Dear Cerebral Palsy Community

Living with cerebral palsy isn’t just about navigating physical challenges – it’s about overcoming misconceptions, advocating for accessibility, and finding strength in resilience. Whether it’s managing symptoms, navigating treatments, or dealing with the emotional toll, we know the journey is as unique as every individual.

At ChroniCare, we’ve done our research to understand the realities of living with cerebral palsy – but we know the most important voices are yours. That’s why we’re reaching out – to listen, learn, and ensure this platform is built to truly reflect the needs of people with cerebral palsy and their loved ones.

What is ChroniCare?
ChroniCare is a completely free platform designed to support people living with chronic conditions like cerebral palsy and their caregivers. It’s a space where you can connect with others who understand the day-to-day challenges, share your experiences, and access practical resources tailored to your needs.

We also want to provide tools for loved ones, empowering them with knowledge and resources to better support you. Whether it’s navigating accessibility needs, managing treatments, or finding ways to balance independence and care, ChroniCare is here to create a supportive community.

What will your feedback be used for?
Your feedback will directly inform how ChroniCare is designed to meet the specific needs of people with cerebral palsy. This is not a commercial or medical study – it’s about building a meaningful, supportive community.

Link to survey:
https://www.surveymonkey.com/r/VYTRCR7

Thank you so much for your time, your voice, and your strength. Together, we can create something that truly makes a difference. 💙

If you have any questions, feel free to reach out to me at oliver@chronicare.io

This might be the dumbest question ever lol but I remember at the cash register when I was working at Carls Jr years ago I couldn’t do the math on the order and he was super rude lol , do y’all think I just suck at math 🤣🤣 or is it CP related I’ve been reading articles & it does show a correlation between poor math skills and CP but idk if those are legit lol 😂

I did graduate college, my reading is ok, but my math is pretty bad like mental math is hard for me

i feel so alone. i know no one with CP who’s is. i wear glasses and my vision is still 20/80. it’s the reason i can’t drive.

Is anyone else’s spasticity so much worse when excited? My neurosurgery NP explained it to me but I can’t for the life of me remember what she said/how she explained it. Went to a college basketball game for my parents alma mater tonight, and even though we lost I was on the edge of my (wheel)chair. It Looks like I’ll be popping some PRN oral baclofen in addition to the pump. Hoping I’ll be good in the AM to do some walking in PT.

Do any ladies here have experience with pregnancy? I know I'm able to get pregnant (I conceived via extremely messed up circumstances when I was still a child myself... but didn't carry to term). But now my husband wants to get me pregnant and im excited but also scared because what will pregnancy and childbirth be like with spastic quadriplegia?

I'm curious to hear what has helped you the most, from medications to heating pads to adaptive kitchen equipment. I have mild CP that is becoming more problematic as I age, so I'm looking for ways to better manage my symptoms, especially given the lack of knowledge from healthcare providers.

Hi Everyone, I have a daughter with CP. She is unable to walk and if affects her right arm. Especially her find motor in her right hand. She loves playing games but I have run out of ideas and new games. She is 5 years old and in the what's next phase. Does anyone have any ideas of games we can play at home. Especially ones where she is able to crawl around. Thanks in advance.

My 9yo son has mild spastic hemiplegic cerebral palsy, affecting his right arm and hand, as well as speech, and general motor control. He is also autistic, adhd, and recently had a massive surgery on his foot for clubfoot.

He has a wind reflex that makes it difficult to impossible to breathe in the wind. His school has accommodated this for the past five years by allowing him to remain indoors when he finds it too windy outside. We have done our best to protect him from the wind by providing a balaclava and even ski goggles once there is snow.

This year, at parent teacher meetings, they said he is exaggerating. That they've never seen it, and he only wants to stay inside with adults. We pushed back and said no. It's not exaggerating. It's real. They insisted on a medical form from his dr for accommodation to continue. We did that, and also sent a video of him in the wind and unable to breathe. We were told when it's too windy he can remain inside.

Today it was windy. At drop off he couldn't breathe, and sat down in line and just covered his face to protect himself. Then someone yelled at him for not coming inside at the bell quickly enough.

I decided to watch him during his recess time today. Two recesses of twenty minutes and my kid didn't move except to hide his face. Not one playground supervisor came to check on him. Not once. Even when his face was pressed against the bricks to escape the wind. So forty minutes of a six hour day. Not moving. Nothing.

They insisted he be outside for him to "socialize". This was anything but. In fact he was in desperate need of attention and assistance. He told me that he said it was too windy to go out, and he was IGNORED.

I met with the principal but I have zero faith that this will change anything. I played my hand and told him I have video of my kid standing still for two recesses. He promised to make it better, but who knows.

I need advice from any parents here on what to do. I did call the superintendent and left a message.

What are my child's rights in Ontario when it comes to education and accessibility??? How can we insist that he be supervised and kept safe?

I'm gutted and so sad. It's not ok.

I’m pretty sure my baby has a form of spastic hemiplegia, we don’t know how how severe it is because the doctors are holding off with the diagnosis for now saying it’s too early to tell us anything. We do know that she had suffered grade 4 IVH at birth which affects motor function on the right side of her body. She does indeed show a clear preference for both her left hand and leg (for example she’s only grabbing her left foot with her left hand but not the other way around). She’s 8 months corrected age now (she was born extremely premature) and she really wants to crawl and finds it frustrating she’s so far unable to (she ends up going a bit like a corkscrew). She used to have regular physiotherapy but for some reason her physiotherapist went MIA last couple of months and I don’t know who to ask for help (we live in the UK). Are there any specific resources that would be helpful for us to study to help her - things like stretches or exercises, or do we need to just let her figure it out alone and be there to cheer and comfort her while she tries?

Last night I posted my list of concerns I had for my new PCP.

Today he went through them one by one with me and wrote scripts for PT, physiatrist, lower extremity braces, pelvic floor therapy, and a custom wheelchair!

He does not want to do Botox or surgery. Increase baclofen to multiple times a day to help with spasticity.

I felt so heard and seen!

Has anyone had bunion surgery? If so was it worthwhile? I have spastic diplegic CP. It’s been recommended on a podiatry level but between care and how long it will last including permanent pain. Im not confident. It’s come to the point I can’t find shoes anymore. If it could last 10-15 years I would take the risk.

I know it’s hard to know without being me. And maybe it’s stupid to ask. But I’m wondering if there’s any areas to cover you can think of when going to a brand new PCP for referrals and ideally a wheelchair. Thoughts?

It seems I have issues everyday. Getting annoying. Gets you sick more and can’t really sleep either I researched for some reason that cp and mucus are linked to make more of it? Guess should also ask if that is true

We just received a new customized prescription push chair and car seat for our also tween. We are extremely lucky to have health insurance that covered them. So, I don't know the retail value off the top of my head.

We have never had prescriptions or specialized mobility equipment like this before. (We just got by with mainstream car seats, push chair rentals or wheelchairs for longer distances or just didn't go/do.) We also have new-ish AFOs and a knee brace. I hadn't thought about insurance for them on our auto or home before.

Should specifically have these items individually listed and insured with our Auto &/or home insurance?? What have you done to get mobility devices covered in situations or theft etc? (Not overly worried but car, smash and grabs, thefts & joyrides aren't uncommon in our city.)

(I doubt we could afford to replace them if they got stolen or damaged in an accident car or house.)

Hello, I have recently started commenting in other threads, but I figured now is a good time to introduce myself.

I am random_anonymous_guy, and I am on the verge of having many of my life's questions finally answered.

I have never really been a particularly physically active person, but I like to hike. Not just easy hikes, but in mountainous terrain, hiking over scree. In recent years, I started finding hiking becoming more difficult, and I simply assumed it was a result of getting older (well, maybe that's true, but I was assuming normal aging). Hiking had been the last hobby that I had not given up on as a way to try to keep physically active. Three years ago, I started hiking with poles to help with balance and to help push myself uphill.

I am told I walked on time, and I have had an apparently normal gait for much of my life. But... I have always had motor coordination difficulties, such as trouble learning how to ride a bike, tie my shoes, learn to roller blade (never did), hold a pencil correctly, throw a bowling ball correctly (much to the annoyance of my brother), drive a stick shift, or do a cartwheel (I was shamed by my third grade PE teacher for this, who then proceeded to have a classmate, who has CP, demonstrate how it is done). My handwriting has never been great, and in fact, I found it really difficult to even grasp a pencil early in the mornings when I made the poor choice of waiting until the morning before school to finish up homework. My difficulties with handwriting no doubt had an adverse impact on my academic performance (which I am sure my autism did too). My motor coordination difficulties generally made me slower than my peers in occupational settings, which generally resulted in some troubling performance reviews.

I first noticed when I was 12 that I had pretty tight hamstrings when I began seventh grade PE, only being able to reach my knees. Not understanding why this was, I somehow managed to get them stretched out during that school year and was eventually able to reach my toes. What I do remember from that is that it was easier to stretch on the left than on the right. I started junior high school only being able to do a mile in 15 minutes. I could not sustain a jog; I walked much of the time. By the end of junior, I was able to run an entire mile in just half that time. Unfortunately, naïve teenage me did not keep up with stretching, I eventually lost that flexibility.

My first year in graduate school, I started experiencing bunionette pain. Shortly after that, I discovered I had a slight tendency to toe walk when walking barefoot. Because I could still heel-toe walk if I put some concentration into it, I had assumed this was just a benign autism sensory preference, just as I had assumed my motor coordination difficulties were also due to my autism. To be honest, I am not really sure how long this habit had been going on, as I had gradually been developing an aversion to walking around barefoot.

I can't really put my finger on when I first noticed it, but I had discovered I had an odd reflex in my ankles. I would lift my foot off the gas quickly, and would find my ankle would lightly bounce up and down. Again, I dismissed this as benign.

I have also had problems with my weight and in keeping a regular exercise routine, as I keep finding myself too fatigued to keep going. I have lost weight in the past (down to about 170 pounds in graduate school after reaching 215 as an undergrad), but it would always come back, and in more recent years, I started finding it even more difficult to lose weight. I am now at 240.

Just a year ago, I started noticing I would wake up with more noticeably tight calf muscles. Again, I shrugged it off as getting older. By this time, my hamstring flexibility was pretty much back to where it was when I started seventh grade, possible even tighter. I realized my stride was short as I noticed I had to take a lot more steps just to keep up with my nephew who is of similar height.

By this time, I already knew that spastic cerebral palsy predisposes one to have tight muscles, as that eventually reconnected with that childhood classmate with CP in college, and during that time, she had described how her CP (spastic diplegia) affected her.

Unfortunately, I did not connect the dots.

I started suffering an escalation of symptoms in late August. First, I had realized I could no longer make heel contact with the ground when walking barefoot, but for some odd reason, I could still stand flat footed. I discovered my ankle dorsiflexion range of motion was quite limited. Up until this point, I did not really pay attention to my calf flexibility when I was younger, but I finally realized why hiking uphill had become so painfully slow. At that time, I still could walk normally with shoes on. Since I had an aversion to walking barefoot, I honestly do not know how long this had been going on.

I knew it was not normal, so I knew I had to see a doctor about it at some point, but I did not realize the gravity of the situation yet. Then things got worse a few weeks later. The toe walking became more forceful at times, and my gait started becoming uncomfortably familiar. Familiar in that it really started reminding me of that classmate/friend. Those bouncing reflexes in my ankles also became more pronounced. I finally realized that my toe walking was most definitely not an autism sensory preference, and that the motor coordination difficulties I have may very well not be due to autism either.

I finally saw a neurologist earlier this month who assessed me and has referred me to get some MRIs done on the suspicion I have gone through life with mild spastic diplegia. He also identified those reflexes in my ankles as clonus, which I now understand is a sign of upper motor neuron damage. I never realized CP could present this way. So mild it practically goes unnoticed, only to begin having a more obvious impact in middle age. I still wake up walking on my toes, but thankfully, I have found a heating and stretching routine that has been helping me get back on my heels. Just the first time doing it, I finally got my heels back on the ground when walking barefoot, and I felt like I was over 50 pounds lighter. I was honestly astonished at how tight my legs had become. However, the effects are temporary, and sometimes, the toe walking returns by the time I return home from work.

Interestingly enough, I still have more tightness on my right than on my left. I can especially feel this difference when lying on my back with feet flat against the door. I feel tightness in my calves and hamstrings doing this, and with definitely more tightness on the right.

In my further reading about spastic diplegia, I had also learned that it predisposes one to stand and walk with a narrow base due to its effect on hip adductor muscles. This brought back a memory of a neighbor kid pointing out to me that I always stood with my feet together. Sure enough, when I found some photo albums my parents had kept (back in those days, we used FILM), most of the pictures that show me standing show my feet practically glued together.

I still have a lot of flexibility to get back, but I hope I can make it happen. My rehabilitation goal is to return to hiking, climb up Cascade Pass in the North Cascades of Washington with some photography gear, and shoot a panorama over Doubtful Lake. I also hope that rehabilitation will also enable me to finally reach my weight loss goal.

I also need to get MRIs done (I have to wait until January), so for now, my diagnosis is provisional. I still do not have any treatment plan set up, but I hope to get one soon, and I hope at most, all I will need will be PT and braces.

I am very much interested in connecting with others whose cases were so mild, they were diagnosed well after early childhood. If you have a late diagnosis, I would be interested in hearing from you about what happened that ultimately led you to being diagnosed. I would also love to hear about what helps, as while I feel hopeful that my self-care has stopped things from getting worse, I am sure there are those of you who have the experience to help me through this.

title. i just wanna know if im the only person who uses those

I (36F) have been married for the past nine years. I have a more mild case of cerebral palsy. I walk unassisted, but I recently got a wheelchair to use in case I get tired. My CP is spastic hemiplegia on my left side. My leg is more affected than my arm, but both are weaker.

I haven’t become a parent because I had a lot of trauma to work on. I have had lifelong challenges with depression and anxiety. I was also lost for a long time from a career perspective. I couldn’t imagine having a child when I had so many issues of my own.

Now, I have weekly appointments with a therapist and dietitian. (I have an eating disorder history.) I found the right medication and have been doing pretty well mentally. I recently got diagnosed with two conditions that might be causing some of my fatigue. I’m excited to see if treatment helps me feel better. I also just finished graduate school and did a complete career change. Long story long, I feel more capable of parenthood than I ever have, though I don’t know if I’ll be able to get pregnant. We have never tried.

I have two questions for parents with CP: -Was pregnancy super hard on your body? Did you have complications? -I am concerned about carrying/holding a baby because I’m kind of clumsy. My left arm just can’t hold as much weight. Any tips about this? I’m worried I wouldn’t be able to carry a child.

Welp. I think I pushed myself a bit too hard and am feeling it after my first go at it. I’m posting for future people who google and for just a bit of insight because I think after googling what I’m experiencing is on brand.

40 years old. Very mild CP although if you know, you know. Botox has only ever come up in discussion once until about a month ago and the last time I dismissed it as silly. I’d describe myself as having right hemiplegia but my neurologist had a side comment that I look tight on my left side too. She stopped herself in offering feedback and I wish she hadn’t stopped because I really haven’t ever heard what a professional thinks.

Anyway. Botox was brought up by my physical therapist about a month ago and I am following with a new neurologist due to seizures related to an arachnoid cyst in my brain. (The cause of all this). I set up an appointment and she checked out my leg and agreed so I had my first set of injections on Thursday.

I got three shots in my gastrocnemius, three in my posterior tib, and one in the bottom of my foot (after I said I was curling my toes a lot).

I took time off from my running (I’m training for a marathon). Saturday I ran 13 miles and today I got to 4.7 miles. My ankle started to REALLY hurt so I decided to slow down and shorten the run a bit and not get to 5. (Oh well, whatever). Saturday’s run was great. I actually felt a bit more power in getting up a few places that I usually struggle with and my pace was faster. Today was brutal with my ankle hurting and my pace being average.

When I got home I was feeling awful. It feels flu/allergy/covid (all updated on vaccines) -ish. Sore throat, runny nose, tired.

I also think I had a brief focal seizure where things were just really confusing earlier this evening.

So, my question is, especially for adults: did you all get sick like that? And did you feel sore like where you were almost limping? Or is that me being a dummy and maybe jumping back into my activity of choice too quickly?

I know I will expect some weakness and booked myself asap with my pt (I thought I was booked for Tuesday but I’m not so I put myself on their waitlist and scheduled for early December). I also know not to see results for a few weeks.

This is so embarrassing that I started a new Reddit account just to ask this. Please don't judge me! What do you do when your body spasms and contorts so badly that it's hard for your husband to spread your legs? Are there braces or rerestraints that can help him spread my legs apart and keep them apart so he can penetrate me missionary style?

Also, is there anything I can do to loosen up a little "down there " or hurt a little less when he's inside me? He says he loves how tight I am, it feels every time like I'm a virgin and i guess when i spasm when he's inside me it feels real good to him. I don't want to take that feeling of taking my virginity away from him, but I don't want to be sobbing in pain every time either.

Any advice?

self care rituals...? I just got back into getting my body hair waxed & I want to get a pedicure, any tips? tell me about your self care routines. 🙈❤️

Palsy We are renovating our bathroom soon, and want to make it as accessible for our 2 year old son with Cerebral Palsy - for now and as he grows - so would love any advice on how to achieve this. Any tips on things he might find helpful and additions/modifications we shouldn't forget about eg are certain shaped toilets preferred, where are grab bars most useful, is there an ideal configuration and layout, ideas on reaching sink while he's still small but not able to step safely onto a stool, where to keep key toiletries. No tip is too little! Any little thing that might make bathroom life as smooth and easy as possible that we can consider and factor into the renovation.

For context - he is able to pull to stand and cruise currently and is unlikely to need a wheelchair within the home but will possibly need walking aids (currently uses a little Kaye walker). He loves bathtime, so ideally would like to keep a bath rather than a wet room/shower seat considering his young age but would like to think now about ways for him getting in/out bath somewhat independently when he's a bit older.

TIA

I have cerebral palsy but also severe anxiety and anorexia. I'm on diazepam (2mg 3 times a day) and baclofen (20mg 3 times a day) as well as quetiapine and other stuff for my MH, (also have bipolar and depression). Because of the combination of CP and MH difficulties, my muscle tension is very severe and debilitating, often to the point that I cannot walk at all, even though, CP wise I am ambulatory. It has worsened a lot in the last year. In part due to age (I'm 33 now not 18), but also general stressors in life and pretty severe situations regarding my MH (serious suicide attempts, malnutrition due to anorexia, and issues caused by over exercising, which is an eating disorder behaviour). I am now at my wits end. I have no quality of life, and no doctors seem to want to help me. I had many surgeries as a child, and am waiting on a referral to orthopaedics for more as an adult, but my daily quality of life is non existent. I take magnesium every day, have tried CBD but nothing seems to work. Do I just need a higher dose of diazepam/ baclofen, or is there anything else I can try? At this point I honestly would rather be dead.

I have triplegic CP (affects both legs and left arm) with spasticity and dystonia, and I've noticed that my dystonia really kicks in when I try to run (or honestly any time I'm concentrating/trying hard to do something). My left arm and hand start to spasm and get really tense and kind of stuck in one position and the more I try to relax it the worse it gets. If I stop it will calm down, but that kind of defeats the point of trying to exercise at all.

Anyone else with dystonia that especially kicks in when exercising? Has anything helped?

Hi everyone. I'm new to this sub and it makes me quite emotional, and the same time inspired by how everyone is living their daily lives despite the discomfort that we all experience.

I'm 25 years old with spastic diplegia. A very noticeable not normal (?) gait but it somehow gets masked whenever I'm using high-heeled shoes. Tho my parents rarely allow me to use one. I like being fashionable but still, it's making me conscious whenever people see me walk in a not normal way. I can walk without any assistance and for long distance as well. But sometimes, if I walk too much, I get an agonizing hip pain.

I know that it's a neurological type of disability but I sometimes get offended when the doctors learn that I have CP and I get asked if I was even able to finish elementary. I'd be like, "I'm a licensed accountant" lol

Lately, I was advised to wear foot braces which actually helps a lot with the pain and my sister told me that I'm walking better even without it. I only use it when I'm on a treadmill. Couldn't use it that much outside because I'm mostly walking alone and the braces actually limit my mobility.

Welp, anyway, sorry if this is a boring read. I just want to share something.

Live beautifully, everyone 😘

It’s weird because of my cp my toenails are fucked up and my toenails hurt , anybody have this problem lol

Hey, I've been reluctant to post this because of some of the disapproving comments I might get but here we go.

So I'm a trans man planning to go on testosterone soon and I just wanted to ask some on the guys out there with cp how much thier muscles tightened when they went through puberty and how they dealt with it?

If you disapprove with this kind of thing don't bother commenting just scroll.

Thanks.

Hi. I have epilepsy, pnes, depression, PTSD, anxiety, gerd, mentally delayed, mixed cp, low vision, no peripherals, breathing issues, double vision, and get seriously bad migraines. I am in a poly relationship with 3 people. They are super nice. One of them recently told me how I could make it easier on myself if I got the parking pass, which has always been a thought. But I don't feel like I deserve it. Cause you know people are worse out there than me. It is the same reason why I am only now reapplying for ssdi. But I just want to work til I can't anymore. I used to be on SSI when I was a child, ended up in foster care. SSI stopped. So now I'm trying to get it started again. But I'm not sure if it is even the right call. Cause I'm worried that I don't deserve it. And my other partner treats me like he would an able bodied person, but sometimes it hard. Cause he is very stubborn he doesn't get that I don't want my disabilities but I have to live with them. So basically wanting to do everything while not being able to. He keeps asking me what the difference is. The third partner is new, I've been with them since last month. They help me in the way that they know how. But they are trying there best. they all try to help it just feels like they don't get it. And I have not great parents, they've done a lot of drugs, they got arrested. This is the short version. But my birth mom knows my medical history. So I reached out to her. My partners want me to cut contact, which is fair. But I don't know how else to explain that I want to be understood. Not just by them, but I want my parents to understand too. It is just hard being raised my grandparents who believe even though I'm disabled I could work a full time job, which makes me want to work a full time job even though I know it isn't good for me. Right now I'm working less than 20 hours a week and hoping to get back on ssdi. Which would help with working and bills and such. My partner keeps making the joke that I'm the poster child for disability help, and parking pass. But I can't help but giggle at it. Cause I've never really thought I deserve it. Also sorry about how long this post is.

Hi all! Sorry if I'm not welcome here as I do not have CP. I'm just looking for recommendations for things that have helped/inspired you all. My brother-in-law has CP, and I want to try to find a way to inspire him to be more independent. I think the main thing is that his Mom has always told him he's disabled and that he can't do this or can't do that. I think it is cruel ignorance on her part. I think he could do anything if he wanted to, and that she has been holding him back his whole life. When someone is constantly saying how incapable you are, I think that makes you become incapable. Are there any resources outside of therapy that have empowered any of you? I don't think he has ever been part of a community that understands what he is going through, and I certainly can't pretend that I do, so any help would greatly appreciated.

Hi, I am looking for a raised toilet seat that is VERY sturdy for a friend. Does anyone have recommendations?

Hi guys! I'm applying for some new programs & I'm getting really overwhelmed. If anyone has any advice it would be greatly appreciated. I'm out of crossroads between trying to get vocational resources and trying to get on disability instead.

I have an upcoming SSI interview and an upcoming SMI evaluation. Once those are done I'm planning on applying for SSDI. I've never done this before and don't know how to prepare or what I can do to make it more successful.

I had an autism evaluation recently and it didn't go well. The notes make it sound like the person didn't even believe me. My Caseworker thinks I get overwhelmed & anxious. She warned me to just be myself, but that's what I thought I was doing already! 😵‍💫

With my CP getting worse as I age ( & even worse in the cold,) not having to work full time would be a huge blessing. It seems like my days are all doctor's appointments & phonecalls. I know it's a blessing, but I need the time & more knowledge. Any advice would be greatly appreciated, even it's if it's as simple as do say this or don't say that. I don't want to say anything at any of the meetings that would disqualify me. Thank you guys. 💜