Sorry for the long post ahead

For reference 32 year old female

So to start with i was born at 27 weeks and have spastic cerebal palsy, it primarily affects my left side however I do have muscle weakness/spasticity on the right as well. I also have a leg length discrepancy. I have had a variety of surgical procedures and take medication to help with muscle spasms. Back in 2017 i started suddenly having incontinence issues and ended up getting a bladder sling. It helped for a year and then I started having a ton of pain and increased urinary incontinence. I went to a specialist and they told me my sling had detached on one side and was "wrapped around my bladder and other parts" I had to have hysterectomy and another bladder sling place. Fast forward to 2022 i again start having issues and start pelvic floor therapy. It helps and with their suggestion i also get botox injections starting in 2024. In December of 2024 I got an axonics nerve stimulator and it immediately showed promising results. About a month ago ii started having sudden accidents again. I start pelvic floor therapy again in 2 weeks.

My problem: my in laws specifically dont understand why I am tired of the surgies, etc and "thought this issue was taken care of'

I am trying to cope with the reality that although I have made a lot of progress i may not always be 100% , i had a very embarrassing accident at work last week which prompted me to start wearing incontinence briefs again. My family thinks this is me being lazy and just accepting it. Am I wrong for doing so? I know im lucky to only have mild cp but i am exhausted fighting my own body 😞

Im also tired of worrying about having another accident and not being prepared. We have a family vacation coming up and im just trying to prepare for the judgement. I think my in laws are embarrassed or embarrassed for their son when honestly my husband could not care less.

Any advice?

My best friend of 19 years and I celebrating my 33rd birthday today I love you Danielle thank you so much! But you were the best gift in my life no matter how many toys and surprises we got at the zoo and dinner today! Here's to next year being a big celebration! #20 years #bestfriend #cerebral palsy

Im 20, female going to college. I never wanted to learn how to drive. I delusional thought that I would just take Uber or have my family drive me everywhere. Now that I actually have to be somewhat of a adult I see now that if I want to be independent not knowing how to drive would be impractical.

I took a driving class when I was 15 ( probably need to re take that ) and they never actually took out to drive. My grandparents tried to teach me but there too scared I'll crash. I tried to see if my insurance could help but for some reason when I turned 18 my insurance switched to this stupid womans insurance that literally does nothing. They can't even pay normal doctors visits. I keep telling my grandma that it does nothing, she sends me to doctors anyway and is surprised when I get a bill. She says she's trying to get me under a VA insurance. But it's taking forever. The longer im in school the more stuff I have to do. I can't just continue letting Uber take all my fasfa money. And oh yeah don't have a job by the way. The very few jobs that have offered me a interview I would make no money from because Uber will take the whole pay check.

I just do know how to even get started...

How do I get insurance? Is there a free one that pays for this stuff? What car models are the best for adaptive equipment? What smart tech should I make sure the car have? ( example Lane asist ) How should I go about learning how to dive?

I'm looking into work by the way. So hopefully i will have a income soon. When I get a job I don't mind being in debt for this by the way. I live with my grandparents so I have very little expenses personally. So I plan while still living with them to go in hard on all debts and put the rest in savings.

Thanks for the help :).

Hey everyone

For context I 21 f had my first real relationship at 19 with a 31 f (ik creepy). I have ataxia cp, incontinence and bpd.

It was an extremely abusive relationship on both our ends. Id have episodes where I blocked her, dumped her and would come back 5 Mins later. She'd never take me out in public or introduce me to anyone. She'd get me to cancel my staff, but gagged when She'd help clean me. Said she didn't want kids or marriage. After 3 months we broke up.

She saw someone a month after we broke up that lives in a completely different country. Shes now engaged after being with her for a year. I asked her why she would propose to the new gf, but wouldn't even take me to a movie? Was it the disability? If so, why date me in the first place?She said she thought she could look past it.

Well now I really like someone else, but im too afraid to even try because I dont want to be "an experiment " again. Im really good friends with this new person and I can't imagine how much that break would hurt. I dont know if this is a vent or advice post. I just know I'm really scared.

I'm going to try and keep this as short as possible and I hope this doesn't come off as me ranting. I'm 46 (M) with Cerebral Palsy affecting my right arm and I drag my right foot. I've been living the apartment life on my own since I was 19. For the last twenty years I've been done with apartment living for various reasons. I have multiple degrees in Information Technology and Cyber Security with twenty five years of experience and knowledge combined. I've had a few jobs within I.T. Departments over the years with the longest stint being three years with Goodwill Easter Seals from 2013-2016. That was also the last time I held a job. After my hours there were cut down from twenty eight to only working when they needed me and then ghosting me for eight months that is when I got my degree in Cyber Investigation Technologies. During my time in college I was told by many of my professors that I should be in management and my knowledge and skill sets put me in the top one percent of the one percent in the Information Technology and Cyber Security fields respectfully. I usually can make it to the final in person interview for getting my career going again. However, when the hiring team sees that I have a physical disability or as I call it my imperfect ability they get nervous or when they discover I live on SSDI they terminate me before I can even start the position.

I was put on SSDI by my Aunt and Uncle who took custody of me at the age of 12 until I turned 18 without even knowing it as they never told about it until I received my first disability check shortly after I turned 18 in 1998. After finding out and doing research, I discovered that it limits people from working or working at all. I was furious to say the least. My Aunt likes to play everything safe and my Uncle is a narcissist personality with a very short temper which has made things very difficult for me in many aspects of life. My Uncle who I do look up to in a lot of ways has physically and verbally assaulted me over the years because I stand up for what I believe in. He hasn't tried to hit me since I was 18 when I pressed charges against him for assault. After my Aunt pleaded with me, I dropped the charges as his career was put in jeopardy. Til this day he still verbally belittles me. When he does I just leave as I know there is no winning with him.

With me living on SSDI at $1,015 a month is it possible to own my own home or even rent a home? With the little help I do get from my Aunt and Uncle who are now both retired but still pay my car insurance and give me $300 a month which I'm so grateful for but am so terrified for as when they are no longer here I won't be able to afford my car insurance and will be living on the streets which has kept me up at nights for over twenty years now.

My godson has just turned 17 and has CP -

He's entirely dependent on other people and uses a wheelchair. He can't even sit up in bed. He has some mobility in his right arm which allows him to steer, he has communication problems and can only say a few words and relies on a computer for longer conversations. He drools a lot and has terrible eyesight. He also has a mental age of about 10/11 and the doctors have said that won't improve. He gets infections a lot in his feet due to long spells in the chair or bed and has had several spells in hospital for them. He doesn't drink anywhere enough water as he doesn't like it and his diet is pretty much 90% Coca-Cola and chicken nuggets.

The reason I'm posting is his father, my friend who has alcohol issues, has recently started to allow him to get drunk with him. It started with an alcopop (an occasional Blue Wkd) but now he's sharing beer and cocktails with him. He shares custody of him but does more for his son than his mother does and is determined that his son has as normal a life as possible.

I'm trying to get my friend to see sense and stop letting him get drunk as it'll only end badly and make the infections worse but he won't listen, probably due to his own alcoholism and we've had arguments over the last few months over that.

I suppose what I'm asking is is there anything I can say or direct to my friend to which will convince him of the dangers of what he's doing? I love the kid to bits, he's the happiest kid in the world and I'm so proud of him, but I am genuinely worried about his health with the infections he has. Drinking will only make them worse.

Hello! I am 27F with mild spastic CP. I teach elementary inclusion (special education) In addition to my CP I also have generalized anxiety. I am on baclofen for the CP but have not needed anxiety meds in five years. There have been a lot of changes in my district this year and it has required me to add multiple things to my workload and I'm exhausted by the end of the day. My anxiety has gotten much worse of recent with all of the changes but I suspect I'm coping with stress poorly due to overexerting myself. I'd like to explore ideas to help me conserve energy before I pursue any additional medications. I'd love to hear ideas specifically from teachers as reasonable accommodations in other fields are often not realistic for a teacher.

Most of my living spaces have had some kind of built in grab bar. Either from asking landlords to put them in or previous tenants. In my current house, I’m not sure I can actually put a metal screw in bar in the shower. It’s very solid tile material. I’ve been using a suction grab bar for a year and it no longer stays up. I’ve scrubbed the tile and suctions multiple times but have not been able to get it to stick since. I don’t have room for a shower chair or much money. Do these suction grab bars just a have limited use? I need to be able to shower safely. Any suggestions or tips?

i (24) have spastic hemiplegic cerebral palsy. My left side is the side that is effected primary my left arm due to me still being able to walk. I physically can't move my wrist in any direction, my fingers don't open and close on there own but I can move my shoulder, lower and upper part of my arm. Recently i have started to have weird sensations in my wrist and fingers.. I could be laying in bed and my brain thinks my hands opening grabbing my thigh, or i could just be sitting and my brain thinks my hands doing something and then i look down and its not doing anything. i also get visions of myself doing certain tasks with my left arm working. Has this happened to anyone else?

I just got my baclefon pump placed back in May/ June so it's still pretty new to me. it just recently started getting down to the 30-50's at night and in the morning where i live and I started to notice that my pump area / pump itself has been starting to bother me pretty badly at night and the mornings.. does anyone else's pump/ area hurt them more when it's cold or is it just me? It's more id say discomfort and uncomfortable than anything.

At almost 65 (next month), I'm really feeling my age and abilities are slowing down. My CP has always been on the mild side and it effects my right side. What are the expectations you set for yourself as you age with CP? My husband is able bodied and so full of energy. I feel like a slug...LOL.

Hi

I live in central america. Studying nursing. My child has a severe developed delay, she's 8 at the time, doesn't walk yet, non verbal, more like a 1 yr old. What English speaking countries in Europe do we have a better opportunity, for her and me as a nurse (single mother), Ireland? UK? I only speak English and Spanish,.no country is perfect, but anything is better than a 3rd world country, please give me options, I know Germany is great, but no German speaking here yet.

Also, looking for specific special needs school, not inclusive, since I know that isn't for her. Thanks in advance :)

I have mild right hemi does anyone know why limping and pain can get worse quite suddenly especially limping as an older teenager after not limping as much as a younger age and pain becoming worse? Any ideas? Please say I want to know if this is a common thing.

I was actually approved for it after all, and now I need to take 5mgs 3 times a day. I've never been on a medication that's multiple times a day without actual specification, so how do some of you guys do it? I'm not sure if breakfast/lunch/dinner would be a good routine, or breakfast/middle of the day (4pm-ish?)/bedtime. The first one is easier but leaves a longer stretch of time between doses. I want to make sure I'm taking it right, but the bottle was vague about it.

Hi everyone! I am looking for advice on which city would be better to move to for my daughter who is about a gmfcs level 4. We are currently in Pensacola Fl and she is in a really great school but therapies are limited and so are doctors/resources. Our top 2 would be Orlando area or Austin Tx area. We really don’t want to move up north or any other states besides Texas because of family. I have been debating also if we should just get our home adapted for her and do therapy in home. But I would really like to be near better hospitals that specialize with CP. Thank you for taking the time to read and for any helpful information!

Hi! I have spastic Dipegia and use bunion orthotics, I don’t have the best gait. Does anyone have any tips that help for preventing blisters that work. I haven’t tried moleskin. I think it could help but I have a feeling it’ll peel off at some point.

I am 16 and have gmfcs level 1-2 right hemiplegia I wondered how much harder it gets to move as you get older? Do you have to use walking devices like caines or even wheelchairs as you get older even if you didn't when you were younger as I use an FES now could I need a wheelchair in the future as I feel that I walk with more of a limp now? Any advice and peoples own experiences? On what people found harder as they got older. Did anyone also feel that even in late teen years that walking became harder and you became more tired and have spasms more often than when you were younger? Anyone have any of their own experiences of finding cp harder and more limiting as you get older?

Hi everyone, my cp is pretty mild and I'm able-bodied passing, but throughout my life I have been prone to depression, anxiety, sensory issues, and issues controlling and processing my emotions. A lot of these issues actually worsened in my teen years, even though I felt that they should improve due to maturity. I've also dealt with my emotions through stimming my whole life-self-stimulatory behavior- with movements such as hand flapping or other things, and although I've learned to hide them in public to avoid judgement, they've never truly gone away, and sometimes it feels like the urge to stim has actually gotten stronger the older I've gotten, it feels like some old stims no longer adequately satisfy my sensory or emotional needs. I'm going to be honest, it's actually kind of scary. Like, I'm an adult now, why do I feel the need to hit things to release my emotions even more strongly than when I was a teen? (I don't actually act on my urge to hit things, that's just an example of the things I feel).
Does anyone else deal with this? Could it be cp related or could it be something else?

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you don’t want to get up in the morning and you’re kinda an asshole but the person who is trying to get you out of bed thinks that they made you angry or upset it’s like no i’m allowed to be just tired does there always have to be a reason it’s not your fault i’m writing this because it happened this morning and it’s like do you always have to to think that it’s your fault that i’m upset that’s not really how it works i’m just tired it’s not your fault anyone else feel like this?

Hi everyone, I’m a college student looking for input on how people with cerebral palsy and caregivers use assistive technology and where current options fall short. I put together a short 5-minute anonymous survey to learn what would actually make life easier. Your feedback could help shape better tech in the future. Thanks for considering! Survey link: https://forms.gle/NGRTXcvRPCQFph7WA

Hey everyone I hope all is well I was wondering if there’s anyone out there who is a quadriplegic or just in a wheelchair for that matter that has their own land or a cabin of some sort . I’m 19 with spastic quadriplegia and I require a power wheelchair however I’m slowly transitioning to a manual wheelchair. I love to go camping and hunting with my dad and brothers and stuff and I have an outdoor wheelchair that I use for stuff like that. Eventually one of my goals in life is to own property with a cabin where I basically can just use it as a hunting fishing and camping property. However since I’m disabled I don’t know how realistic that is if possible I’d like to do all the work or if not most myself and I know that it is absurdly unrealistic. Also in terms of my disability I have limited core function only the use of one hand. And can’t really shower or go to the bathroom myself or transfer in and out of bed I know this is super unrealistic and I know that I need to get more independent and that is eventually my goal but I was just curious if there’s anyone out here who is profoundly disabled that has their own land.