Cold Weather Advice

Hi guys, I was wondering if anyone had any advice for dealing with the cold or rain in a power chair. A little background about me: I’m a male, I have Cerebral Palsy, and I’m a full-time power wheelchair user with about 80-90% function in my left hand and about 20-30% function in my right hand.

I’ve lived in northern New Jersey all my life with my parents as caretakers. Where I used to live in Jersey, it’d average like 20-30 degrees with lows in the single digits and the occasional snow. Safe to say, I’m used to the cold. However, where I’m going to school in Indiana, it can get well into the negatives and snow for weeks on end, with winter starting in late October and lasting all the way through March.

Fortunately, it hasn’t really snowed or been super cold as of late, but next week it’s going to get down into the 20s and 30s, with it potentially getting into the teens.

My solution in the past has been to have my parents dress me in the appropriate clothing and then, depending on where we’re going, leave my jacket and stuff on if it’s somewhere quick or take it off if we’re there for a while. However, in college, my aides won’t be coming to classes with me, so if I dress warm, I have to keep those clothes on me until I head back to my dorm.

My issue with this is it gets hot in my classes, and I don’t want to be the only jackass in cold weather gear when everyone in my class takes theirs off. Luckily, the walk from my dorm to my classes takes about 30 seconds outside, as all my classes are in one building.

So far, I’ve just been wearing sweats and an undershirt and a sweatshirt, and this has been fine. However, I don’t want to be confined to just sweats, as they’re not always the most fashionable. Aside from my classes, I spend a lot of time at another campus that’s a 10-15 minute walk from my dorm, with buildings much more spread out than my very small campus where my dorm and classes are.

I’ve been looking at wheelchair cold weather gear like ponchos and things, and they don’t seem very fashionable, and they look like they’d make me stand out, which is a big no from me. Big jackets don’t seem to be the solution, as they’re clunky and ugly. I have a couple of wool sweaters and a puffer jacket along with a stadium jacket.

Also, on the pants front, I’ve semi-recently started using a condom catheter with a leg bag and just found out that none of my lined sweatpants work with the leg bag and cath. I’m looking to get the bag mounted on my chair, then cut a small hole in my pants so I can run the tube from the condom to behind my knee, then through said hole to the bag on my chair.

Any ideas as for things I can do?

My 4 year old is having an SDR on Thursday (in Australia).

I feel as though I have been preparing him as much as I can in an age appropriate way, but I’m terrified of the immediate after

If anyone has had this surgery or has had a child who has had this surgery I would really appreciate any advice, anything you found really helpful to take to the hospital? We will be about two hours away from home, so I don’t want to forget anything.

Thanks so much 🫶🫶🫶

Despite living with a severe form of cerebral palsy, Johan has never let his condition define him or hold him back.

While he can't play the guitar in the traditional way, Johan has developed his own unique method of making music. For him, it’s not about perfection but about expressing himself and sharing his passion for sound in a way that’s entirely his own.

Johan also has a deep love for speed and the water. Though he needs assistance getting into a boat, once he’s seated, he takes full control. Steering the boat on his own, he experiences the thrill and freedom that come with gliding across the waves.

Beyond his personal hobbies, Johan has used his life experiences to inspire and connect with others. He’s authored several books that offer a glimpse into his world and the challenges he’s faced. Additionally, his online community of over 13,000 followers on Facebook has grown into a platform for encouragement, creativity, and resilience.

Johan’s story is proof that having a disability doesn’t mean you can’t push boundaries, inspire others, and live a life filled with purpose and joy.

You can learn more about Johan Öberg by watching our documentary, now available on Amazon Prime UK, US, and Fawesome.

Watch it for free on Amazon UK: https://www.amazon.co.uk/Cerebral-Palsy-Blues-Johan-%C3%96berg/dp/B0D7R3PD4C

Fawesome: https://fawesome.tv/movies/10634902/cerebral-palsy-blues.

For now, only for rental in the US: https://www.amazon.com/-/es/Cerebral-Palsy-Blues-Johan-%C3%96berg/dp/B0CWFQ1SQM

Hello everybody,

I am a 33F from Brazil and I have just started the process to take my driver's license. I have passed the psychometric exam and my next step will go through another medical examination to see what kind of adaptations I will need to have in a car to drive.

I've seen some videos of people with cord injuries driving , but not someone with my kind of CP (hemi on the right side plus left leg). Is there anyone here with this kind of CP that drives? If so, how do you do it?

Thanks in advance

Hi friends I know I post here a lot but I am working on a fictional detective type thriller if anyone wants to read my [very] rough draft let me know

Hi everyone! This is my first Reddit post. I'm looking for honest feedback about auto wrap curlers such as the Dyson airwrap, the shark Flex styler etc. I have use of both of my hands but my left side is definitely my strongest.

I just really want curly hair and I have found it a struggle to curl with a hair straightener, a beach waver and a hot brush. I can usually do a couple at the front but absolutely none at the back and looking in the mirror. My hands get all confused trying to twist and turn things and hold things, if that makes sense. I'm wondering if anyone has had any luck with the auto wrap curlers? It seems like they might slightly be easier after a bit of a learning curve?

It's just a bit of an investment and I don't know anyone with one to try out so I thought I'd ask the community 🙂 thanks in advance!

I got Botox but still spastic. I wish I would die already

Hi! I have a cousin who has CP and he has a severe case as he cant walk. I am looking for gift ideas what to get him. He is into cars and balls, I have already gotten him so many cars and clothes. He also has an ipad where he likes scrolling through youtube. So this year I want to do something different, I don’t know want can I get him that will be helpful and fun for him. Ill accept all kinds of suggestions, thank you!

Hey I am 24(m) I have mild Cp, I feel my symptoms mainly in my left leg and my doc says that it also affects my right leg, I am a med student I try to keep a healthy lifestyle I go to the gym Yet I deal with pain due to spasticity and I lose some days at school and work due to it, I am searching for a partner or a group to go through this together and to build and accept myself, so if you think what I said is relatable you can leave a comment or send me a massage.

I'm super embarrassed the most cringe worthy cp moment just happened

So I have a walking stick. It's raining here right now and I was walking to the train station on the way back from a meeting with my colleague. I probably should've held onto his arm or something but I like to be independent and feel uncomfortable doing that with him sometimes. Anyway when the ground is wet the stick can slip, making me slip and fall. This happened in front of my colleague, in a crowd of people who rushed to help (I hate the negative attention) I was like a baby giraffe and couldn't get my footing back. I'm so embarrassed and what's worse? It happened at a driveway and a car was pulling out as I fell! I luckily wasn't hurt, but I'm shaken and so angry at myself! Does anyone feel this when their disability fucks up their day? Like I wasn't hurt physically but the emotions and the pride and embarrassment hurts more? In need of comfort

🍂 Happy Thanksgiving, Everyone! 🍂🦃

Today, I’m counting my blessings and feeling grateful for all the love, friendship, and support in my life. Thanksgiving is a time to reflect on what truly matters, and I’m so thankful for the incredible people who make my days brighter.

Whether you’re surrounded by family, friends, or enjoying a peaceful moment to yourself, I hope your day is filled with joy, laughter, and plenty of delicious food! 🥧🍗

Wishing you and yours a beautiful Thanksgiving full of love and gratitude. 🧡

What are you thankful for this year? Let me know in the comments!

I 27F have cerebral palsy and all with a walking stick but can't do very long distances. Looking for something fun but relaxing. Not too much walking, flat and accessible as possible.

Please comment your experiences as part time wheelchair users. Open to discuss different places and experiences. Comment away Getting married October 2025

We are identical twins btw!

1. I have like lots of engenry never tired unless I’m sick, While my sis haves cp also and she’s always tired we go in the same bed time. So idk how she’s allways tired.

2. When i feel sick my muscles hurt while my sister muscles dont hurt when she is sick

So these are my questions me and my sis are twins age 15 going to 16 in next week btw!

I have mild CP and primarily deal with Achilles tendon tightness and spasticity. To say I'm not very stable on my left side. Will keeping a wrap on my ankle help with daily pain and general stability, or is relying on additional support throughout the day detrimental?

So, this past weekend, I was hanging out with my family, and my brother was complaining about his back hurting. Naturally, I asked him what was wrong, and he kind of flipped it on me like, “What’s wrong with you?” Without missing a beat, I said, “Oh, I was born like this.” (my family has a weird sense of humor)

Then my little niece, who wasn’t part of the conversation at all, walks by and goes, “You were?!”

And I’m just sitting there, thinking, What does she think? Did she think I woke up one day and thought, "You know what would really spice things up? A permanent limp!" Or maybe she didn’t notice I was disabled, because I’ve always been this way.

It’s weird, because now I’m wondering, did she think I intentionally started walking like this for some reason? Or did she just never really see it before? It’s kind of funny, but also a little odd when you realize someone might not even realize you have a disability because it’s just always been part of who you are.

Has anyone else had moments like this where someone reacts to your disability in a way you weren’t expecting? I’m just not sure how to feel about it!

hi f 20 I suffer from diplegia and since I am young I suffer from urinary leakage or more urinary incontinence. someone who has diplegia can tell me if he has a similar problem because I never understood if it was due to my disease thanks

Advocate is in quotations cos I’m quoting my teacher training provider who say I have to start advocating for myself.

If I’m honest I’m not used to it at all like I genuinely don’t know where to begin I know it might sound stupid but I’m being so serious. Like usually when I notice I’ve had an additional need, if there hasn’t been accommodations for me I’ve just found a way to make it work for myself and I thought this was a good thing because it’s made me good at problem solving but at the same time it would just be easier if I was open and upfront about my condition but that’s really hard for me because I struggle to ask for help because I’m used to dealing with everything by myself and plus my household/culture isn’t the most understanding about my CP. Like my family understand certain physical needs I have but it’s limited to just that. They don’t understand the cognitive affects of CP or that CP is brain damage.

Can anyone here help me?

So recently I've gotten a bit more into trying to figure out why i/my body behave in the ways they do and I've had some other people end up suggesting cerebral palsy as a possible explanation to some things which was the first time I had sombody suggest that. (Just fyi im not looking for a diagnosis just a small rant). I've had some issues walking for as long as I can remmember, I always feel like ik walking drunk since my pace is not fixed and my body tends ro wobble a decent bit randomly if I don't focus and I struggle walking properly in a straight line without stumbling. I have pretty tight calves which to my surprise apparently also is another possible symptom, I also have general issues which more fine motor control that I always attributed to my asbergers but it feels like cerebral palsy would be a better for to explain the whole package of things happening to me. I'm almost always slightly uncomfortable in chairs and stuff needing to constantly adjust my clothes or hoe im sitting and I struggle very badly to sir properly on a back-less chair as even sitting up straight firstly is very tiring fmon my back and always ends uo literally hurting regardless of if I sit upright or with a badly bent back etc and sitting too long makes me easily sore if it doesent have plenty of padding. Even then I keep constantly adjusting myself and how I sit still. I am also pretty clumsy handling small objects I often drop thrm or get pretty shaky randomly for some things (I dont struggle with big shaking usualy just slightly occasionally) and sometimes if I'm a bit stressed I have like big shakes sorta likr a big one time twitch in my arm or body pretty much randomly.

Sorry for the rant or if it might not be very coherent since I'm just writing this quickly before bed so that I don't forget. Again I'm not looking for a diagnosis I'm just kinda wanting to put this out somewhere instead of just going g around thinking about it. And to whoever reads this to the end, have an amazing rest of your day!!

28F Spastic Hemiplegia CP on left side. I feel like my mobility is declining more and more as i’m aging. I made an appointment with an orthopedist today and he essentially told me there’s nothing he can do to help me besides get physical therapy. I felt so defeated like no doctor wants to help me or put in the effort to work with me and just cried the entire way home. My hamstrings and quads are tight. I walk with a cane on my right side. My left knee is weak which is causing severe pain. I took steroids for a week for the knee pain and omg the relief was amazing. i used to be able to go to the gym but not anymore it’s too painful or hard to get on some machines bc of how tight my muscles have gotten. I’m trying to find treatments so I can regain my mobility and slowdown the degeneration. What have people looked into that have been really helpful and who do I ask? I live in the NYC area if that’s relevant for anyone.

Long story short, I’ve started to develop IT band problems most likely due to my flat feet and refusing to wear supportive shoes. So I definitely need to be better about the support I choose. Does anyone here have Hokas and do you recommend them? I usually wear New Balance 608’s but I’m thinking even those aren’t giving me enough support to avoid an IT band flare-up. Or another shoe besides Hoka, I’m open to all recommendations!

Thanks in advance!

Hello all,

My 3 years old boy is spastic diplegia and we are regularly doing physio, using AFOs, knee braces. I am visiting Seattle soon for work and was wondering if there are communities or therapy centres that I can visit and learn about more methods, helping instruments that I can look for. Appreciate if anyone here is from Seattle and can share details.

Hi. I am the parent of a 13 year old boy with left sided hemiplegia.

Today he was sent home early from school as he was having tremors in his right hand. This has only happened once before maybe 2-3 years ago and my attempts to Google info haven't been successful.

I wondered if this is related to his disability or if you think it could be something else? Did you find new things presented themselves when you hit your teens?

I will be keeping an eye on it and will be contacting his gp and consultant if it persists but it wore off after a few hours and he seems completely fine now.

I am not a fan of wearing shoes.

Does anyone else not wear shoes with there afos, with the bare plastic, is not very safe, specially on wood floors.

any ideas on making them safer?

Hello, I'm a F(26) with Spastic Hemiplegia and my arm is most affected. When I was younger, I had a tendon transfer in my wrist and had Botox done twice in my arm but it was not effective at all.

I have heard of this new treatment; hyaluronidase injections, which is supposed to reduce spasticity and has fewer risks than Botox. So I was wondering if this treatment is available in Canada, or are there any alternative treatments for adults with CP? I am new to Ontario, Canada, so I'm not sure what health treatments are available here that are covered by basic medical insurance.

Additionally, I was wondering if it is possible to get the tendon transfer done again on my wrist. I had the surgery previously on my wrist and it helped a lot with the tightness and pain.

Thanks for your help!!!

What are your thoughts on it? I loved it personally! I was so pleased that they cast An actual wheelchair user as the main character

Hi there! I'm mom to a 12 year old with mild R hemiplegia. She LOVES to paint her nails, but hates how I do it. She paints her right hand and I paint her left. I admit, the outcome is less than stellar when I apply nail polish to anyone. Lol.

She has tried holding the applicator brush with her right hand and moving her left hand under the brush but she gets frustrated at the result.

Anyone have any tips or gadgets that might work for this situation? It may seem small but it's a big deal to her. Thanks!

Hi everyone.

I'm not exactly sure how to explain this post.

I'm a 30f with spastic hemiplegia. Yesterday in part of a discussion ranging from religion to social interactions with my father I had confessed that as a teenager when I was reading books on sex education, I had believed as a teenager that I was unable to have any relationships let alone sex or love.

My father immediately said (in a good way mind) well ypu always put limitations on yourself and you need to get out there and talk to people instead of online friends.

He's right but I argued that it's hard to not have imagined limitations because I feel my limitations everyday as a result of pain to emotion burnout.

I perfer online friends because people tend to push me around in the past. I'm so antisocial thst I barely talk to my long time real friends because I'm unused to it

I despise hearing that limitations are all in the mind. I don't believe that fully. What I mean is there's a point to the saying but there ARE limitations I think based on energy or pain tolerance. It's so easy to say the limitations are in the mind.

Am I being pessimistic woe to me here? Am I valid in my thoughts or am I full of shit so to speak?

Hey all!

I (26F) have mild spastic diplegia that largely affects my right side and means that I walk with a slight limp. Although I have a mild form of cerebral palsy and function day-to-day independently, I can often get down on myself and feel frustrated that it takes me longer to do the same things able-bodied people can do.

When I start to feel like this, I often look to people in the media to inspire me to not give up on stretching, keeping my body active and pushing myself out of my comfort zone. Representation of cerebral palsy is soooo varied but I would love to know who you look up to when you need motivation. For me, it's Maria Lyle (olympian) and Rhiannon Clarke (olympian).

My girlfriend has a carer (we are in the uk) and she is the worst. In the last week she has:

Laughed about an old client having her wheelchair taken away for drunk powerchair driving (this is not legal)

She mocked my pyjamas as they’re floral (I am trans and she said if I want to be a man I should not wear them) and she misgenders me even though I have a beard etc and she’s only ever known me as a man

Asks questions about our sex life

Comments loudly on my partners body hair, poop etc says stuff is disgusting

Told my girlfriends mum about our relationship even though she said not to

She goes on tirades about how she is an asset as she’s white and British and is racist about the international students even though my girlfriend is not white or British

My girlfriend is Latin American and she complains about how the Latin American in New York “aren’t like us” as they “rape people” even though we are not in the USA

She flirts whenever there are working men around and says things that are problems arent- once my gf collapsed and she said “it’s no issue we can just call the fire brigade” when they offered to pick her up and when the wheelchair tech was rude (on multiple occasions) she brushes it off and says “he’s just rubbing you up the wrong way it’s something about his face not what he’s done”

Whenever we do something different like put something in a different place or put the washing on a wrong setting she catastrophises the whole situation and says she could fall over reaching a new spot and the ambulance would have to come or all the clothes will shrink

She always says my gf is emotional and uncontrolled and this makes her “unintelligible” which confuses people to explain stuff like the wheelchair tech people being rude

When she is “off the clock” she literally stops working even though she is up so she has left my girlfriend in bed in her pee 3 times when I’m not there

I got my gf an resistance band thing that she can use to excersise her legs a bit as they go numb a lot but she won’t use it as she “doesn’t have legislation” which is the wrong use of legislation and also just doesn’t make sense imo

Is this what people expect- how much of this is completely against carers rules. My gf doesn’t want a new carer as it’s her last year of her uni and her council have provided her but this woman is just unbearable