I'm hoping to hear from someone who has experience with late diagnosis of CP or who can recommend resources.

I never saw a neurologist as a child, but had lifelong mild abnormal gait, abnormal tone, clumsiness, difficulty with fine motor skills, poor posture, and progressive joint pain. As an adult, I was diagnosed with a functional neurological disorder (gait/tone/balance issues got significantly worse after a viral infection, and developed nonepileptic seizures), but my current neurologist (movement disorder specialist) suspects that the FND is layered on top of a developmental syndrome, possibly mild CP, since some of the movement symptoms have been lifelong. The more I learn about mild CP, the more I suspect that may be correct.

The neurologist says there's no way to know at this point (34 yo) whether or not I have CP, and that it shouldn't affect my treatment. However, I have to imagine that a specialist with more experience with mild adult CP would be able to give a more informed opinion, a heads-up about complications to look out for, and references to therapy approaches that could still help improve my movement.

I'm not sure where look for someone who has experience with undiagnosed mild CP in adults. Any suggestions?

I work at a post high school special needs work skills school. One of our students is 21 with cerebral palsy and has zero cognitive “disabilities”. Her body simply doesn’t relax and she has spasms, tight muscles and nerve damage.

I cannot imagine being that age and having no one to really talk to, besides family. She is so bright and just wants to help people. She is depressed but hides it very well.

She has dreams of dating and getting married, of course. She sees her peers, who are much more affected by a variety of developmental disorders. They are dating, having drama, chasing and flirting with each other. They have no idea what they’re doing, but she has to watch all these young silly kids that have no clue, getting to have all their firsts. Not even appreciating what they have and how fun it must be. Meanwhile, people don’t approach her due to her wheelchair.

Most staff speaks to her like a first grader, which just makes me so angry. We have deep discussions about life, tv shows, work, nails and psychology of people. Sadly, only 3 other people know how awesome she is. All I want her to have is someone else to be brutally honest, a support group for other adults like this.

The other thing is, she says she would rather be with a typical walking man. I have told her to record herself talking out things she’s been through. Or issues she’s going through in her journey.

Recommendations of support groups for women with physical disabilities would be much appreciated!!

Does anyone in Ohio/Indiana/West Virginia/ Kentucky want to be friends? I definitely feel super lonely most of the time! I want to be more social! (22 F, SDR candidate, GMFCS II, Walker, Wheelchair, Crutches, Bilateral AFOs, Spastic Diplegia, Art, Music…)

I’m just curious whether anyone here has had a tendon transfer on their hamstrings in order to allow outward rotation of their feet. I did many years ago (1980) and it was quite difficult with a long recovery, compounded by unintended nerve damage - but it was ultimately effective. Please let me know and anything you can share about your experience would be interesting. Is it still in use, has it been refined, or had it been consigned to the dustbin of medical history? Cheers!

Hi All,

I’d like to learn how to cook properly, rather than just toss ready meals into the microwave/oven/air fryer. I’m wondering what tools or equipment you use to make things easier?

For context my CP affects my left side (it’s weaker), I use a Kaye Walker to get around outside and struggle when standing in the kitchen for long periods.

Any advice greatly appreciated.

Thanks in advance.

AM I GONNA REGRET THIS

can't say exact specifics about my cerebral palsy as I never wanted to ask or really know. It's mild and only really affects my left side, which gives me various difficulties, like pain from walking on my foot, which drags and slows me down. I've always felt it gives me to some degree fatigue from walking, and it's getting pretty bad in how tight it is. now my right foot is starting to get affected and becoming tight too.

doctor/surgeon said it's gonna help, but I really don't know. all the digging I found on this surgery scares me into thinking there's a good chance I'll either get slightly better or very worse off. I'm able to do all the PT and stretching that comes with it, but even then I'm having irrational fears, like losing my ability to properly squat or run or getting pain that I'll have to deal with. I know a lot of it is probably irrational, but I don't know what to do.

Thanks to anyone who replies in general.

Hey ◡̈ with summer coming, I’m wondering what sandals you have found to be the best in terms of support for the foot and ankle

Hi all,

I’m kind of a tech person, and also try to stay as active as possible which makes a great combo for all the fitness trackers on the market today. I’ve had some smart watches (and actually a Garmin I still use for golf) but I’m interested if anyone here uses a more subtle wristband-like tracker that works well for someone like me who takes more falls, etc. Goal is to only remove it when charging, otherwise wear it 24/7. I don’t necessarily need emergency features since I always have my phone on me, I’d just like to keep a better eye on my overall health and sleep score (I’m exhausted some days, which is something I’m trying to work on). I like the look of the Whoop or even the Aura ring but both of them are subscription-based, and I’m not trying to break the bank. Ideally would love to find something under $150. Thanks in advance for any advice!

I’m gonna end up starting to see adult therapist again soon as it’s one of my goals I said from myself again, I walk with canes currently but for my 40 year old body, but is there any exercise I could start with that helps with my balance and my foot drop just for starters in the meantime I walk with canes currently

I'm having a bad day today. I'm feeling down. I'm trying to do everything I can to keep myself in shape, but I'm falling on occasion and I am getting too old to fall. I'm seeing a physiatrist, taking physical therapy, still working full-time to keep my mind active and on top. My husband is getting annoyed with me. Nothing too serious, but I don't think he understands how tired I get. It's funny because he hurt his thumb pretty bad the other day doing yard work and he took a big chunk of skin/flesh out of his thumb. It did look pretty bad, and he wrapped it and took a break from yard work. I kinda chuckled because my leg is like his thumb and I have been dragging it along doing what I have to do with hardly any complaints all my life. I think I would rather have his thumb right now...are you with me? Lol 😆

Is there anyone famous who inspires you to overcome your challenges because they fought through worse? Mine is Abraham Lincoln

So my relationship of six years ended last night and it was amicable somewhat, I didn’t want it to end, but she seemed to have lost feelings out of the blue and I think something was withheld from me. I am not one to go on breaks or sit around for weeks waiting for the person to decide to be with me or not.

Considering my situation, I have CP, fibromyalgia and sleep apnea, (Diplegia) and I felt like this was coming for awhile, she was getting more and more distant and didn’t communicate any issues and would say she’s “fine.”

or when I say amicable it was in the sense that I felt I handled it very maturely, and sensible, I helped her pack her stuff, I didn’t try to fight it, I just let her go, because she was crying so much and I felt if your that tortured about being with me, then go, it’s better for you.

I only really want to be with someone who wants to be with me. Like anybody. It’s just that now I feel a bit lost and confused.

Because, I’m freaking out over the fact I miss her or being in a relationship, I didn’t want the relationship to end, but I didn’t try to keep her, I think there was something withheld from me and I didn’t ask for closure because I knew I wouldn’t get it.

She is entirely done with me, which I accept, but at the same time I’m confused I care but don’t.

and that I’m alone again with my disability which sucks. I don’t own my own home, I live at home with my folks at 32.

I have chronic pain and I fatigue easily, I don’t have a steady job and I work freelance and design applications. (Making a video game) I’ve worked on for a few years now when I can.

It just sucks, I feel like that relationship was the last one I wanted to put effort into. It all just feels so “blah”. But being alone sucks and I know it’s only day two today, but I’m just not looking forward to going through the motions, the months of me being by myself, I have friends but they’re all in relationships and I’m not and I’m third wheel again.

Edit: I also feel like I don’t want to date abled bodied people anymore, they’re too much effort, I have never dated someone else with a disability and oddly it was what I was looking for before I stumbled into my last relationship.

But where do you even begin I swear I’m the only guy with CP on Tinder, and women with CP are just myths there should be dozens of us on both sides.

Hey ◡̈ I’m 25f with Cerebral Palsy (sorry I don’t know what type, however it affects all four limbs, and I’m spastic) I’m ambulatory, don’t use any mobility aids. I work 27.5 hours a week with children and I’m starting to have constant pain in my left ankle. I have an upcoming appointment with my doctor to talk about pain management and I’m just wondering people’s experiences, were you sent to a specialist? Thanks ◡̈

Hi all I was wondering if anybody could give me any advice I am a 28-year-old man who is semi-ambulatory. I’ve had cerebral palsy since birthday I believe and I’m noticing recently because I’ve been more dependent upon my manual chair that when I am up and walking note that I do walk barefoot most of the time because shoes are not my friend. They’re a pain in the ass to get on and off anyway I was wondering if anybody else had the issue of when walking around for a while whether it’s doing chores or whatever it may be, the next day or so it’s almost like I can’t stand at all. I’m in so much pain so much pain. Does anybody have any tips on how I can improve or fix this issue? Yes I know shoes are an option but I’m talking about the shoes are too difficult.

I'm on the verge of giving up. I'm just drifting in life and on the verge of going into care when my mum finds out my savings are gone. She's started asking questions and I know I'll be caught soon.

Even without that, I just don't hold hope of getting any better physcially.

Who would be interested in doing a monthly Zoom meeting to connect with others with CP? I’m seeing a lot of us are lonely and wanting friends. I’m thinking ages 16+. We can do breakout rooms to have smaller groups based on age, severity, etc. Open to any other suggestions for it!

Hi all I am new to this. I am a person that does not talk or write about myself. I am an older person. I only found out that I have cerebral palsy about 7 years ago. That I can’t accept I have it. I use to be overweight and just thought it was that. It is a minor case of the spastic one. How do you mentally deal with it? That is my struggle I hate people looking at me and asking while do you walk like that. Anyway I am on here I am going to try something different. I hate running as my legs are very tight especially my calf’s and hamstrings and going through shoes. Shoes only last me about 6 weeks. I want to learn to run but I will do it early in the morning as their is not many people outside. I am setting myself a goal to start to run. Has anyone got any tips to improve to run better and to hold myself accountable. Thanks.

My friend told me she has never slow danced before and I love ballroom style dancing so I'm trying to figure out what I can do to modify the dance so I can support her while we do it. She has cerebral palsy though I honestly don't know everything about her case as it's not my business unless she decides it is, she uses canes/crutches but can support herself relatively well in very short distances.

My 7 year old son has spastic diplegia CP, is ambulatory with braces. He is somewhere GMFCS 1-2 (more a 2). On a good day with lots of energy, he is able to run around and participate in sports/activities. He fatigues easily, has trouble standing without leaning on something for support. He really has scattered skills. He has previously played rec council sports and due to his issues with motor planning and mobility- there is no other way to say this- he was the worst on the team, but he was having fun. We have since found adaptive sports and he is loving it. He never vocalized to us before that he was the worst on the team, my husband and I just watched with nervous stomaches. My question is… should he just participate in adaptive sports? His adaptive coach expressed concern with him competing against able- bodied peers, but there is part of me that doesn’t want him to miss out on the neighborhood pool swim team and school soccer team at this young age. Thoughts? I want to hear from people with CP and parents of older children. We gave him the choice of CP soccer or school soccer and he chose CP soccer. So maybe just choices?

Hi everyone! Long time lurker, first time poster. I'm a 26 yr old woman with mild hemiplegia. I recently started back up with PT (after over a decade away), and my therapist has suggested dryneedling to help reduce spasticity in my hamstring on my affected leg and bicep on my affected arm. While I think my PT is great, she doesn't have a lot of experience with people with CP, and isn't sure if dryneedling will be beneficial (although she mentioned it's helpful for people with spinal cord injuries). From my own googling, it seems like dryneedling might help me, but curious if anyone here has any experience with the practice. Thanks!

TLDR – I’ve pushed myself as far as I can and I’m still alone with little to live for. Have I hit my glass ceiling?

Evening all long post…,

I’m a 35M from the UK. I grew up having lots of surgery to improve my mobility. As a kid I needed a wheelchair and kept to myself, I was sheltered from the outside world.

Surgery has meant I walk independently now and long distances. Though I still have balance issues, muscle stiffness in my lower body and a clear unsteady gait. I realise in some ways I’m fortunate to be in this position.

At 18 I did my undergraduate degree just 2 years after all my surgery. The stark reality of ableism and realising how society looks at disabilities made me very insecure… I wanted to be as close to perfect as I could be. I feel my perspective has changed a lot as I’ve become older.

I’ve done quite well in some parts of my life. I have a PhD (albeit that in itself was an experience that has left a mental scar). I try to have a healthy diet and do lots of handcycling (it’s a great hobby which I recommend).

I used to work as a meteorologist which is what I always found fascinating as a kid. The cost of living crisis forced my hand though. As a single guy, renting down south I had to live in some dingy houses to save any cash at all. One during lockdown with a difficult housemate who was also taking hard drugs. It wasn’t a good experience. With the chronic shortage of housing down south, I could never buy a house so I moved back up north.

I currently have a job that is ok, not very exciting but it’s low stress and makes use of my coding skills to some extent but it’s a job that lacks genuinely meaningful work, sells myself short and I think it’s a dead end. I’m expendable.

The job and living back with my parents for a while got me enough money to put a deposit down for a house which is a lot cheaper where I currently live. My broker (who was a very nice guy) said that in his 40 years he never came across anyone with CP buying a house and referred to me as a ‘trailblazer’. It made me think, have I hit a glass ceiling?

It’s pretty common for me to get laughed at in the street, usually by teenagers but worse still there are times when I’ve been called a spastic. There have been plenty of other upsetting instances that I’ll spare the details of. I’ve never had a meaningful connection with anyone, never had an emotionally supportive family. Anytime I talk about my disability related struggles, I get branded as ‘negative’.

I’ve never got anywhere with women, aside from an amazing woman I met at uni. We connected over our disabilities but my insecurities pushed her away before we really got anywhere. That’s as good as it has got for me.

I feel I’ve been infantised all my life. Being single forced my hand in my career. When my disability gets me down I have nobody to support me. I’ve resigned myself to no marriage, no kids and loneliness. I don’t mind it at times, I can sit at home and relax without any stress and appreciate lone time to an extent. At 35 I don’t care about being perfect, I just want to enjoy my time and find meaning.

Will I regret my solitude for the rest of my life and live the rest in loneliness? Am I deep down raising a white flag with the drive of my 18 year old self long behind me?

Has anyone ever done an unmedicated child birth? For my first kiddo, I had an epidural, and I really think it slowed my recovery down.

But, one of my biggest concerns of having an unmedicated childbirth is that I will spasm from the pain and it will cause a tear—or I will need a c-section.

Anyone have an experience of an unmedicated childbirth?

So this is interesting & annoying, in my experience, the best way to build foot strength is to long-stride walk (heel strike), on grass. However, you will only be able to walk this way once your feet are sufficiently strong, which could take 4 years (my case).

Im 22, almost 23. I was diagnosed with mild cerebral palsy when i was 4. Ive recieved numerous treatments including botox injections, physio of all forms etc. The thing is, regardless of my research, i was never really kept in the loop with my doctors appointments. I feel like i dont have a good grasp on what cerebral palsy is. I have the most basic dry knowledge and everywhere i look, i feel like im getting a different answer. I know its a spectrum, but google keeps giving me dead ends.

I guess my questions are, what other aspects does cerebral palsy affect? Is there an affect on cognitive abilities as well? If it does could it be mistaken for something else like AdHd or a learning disability? Does it ever get physically worse? Can you ever improve it?

I need suggestions on exercises to help me put pants on without holding onto anything or sitting down. This is one of my therapy goals.

I'm genuinely curious because I've never met anyone else with CP in my situation. I have a very rare allergic reaction to baclofen. I don't remember this, because I was 4 at the time, but according to my mom I was fine on lower doses, but as soon as I took a dose that would actually make a difference for my muscles my heart rate sped up to like 200 bpm and I start getting sick to my stomach. Needless to say, I don't have anything to do with baclofen at all anymore since that happened nearly 20 years ago. So now I take dantrolene. Which has the effect that baclofen was supposed to have, but in a different body system. Anyone else out there like me? Or am I truly a unicorn?

I have it pretty easy with my (mild) cp. But a lot of that is due to modern technology and modern creativity so i wonder how life is for people with cp in 3rd world countries?

I am a 29 year old female with spastic triplegic CP…can’t walk, can’t drive…need help with all of my ADLs but I’m completely cognitively in tact ….I had a great childhood upper middle class for most of it never went without never experienced poverty…my parents loved me, had good jobs and good enough insurance to send me to PT and OT pretty much as soon as I got out of the NICU…I went to a regular school…it was cool, but as we grew people just left me alone for the most part, not that they were outwardly cruel or anything I was just mostly ignored…I think they (my peers)just didn’t know what to do with me so they left me alone…I started eating lunch with my teachers pretty regularly around 5th/6th grade…this would continue when I changed schools in high school as well…I was bullied pretty badly in high school…I was a minority in the student body in almost every way and people were just mean…around this time my anxiety started to show itself…I’ve had trouble finding stability in interpersonal relationships since then…i think it’s because I never had friends growing up that when I became a teenager young adult I promised myself that I would be the best friend there ever was if I was lucky enough to have friends…this promise (and some other stuff) has morphed over the years into crippling anxiety around relationships and self image and self esteem issues…I say all this to vent and say that it’s not fair…I’ve already feel impaired due to my disability and my ocd/adhd/depressed brain makes me feel it even more so…I wish people were more aware of how lifelong/chronic conditions can affect a person’s mental health