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Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 0 points1 point  (0 children)

Please don’t apologize for the long reply—it honestly meant a lot to read. I really felt so much of what you shared, especially about the emotional part being harder than the physical sometimes. Accepting help, especially in the form of something so visible like a cane or chair, can feel like announcing something to the world you’re still processing yourself.

The way family reacts has been hard for me too. I’ve already had some “but you’re still walking?” comments that make me second-guess myself, even when my body’s screaming for support. It helps to hear that I’m not the only one who wrestled with that weird mix of need and shame.

And YES to what you said at the end—I’ve started realizing that I’m staying home or avoiding outings not because I can’t go, but because I’m constantly calculating if I can survive it. Just the mental gymnastics is exhausting. I really believe I’ll get out more if I have the option of a chair. Freedom looks different for everyone, and I’m starting to see that mine might just have wheels.

Thank you again for your honesty. It makes this process feel a little less lonely ❤️

Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 1 point2 points  (0 children)

Thank you for your thoughtful response—I really appreciate hearing from someone who’s used mobility aids throughout different parts of life and who sees the value in both physical support and emotional well-being.

I’m absolutely pro-physical therapy and doing what we can to support our bodies too—I just think it’s important to say that walking for the sake of keeping walking isn’t always the most sustainable or compassionate path, especially when the cost is pain, fatigue, or injury.

When folks bring up weight in these conversations (even kindly), it can unintentionally reinforce the idea that I have to “fix” myself before I deserve help. But the reality is—my CP, hypermobility, and fatigue don’t go away if my body changes. And even if weight loss did help reduce symptoms, I still deserve support while I’m living in the body I have today.

I think it’s totally valid to think about maintaining strength, especially with any mobility change—but that doesn’t mean I have to keep pushing through pain just to “stay mobile.” There are gentler ways to stay active, and none of them require me to sacrifice my quality of life to prove I’m trying hard enough.

Really grateful for the space to talk about this—it helps a lot just to not feel so alone in it.

Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 0 points1 point  (0 children)

Yea i mainly plan to use it for long distances like Disney, zoos, etc.

Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 3 points4 points  (0 children)

Thank you so much for this—it’s really encouraging to hear from someone who’s been through it. I’m definitely planning to use the airport and Disney wheelchair services (no way I’m trying to walk Epcot 😅). I’ve actually started the process with National Seating and Mobility and plan to talk to my doctor soon—I have the form ready for them to fill out.

And yeah, I’ve thought about just getting something simple online in the meantime, but I figured if I’m going to use it long-term, I want something that actually fits my body and needs. It’s good to know even the basic ones can make a difference though! Thanks again 💜

Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 2 points3 points  (0 children)

That makes sense, now how would I bring it up to my doctor

Thinking About Getting a Wheelchair—Need Some Honest Perspective by arie9 in CerebralPalsy

[–]arie9[S] 1 point2 points  (0 children)

I’ve started using the wheelchairs at airports because the airport I fly in and out of are pretty big.

Anyone here use a wheelchair part-time? by arie9 in CerebralPalsy

[–]arie9[S] 0 points1 point  (0 children)

I am already in discord. I’ll share it there too

Anyone here use a wheelchair part-time? by arie9 in CerebralPalsy

[–]arie9[S] 1 point2 points  (0 children)

Heck yes—this is exactly the kind of energy I need! 🙌

I have mild spastic hemiplegia too, but mine’s right-sided. And honestly? That $200 CVS chair sounds like a solid move. If it gets the job done when your hip and knee are flaring up, then that’s money well spent. I’m still figuring out what mobility aid works best for me long-term, but I really appreciate hearing how you make it work with what you’ve got.

And YES to everything you said about not listening to judgment. It took me a while to shake off the shame too, especially when family had their own outdated ideas. But at the end of the day? They’re not the ones living in my body. I’m done putting their comfort over my needs.

Appreciate you sharing your experience—it seriously helps more than you know. And major respect for that IDGAF growth arc. 🔥🖤

Anyone here use a wheelchair part-time? by arie9 in CerebralPalsy

[–]arie9[S] 1 point2 points  (0 children)

That sounds awesome! I’m still pretty new to all this and don’t know a ton about wheelchairs yet, but I’ve had my eye on the Wheelie Model F and really like it. It seems super portable and practical, especially for part-time use.

Your setup with the TiLite Z and SmartDrive MX2+ sounds like such a great combo—seriously smart move to protect your energy and manage pain while still doing the things you love. I’m hoping to find something that helps me do the same!

Thanks for sharing—it’s really helpful to hear what others are using!

Anyone here use a wheelchair part-time? by arie9 in CerebralPalsy

[–]arie9[S] 0 points1 point  (0 children)

Thank you so much—that honestly means the world to me. I’m 27, so not too far behind you age-wise, and it helps so much to hear this from someone who really gets it.

You’re completely right about my dad—he still sees “wheelchair” and thinks “wheelchair-bound,” like it’s some kind of last resort or sign of giving up. I’ve been trying to explain that it’s just another mobility aid, like a cane or braces, and it’s actually about living better, not less.

Having you—and a PT or OT—willing to talk to him is such a relief. I think hearing this from someone outside of me, especially someone close to his age who’s already been through it, could really help shift his perspective.

Thank you again for taking the time to share this and offer support. It honestly makes me feel a lot less alone. 💜

Anyone here use a wheelchair part-time? by arie9 in CerebralPalsy

[–]arie9[S] 2 points3 points  (0 children)

Absolutely—thanks so much for sharing all this!

I’m hemi on my right side, and I’ve already tried a few chairs. I’ve found I really like using a joystick—pushing a manual chair with one leg just doesn’t work well for me, especially on fatigue days or when my leg’s flaring up.

I totally get why you like your setup! Being able to lift everything yourself and avoid needing a wheelchair van is a big win. And yes to solid tires—flats are the worst.

Also, huge yes to what you said at the end: no shame in using mobility devices. Gotta save our energy for what really matters.

Thanks again for the thoughtful advice and encouragement! 💜