context, I can walk, but not great—my balance is absolute shit, and I’ve always struggled with it. The thought of surgery is a little overwhelming, especially since recovery sounds like it’ll be rough, and I’m nervous about how it’ll affect my mobility long-term.

If anyone has had similar surgery, I’d love to know:

What kind of surgery you had.

How recovery went.

Did it help with your mobility, pain, or balance?

Anything you wish you’d known beforehand.

Thanks in advance for sharing your experiences—I really appreciate it!

I work with children with severe disabilities (mostly cerebral palsy) and have a couple of very very special children on my caseload who I want to teach how to use a joy stick (so that they can drive their own chairs, operate a PC etc) here’s the catch

• I need an extremely simple game with a very basic UI
• It needs to visually basic/CVI adapted (as many of my children have visual impairments)
• It needs to be basic cause-effect (e.g I push the joystick, something moves, I click a button to pick something up - those sorts of things)

Hoping someone here has some good recommendations for me! Thanks so much in advance <3

This year I was diagnosed with keratoconus and I need to find a cornea specialist to get checked out. My insurance and PCP aren't giving me a reason why I was denied to see an eye doctor in network and so I am interested to know what I can do to be seen by a cornea specialist? I have mild CP, BTW

I'm just 43 and have spastic diplegia. I've been dealing with worsening pelvic/low abdominal pain particularly badly since May. Initially they thought gastric, CTs showed lesions on my colon -- my colonoscopy was clear. So more CTs and an ultrasound didn't show much more conclusive. My gynecologist thinks it might be a spasm has me seeing a pelvic floor PT, and sometimes I fee like it's helping, sometimes not. PT recommended a couple of things, pelvic floor botox and possibly vaginal estrogen. Has anyone else dealt with this or something related? Tried the botox? The estrogen is probably on the table for perimenopause anyway.