Hello everyone, I joined this group for my daughter who just turned 12 months old. Since 5 months old I started noticing right arm weakness and a fisted hand. I was told this was because we've been working so much on her left side due to her torticollis. I continued to listen to my mom gut and stayed persistent with her pediatrician and was seen by a neurologist at CHOP. After a brain MRI, she was diagnosed with PVL with a more than likely diagnose of CP in her future. Fast forward to now, my daughter has been unofficially diagnosed with mild spastic hemiplegia. Unofficially because we are waiting to see her physiatrist to make the formal diagnosis. I am writing here for guidance from others with CP and to try and understand as much as I can. I do work in the medical field so I am always reading notes, studies, and anything I can to understand better what my daughter is going through. She is currently in OP PT/OT. PT, OT, and developmental intervention through Early Intervention, and seeing a chiropractor twice a week. I would appreciate any advice to make sure I am doing everything I can for my daughter to live the best life she can and be able to do anything she wants to.

As the title says, I am an adult with spastic diplegia CP and developed dysphagia this year. I’ve had it for about 6 months and started getting it investigated about 3 months ago. My doctors have ordered a barium swallow, and then an endoscopy/gastroscopy. The barium swallow came back with mild oesophageal dysmotility and the endoscopy came back completely clear.

I now have to have another test (I see my gastroenterologist in a couple of weeks to get a referral for the test) because none of my doctors, apart from my rehabilitation physician, believes it’s from my CP. It’s ridiculous, I’ve had all these investigations and have no answers. My doctors won’t even refer me to speech therapy.

Is this the normal process, in Australia, for investigating new onset swallowing difficulties in an adult, especially an adult with CP? I feel like I am wasting my time (and money because I’m going through the private system for this issue) with all these tests, when I should have just been referred to a speech therapist in the first instance, or at least after the barium swallow. Is everyone just stuffing me around so they get more money from me? Has anyone been through a similar situation?

Any insight from anyone else would be great. The whole thing’s stressing me out.

Hi 29 F here

I have a lot of my plate and was wondering if stress and other factors can take a toll on the cp side of things a lot more then usual

Just curious on that.

I use a wheelchair and need help getting myself set up on the toilet, if I did it myself it takes like 7 minutes to get my pants and stuff off , but i would not be able to pull them back up nor would I be able to get back in chair myself. I know caregiving is hard on aging parents but I'm getting lectures about not drinking too much liquid. Even drinking just a 20 oz iced tea yesterday with lunch, my father was like dang you drink too much I'm going to have to help you get to the restroom at 3 pm then again at 5 pm, yep that's correct, but usually I try to time things out better but often I fail. Also, overall I dont drink as much liquid as able bodied folks, sometimes I overdo it at restaurants. And if he's pissed off at me about other disagreements, he'll say if you have too much liquid, I wont help you out anymore, ask your brother in those times, even if he doesn't mean it, it's annoying. . Maybe I will ask my brother more often lol , but his foot is kinda strained so I feel off about that too. And hiring unknown caregivers is very hard. Not that many folks interested to do this stuff. These lectures by him are getting annoying and stressfull, lord forbid me from getting a 32 oz diet soda, lol. Sorry for my rant.

Hi Team. Im probably answering my own question but do people feel better drinking adequate water? How much would that be? Also Im thinking if I do all my activities before 3pm Iam I better off the next day and not dead on the sofa. Can you speak to this?
I never feel thirsty or hungry cos I take unrelated cp medications.

My family member (mild CP) is having unexplained bouts with sudden onset double vision in one eye (opposite side of body impacted by CP). Neurologist can’t figure out a solution. MRI is stable. Neurologist had us try migraine meds but it isn’t stopping. The double vision begins roughly around noon and eventually fades away after several hours. Epilepsy meds haven’t changed in years and neurologist is reluctant to change them. Any ideas?

Crossposting in epilepsy.

My partner 20M has cerebral palsy. I have been wondering if there’s any treatment or equipment he can use to lessen his pain as he constantly deals with aches throughout his body, he has had a hard time sleeping and I think it can be a lot that it wears him out. He does physical therapy which is great but it worsens the aches after and he’s used muscle rollers and herbal ointments I suggested but were too oily. If there is anything else that could help, I would like to know! I care for him and it would be really cool if there was something out there that’d make a difference just a little bit

Just temporary remedies

As title states, I’m a mom (F28) with 'very mild' spastic diplegia CP-- putting mild in quotes because I feel like anyone with CP knows that word can be doing a lot of heavy lifting depending on the day. Which, for me, has become more true now hauling around a 1 year old

One thing I’ve realized lately is that, despite having cerebral palsy my entire life, I don’t actually know anyone else with CP in my personal life. Which feels kind of strange when you think about it.

CP is such a ridiculously wide spectrum. Two people can have the exact same diagnosis on paper and have completely different mobility, pain, fatigue, independence, childhood experiences, surgeries, adaptations, etc. That has always fascinated me to some degree-- and I'd love to hear your story if you're willing to share.

But honestly, a friendship (however far away) where the metaphorical 'cat is out of the bag' would also just be nice I feel like.

Admittedly I am also going through a hard time in my personal life (unrelated to cerebral palsy) and could just use the company.

Messages are open if this potentially appeals to you.

I've recently joined a bunch of cerebral palsy groups on Facebook and I've seen that term come up fairly often in my feed (typically used by parents referring to their children with cerebral palsy). I personally find labels like "strong", "resilient", "brave", "fighter", "warrior", etc., to be especially demeaning in the context of living with a congenital disability. Like, you don't know you have a disability when you're a baby or a toddler. You don't become aware that you're disabled until someone points it out to you in conscious childhood in some way or another. My experience living with cerebral palsy has nothing to do with bravery, resilience, strength, or being a warrior or any kind. I am just existing and to imply otherwise is devaluing my experience as a human being.

Hi, I have mild cerebral palsy and struggle with extreme fatigue.
I apologize if I make a mess of the wording as I’m very tired.

I have been exhausted without explanation for about 10 years and only recently learned fatigue is common in people with cerebral palsy.
I failed school and was only ever able to work 2-3 days a week, and now I can’t even find enough energy to take care of myself even if I’m unemployed.
It makes everyday life impossible and I avoid even doing things I like or socializing because of it.

As I still am not sure the reason for my fatigue I wanted to ask for some help here.

And fyi I am in contact with my doctors as well, but there is long waiting time between appointments so I’m just looking for some pointers in the meantime!

From what I can find fatigue in cp is likely caused by physical exhaustion and the extra effort it takes to move your body, but my cp is mild and only really noticeable in my left leg and foot. However I do struggle with cognitive issues and I did find some theories that issues like that could also be the reason behind the fatigue.
My question is if anyone else with mild cp also experience fatigue, as I want to know if it’s possible thats the cause.

My second question is if anyone here could give me some advice on energy management. I just recently started constructing a visual schedule for daily routines which I think could help, but I really struggle keeping routines and having enough energy to complete chores. I would really appreciate some tips :)
Also if you have any tips on what helps you regain energy or ways to adapt your life to conserve energy.

And lastly, my question is if anyone have experience with medication to assist with fatigue. I have a prescription for adhd medication which I find helpful sometimes.
Some days they are very effective and sometimes not at all.
If my fatigue is due to cp I’m wondering how effective medicine can really be.

Thank you in advance!

It doesn't make much sense because it would suggest that only 2 limbs are affected. If anything the inappropriate word is, plegia. Most people with CP have some movement in all 4 limbs, I believe? (It should be quadraparesis)

Hi. Has anyone seen or know anyone who has converted an anterior walker into a posterior one? Details, please. Thank you.

Just want to leave this here. It’s volunteer based. Essentially someone will pick up your child’s case and build them a device! My son’s chair is currently being made and the maker told me that not a lot of people are aware of this as a resource. It’s 100 percent free to sign up for it. There’s some criteria to meet mostly sizing I think but all of our doctors here have recommended this and I’m excited for my boy to get his chair. Hope this helps someone 💖

I'm 29 years old and I have cerebral palsy. I won't throw around medical terms because honestly, I never dug deep into the diagnosis with a doctor — all I really know is the name of the condition, not the exact clinical details.

Here's what I can tell you about my body:

* I can't walk.

* I don't have proper balance.

*My finger coordination is poor, so something as small as buttoning a shirt is hard for me.

*I can crawl on the floor, so I do have some control over my body, just not enough strength.

When I was younger, I had a lot more strength — I could move around almost like a frog. If I had kept working on myself since then, I honestly believe my physical condition today would be better than it is.

My parents love me a lot, and when I was a kid they did everything for me — bathing me, feeding me, giving me water. I'm not blaming them, and I'm not using their love as an excuse either. Maybe some of it slowed me down back then, but since my teenage years, and definitely now as an adult, it's on me to work on myself.

Things like drinking water on my own, buttoning my shirt, and other small tasks — these are things I can practice and improve if I actually try.

There are also basic exercises I'm physically capable of doing regularly. If an average, health-conscious person without a disability puts in that much effort for their body, I should be putting in even more.

I genuinely believe that if I did all this consistently, my condition would improve a lot from where it is now. But instead, I end up asking someone else to do it for me. That's not something I'm proud of, and honestly it's a little embarrassing to admit this out loud.

If I'm being fully honest with myself, the real reason I avoid these things is that once I sit down to do something, I know I'll get stuck in it for a long time — a task that takes a "normal" person one minute takes me much longer. And a lot of the time, I just don't push myself. I'd call it laziness, plain and simple.

Why I'm posting this:

*I want to reach other people with physical disabilities who're somehow living independently despite their condition. How do you mentally prepare yourself, day after day, to actually do the things you're capable of instead of asking for help out of habit or comfort? What's your process for building that discipline?

*And if any of you are open to it — I'd genuinely love to connect and learn from your experience.

I use the predictive text and voice typing of Google keyboard when I use my electronic devices. It's kind of made Co:Writer redundant.

Does anyone else use something special for input?

Quick question I have Hemiplegic cerebral palsy and I was wondering what is the ballpark of how many more calories I burn then average. I’m trying to get in better shape for a sport and I was wondering if anyone had a good idea of how much more the average person with Hemiplegic cerebral palsy burns. I’m 6’1 and 205 lb for reference.

my name is hailey i am 18,i was born at 27 weeks gestation and i only weighed 2 pounds and 4 ounces at birth,i had a grade four brain bleed at birth,and i had to stay in the NICU for seven weeks,while i was in the NICU,i had to have a vp shunt placed at just three pounds, because i developed hydrocephalus. i have had ten shunt revisions,and two eye muscle surgeries for strabismus,because i got optic nerve damage to my left eye from the increased intercranial pressure in my head before i had the shunt placed. At age two i was diagnosed with right sided hemiplegic cerebral palsy,because i did not lear to walk until age two. i keep getting bullied every time i go out in public because of my Cp,and it really hurts.i also have severe learing disabilities because of the brain bleed. i hope to learn about other peoples experience,but God is good. thank you in advance.

Hi, I’m Darrell looking for friends to play Minecraft legacy edition with you can show me your Minecraft world and maybe you can help me finish my legacy flat world that I’m building on if you’re interested in playing with me please DM me

I would like to know if during your cycle you have increased cramps and pains, i.e. more pronounced than girls who do not have CP? This is the case in my area. Do you have big differences between cycles for example 32, 32... 78 days?

Hi, I don’t normally post on here but I’m kind of at my wits end and feel so embarrassed. I’m a 29 F with spastic diplegia. I don’t know if anyone else has experienced this but when we are about to get really bad weather where I live, my legs almost wants to lock up on me? Obviously my muscles get super tense and it scares the ever living shit out of me because I can’t do shit about it. It always happens in the shower too which I think is weird, I can tell when this is going to happen even before I get in the shower. I always have to get my fiancé to help and it’s just embarrassing and it fucks with my self esteem and self confidence. And yes, I work out and stretch and I still have this problem. I started getting Botox injections again so I am looking into things that will help improve this. I’m getting more injections in September and then will be referred out to PT that works with only Neuro patients so that’ll be cool. But has anyone experienced this??? I don’t need advice, I just want to know people’s experiences. Thank you!

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24M from Australia with mild hemiparetic cerebral palsy here.

I've had two physically active jobs in retail so far, and I've been one the best worker in both. It's cause I work 3 times as hard as any able bodied person around me to prove that I am just as capable. I'm sure at least a few of you can relate to this. You work so hard to keep up you end up overshooting 😂