So, I've talked a little about my situation in some comments on others' posts, but I wanted to share something of a win I had yesterday. I woke up in some serious pain (hairline fracture in my right ankle. I've had it for months and it isn't healing despite the physical therapy I've been going to. I'm booking another podiatrist appointment for it). Anyway, after getting around my house with help from my family, my mother brought over an old walker my father used to use.

I can't believe I'm saying this, but using it was the first time in years I felt comfortable being on my own outside. I didn't need to hold on to anybody and I felt like I could actually go somewhere without relying on someone else. There are so many things I want to do, but haven't been able to because of my lack of independence with walking. I still need more time to get used to it, but I think yesterday was a very good sign.

My point here is, if you feel you're struggling with your mobility, don't be afraid to experiment with another aid that may provide better support for you. I haven't stopped using my cane, either. I still use it in my house. I think the walker may need some adjustments, but I'm hopeful one of my biggest issues may have a solution after all.

Putting together a deck for my son’s teachers to better understand his abilities, limitations, how he communicates, etc…He’s in 2nd grade genEd inclusion, left hemi, and has some struggles communicating and regulating. We’re also having issues with appropriate discipline from teachers, so I think it’s best to have a clear picture of his skills. Parent conference is scheduled with his team to go over everything.

I’ve spoken with him, but he’s 8 with the attention span of a goldfish sometimes (as most 8 yr olds do), and he just states his favorite foods and colors 😂

I’m trying to curate more “I” statements like “I feel ____ when I have to…” etc…

So coming to you all for things you wish your teachers had known about you or CP in general!

Hi Team
Im in my 40s and my left hand is basically non functioning, is this because I didn’t get any treatment early on? I have no idea if I got treatment for it specifically, I had gotten PT as a kid but not sure what for.
Im fully independent.
Do others here who are hemi cos of stroke have basically no function. If I move my right thumb my left moves slightly.
I just want to know if I had proper intervention, it would have been better but I don’t know if I had it?

Has any hemi’s managed to successfully reduce the asymmetry in their body? Starting with the shoulder and upper leg/hip

I feel like the asymmetry is half the battle.

Does physio help when your little to correct this

I don't know when we became friends; he just kinda spawned in.
(lets call him Jordan)

Only in recent years have I looked back and into the struggles people like him and anyone with CP has.

And it's shocked me to find out and also made me understand why my friend and I are so close.

Lack of pity.

Because he kinda just spawned in, I never really treated him any differently, which frequently almost everyone else did (which, me being a dumbass, didn't understand was due to his disability)

I've also noticed he never got 'bullied' in the sense of people making fun of him; there were a few occasions, ofc, but he sorted them out.

I just noticed people gave pity points whenever they realised, or at any event when something physical was going on, and I could tell this frustrated him. We spoke about it a few times and brought up a story about how he and I were play-fighting, and people stepped in saying, "You can't do that; he's disabled". I, of course, carried on because it's Jordan; the logic wasn't deeper than that. I didn't argue with them about the reasoning; I was just totally confused as to why I wouldn't want to wrestle him.

I just thought people were zoning in on him for no reason.
(With, of course, a few obvious scenarios)

But maybe it's because I grew up with him, idk.

I never knew how much he valued this type of relationship until the recent talks in the past year or two; he often credits this treatment to how close we are/were (Don't talk too much now, but he's busy.)

After Mitte passed away, may he rest in peace.

My love for the actor and my shock of his passing kinda made me realise that I've never done anything for CP, which makes me kinda feel like it's been a one-sided friendship on his part; he's always been there for me/been my fucking rock, and I don't know if I've done anything for him beyond just being a mate.
(But maybe that's all I have to be?)

Like, I feel like I should do something, but I don't know where to start. I also don't know if I should. Because why bring it up now? We are both at the start of our 20's and I don't know if he'd actually appreciate it.

Recently, he had a family member pass away, and he's now in a different city.

I want to show my support, but I can't think of anything other than the occasional message or call.

I want him to know I have his back, but I don't know if doing something for CP charity would be an insult to our dynamic, I just want to show him I care in a meaningful way.

And I just don't feel like a text message or phone call is good enough given our history.

Maybe doing a charity thing "For him" is quite performative, I'm unsure about my own intentions.

I just don't know how to support him in this rough patch, especially from a distance, as whenever we've been through things before a lot of the time its been together.

He's quite literally the brother I chose, and I'm fucking lost in the sauce.

Help?

(Note: I’ve never looked into this community before, so I apologise for my ignorance!)

Context bub is 8months old severe issues starting from pregnancy had high risk placenta previa born month early unresponsive event at 9 weeks old .
She’s had Severe feeding issues ,reflux ,clenched hands , super unhappy baby, stiff when getting changed or trying to put arms into clothing she tense up she also had clonus as a newborn up till 2months old very uncoordinated in hand preferred to roll right side clenched hands still now hitch crawling with the left side being the issue . She had her HINE assessment a month ago scored 63 but it says in the report brisk reflexes and spread can see that something is clearly not right given her history also says that she doesn’t need MRI but I’m thinking I need this MRI my gut is telling me something isn’t right she’s also my 4th none of kids did any of this . Does this sound like something isn’t right like they are missing the bigger picture ? I know mild CP can be very difficult to diagnose but any advice ?

We’re conducting a research study about how caregiving responsibilities can affect everyday activities, routines, and participation.

If you’re a parent or legal guardian caring for a medically complex child under 18, you may be eligible to participate.

Interested in learning more? Check out the flyer below for details about eligibility and how to participate.

Your experience matters, and we’d love to hear your perspective!

https://redcap.link/4fqqz141

I (41 f) am really in my feels today about my body. I’m 4’9” and weigh 131 at the moment- not terrible, but at a tipping point. I’m mostly vegetarian, and I do try to be aware of what I eat without becoming obsessive- I’ve had struggles with hyper fixation on food in the past, so I’m trying to relax, give my body what it needs while also just enjoying the experience of eating instead of worrying. I love food!

I am perimenopausal and before fall hit I was really into walking on my crutches, tackling hills for some good resistance and strength. I’ve been in and out of physical therapy (which is nothing like working out for me). I’ve recently been in pain from overuse of my dominant hand, so I’ve avoided walking any real distance for the time being. I’m seeing my doctor tomorrow to address the hand. Floor exercises that don’t depend on my hand so much have been an okay stand in, but they feel totally unsatisfying.

I am terrified that my hand injury is chronic, that my slight pudge is the beginning of a back slide… im now up against an entire host of factors: physical wear and tear of a disabled body, shifting hormones, slowing metabolism that comes with age. My doctor usually just says to keep active and watch my diet, which is laughable. I am terrified most of all of getting more difficult to pick up if I fall in a way I can’t get myself off the floor. I want to be lighter and physically stronger for myself and those around me. I want to keep moving.

I feel fat and lazy and sort of defeated right now. (Note: half of this is most certainly PMS😂😭😂).

Anyone else feeling the same? What has pulled you through these moments?

Tengo una andadera posterior modificada por mi mismo, con ayuda de amigos y familiares. Pero veo que hay muchos nuevos equipos de movilidad que me permitirán usar los brazos (arms free) y también me llama la atención, para el futuro, los exo esqueletos. Que experiencia tienen aquí al respecto? Alguien a usado. Zeen mobility device? Andaderas con y sin soporte?

Hi so recently I changed my Bumble dating app to only see women and non binary people as I am a pan cis woman. Unfortunately I haven’t had any luck :/ unlike my matches with cis men. I have spaticy Cerebral Palsy and I use a power wheelchair and have a speech impediment. Has anyone who is queer and has the SAME type of cerebral palsy as me had any luck finding a queer partner??

Hello! I am twenty years old and I have mild hemiplegic cerebral palsy.
I have been going through left leg pain for just over a year and nothing makes it better. I have done steroid injections, but the relief is temporary. My doctor says that If I get too many shots, I'll get weaker.
(My left side is my strong side so I am scared)

Anyway, I met with a orthopedic surgeon and she wants me to try an SMO brace before considering surgery. I have very flat feet and roll onto my heel which is why my foot constantly hurts and why the pain just won't go away! I meet with her again i April. She said that if I were to do surgery, she would do:
1. lateral column lengthening on my calcaneus
2. plantarflexion cuneiform osteotomy
3. gastroesoleus(?) recession

I just wanted to know if this surgery will be worth it. I just KNOW that I want this pain to stop, but I just wanted to know if any of y'all have done this type of surgery and if it might cause problems. (I'm sorry if this is stupid. I never have gotten orthopedic surgery, so I'm just nervous)

Thank you all!

Sources have confirmed that RJ Mitte's cause of death was suicide.

I know that living with cerebral palsy can be very difficult at times for a variety of reasons, I myself have had suicidal thoughts because of my condition, and I know I'm not alone in that. But if you are struggling, please know that suicide is not the answer. You have loved ones who will miss you, and there is a unique impact on the world that only you can make.

I'm posting this because I know that RJ Mitte's death would have hit this community hard no matter what, and I know that his death being a suicide would likely make it even worse, especially for those of us who sometimes have suicidal thoughts ourselves. Everyone, please remember that you are loved and cared for, and that if you ever need a space to vent, this Reddit is here for you.

Does anyone use a vibration plate? Thoughts? Recs?

We are in Ontario, Canada. Once my son is 18 months old, my mat leave is complete. He’s on waitlists for public daycares.

My son does not crawl, stand, cruise, or walk independently. We are in the process of getting an adaptive stroller, unsure of how long this will take.

I worried about his safety and the attention he will get at daycare. I understand that staff will be busy and my child has higher needs and I don’t want him just set in a seat for majority of the day.

I have the option of just going back to work part time and then he would not need daycare with my husband’s flexible schedule.

My son has 10 cousins locally that we see multiple times a week. Also has friends of the family so I don’t think he will miss out on the social pieces.

What are other people’s experiences?

I think it’s fair to say that our whole community is hurting right now in light of RJ Mitte’s passing. I was in a similar position at 22. Ironically I stumbled upon Breaking Bad, and my desire to finish the show played a role in me not following through with my intended plan. Twelve years later I am in a MUCH better place. This last weekend I had the opportunity to go up in C-47, and a B-25 Mitchell Bomber. Never would’ve transpired had I chosen a permanent solution to temporary problems. My old man always used to say: “Things are never as good, nor as bad, as they seem.” But up in an 80 year old warplane, they’re pretty damned good.

I'm a 34 year old woman and my partner a 37 year old man and I are planning on having children in the future. But I'm terrified. Not because I feel like I wouldn't love the child. I would adore them but because I don't want them to hate me. I'm terrified of them resenting me because I might need help reaching something, all my disability and wheelchair might be an inconvenience for them.

I don't I'm not even here yet and I don't want to hurt them. I don't want them to grow up and want to go no contact with me because I can't walk or I can't brush my hair in the back and might need a little help now and then. I realize this insecurities sound really stupid because I don't even have kids and I'm a virgin but that's because we're waiting for marriage.

I'm scared because I don't want my kids to be my caregiver. I want kids not because I need extra help but because I love their father so much. We've been together on and off for 8 years now and he really is the one. He accepts my disability without question. And said that God just made me special. Well his God he's a Hellenist. Not that I mind. I Adore that about him.

But I'm genuinely terrified of what happens when my child is God forbid 16. I don't think I can handle it if my baby ever looked at me like I ruined their life. Because I didn't mean to and I realize that it is 118 in the morning time. And I'm fucking ranting about a child that doesn't even exist yet but it woke me up in a cold sweat because it's my worst nightmare please can anyone give me advice I don't care who it is.

Just tell me something that I can look back on. Tell me things that will calm me down. Tell me I'm being stupid. Tell me whatever you need to. Just please tell me something. Because I'm sitting here feeling so much in love same time the thought of the future terrifies me and I don't know what to do so I'm just awake screaming into the void.

When threads get popular enough to reach the front page, breaking containment from the communities in which they were posted, a lot of subreddits will implement controls that automatically remove comments from accounts below a certain karma threshold in that specific sub (r/michigan has "mitten mode", r/baseball has "players only", etc.)

Speaking specifically to the recent posts about RJ Mitte's tragic death, in the most highly upvoted thread, there were a number of ignorant, bullshit comments, including a few about CP itself. I don't think it does anybody here any good to have people who hardly know what CP is invading a space for disabled people to talk amongst themselves and talking nonsense. It can be ableist, sure, but above all and most importantly it's fucking annoying and we shouldn't have to abide it in a space that's by us and for us. We don't need to have a thread about the suicide of someone like us where some jagoff is talking out of their ass about "average life expectancy for MS".

Hi everyone. So recently I made a post on here talking about how I’ve been dealing with a lot of big life changes, specifically being forced to drop out of college, being unemployed, moving back to my hometown, being cut off from my parents, etc. Since making that post, I have since found out that my food stamps were cut off and am now having to reapply which scares me because my circumstances have changed since I started receiving them and I’m worried I won’t receive as much money or I’ll be straight up denied. For reference I’m unemployed but looking for work while my boyfriend works full time, though his checks tend to vary.

I’m explaining all this to ask the question, how do yall handle everything? As most people know, the state of the world is complete shit, especially for people with disabilities as we have difficulties finding work and our benefits continuously being cut off or impossible to gain in the first place. I grew up in an environment where I was verbally and emotionally abused and sheltered, but didn’t have to do much besides be in school. This has led me to in adulthood not fully being able to pull myself together when times are hard or handle stress well (something my parents would love to remind me of despite them being the reason why). I don’t know, I just thought this was a somewhat interesting question and wanted to hear people’s perspective on things.

Have a great day/night

Wwyd: 30F here w left hemi (still live at home)... recently have accepted that I cannot do my hair on my own anymore and can not tie my left shoe on my own at all. Idk how to handle this as they are everyday/self care tasks. Help/advice appreciated

It did not go smoothly. But it went.

It felt nice to push myself into something challenging. Took a lot of noticing frustration without letting the frustration be in charge.

Definitely a practice in mindfulness.

Hi all,
I am debating on trying a peptide to help overall. I have ataxic quadriplegic cerebral palsy, and I have more issues with balance, coordination, and fatigue more than anything. I walk with crutches and overall strong, with some joint issues. I also have gastroparasis and struggle mentally sometimes. Has anyone tried peptides related to cerebral palsy and what was the result?

Thank you so much in advance!

My worst pain is on the soles of my feet. Below toes, every step feels like standing on a big bruise. It's around 3-4/10, not unbearable by any means but uncomfortable. Its strange but i've had this problem for 2 years and I used to barely notice it. I thought it was a skin issue and i tried to tackle this through foot baths and other home remedies. Last week a specialist physio told me this is due to some fat athropy and only treatment is insoles.

Since then I started to notice the pain with each step and it is really bothering me, walking on solid ground is challenging! How can i cope with this? I have tried foot inserts and im wearing 4 pairs of socks but so far no help. How can i go back to not paying so much attention to the pain? Im getting orthos but the appointment is not until January.

TMZ just posted he has passed away at only 34

I always liked him because he really had cerebral palsy and seemed to be doing well.

I'm now sad and sadder for his loved ones