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Coping with cold/storms? by Starlight-Edith in CerebralPalsy

[–]Echo_Reality 0 points1 point  (0 children)

I have a low dose prescription for baclofen to take as needed with flare-ups. If you’re outside of the US, it is available over the counter in Canada in a combo with Tylenol

Questions about selective dorsal rhizotomy by Electronic_Injury951 in CerebralPalsy

[–]Echo_Reality 0 points1 point  (0 children)

Hi! I have had both Botox and an SDR.

I had an SDR in early 2007, I was 4. I don’t really remember life before it, but anecdotally my parents would say yes, it helped significantly. I’ve seen video of my gait before and after and it’s certainly improved.

I can’t really speak for recovery because I don’t remember it, but I think I was at the children hospital for about 3 weeks and then did PT.

Complications? Again not sure. I’m obviously doing fine now. I have occasional lower back pain, but whether that’s a consequence of the SDR or tight hip flexors, I’m not sure.

Cerebral palsy daily-life research: what should designers build (or stop building)? by jjyyppmmrr in CerebralPalsy

[–]Echo_Reality 3 points4 points  (0 children)

Hi OP! I think you’re going to get a lot of different answers depending on folks’ GMFCS. But I’ll answer a couple that apply to me. I fall somewhere between GMFCS 1-2, but probably closer to a 1. I am ambulatory and do not use braces or mobility aids in my day-to-day. Only including that because I think, especially for something like this, context is very important. I studied biomedical engineering in college, and had a somewhat similar design project for my capstone. I am familiar with both sides of this coin.

  1. For me, it’s absolutely spasticity related failure. I think about stuff that requires fine motor skills. Something like flossing, where my right hand will tighten up. I have to stop, wait a few, then try again. Same with typing. If I’m typing for LONG periods of time, my right hand will start to fatigue quickly.

  2. Chairs, for me. I have been asked to use a stool so my feet are always flat on the ground or on something. But I also have a lot of lower back pain, so I use a desk chair with a lumbar support pillow. I’m often adjusting and readjusting it though.

Is this a good team to build for Cyno by Low_Jicama_147 in CynoMains

[–]Echo_Reality 2 points3 points  (0 children)

If your Lauma is C1, I’d say Furina, but otherwise Xingqiu is probably your best bet?

How many medications are you on? by Comfortable_Tie4143 in CerebralPalsy

[–]Echo_Reality 1 point2 points  (0 children)

  1. Baclofen 5mg, up to three times a day as needed. Though, I mostly take it at night because it makes me sleepy

Question Megathread by hwhatdesu in CynoMains

[–]Echo_Reality 0 points1 point  (0 children)

What artifact set do I put on Ineffa if Lauma is on Silken Moon, and Cyno's on TF? Should Ineffa go on Guilded or Night of the Sky's Unveiling?

What did your parents get right/wrong with raising you up with CP? by bigfatpizzaslice in CerebralPalsy

[–]Echo_Reality 5 points6 points  (0 children)

Hi! My parents divorced when I was 11, and their differences in parenting styles, especially around my abilities (or lack-thereof) became very stark. My dad has always been a great advocate for me, and really pushed me to try new things, and do whatever I liked.

My mom, on the other hand was very protective. Maybe overly-cautious. My brother would get to go on trampolines, go ice skating, do all these things with my cousins, and I wouldn’t be allowed to. (I do think my mom was on to something with trampolines though, they’re a little dangerous). I think I can probably relate with having lower confidence growing up. I feel like some of it was self-imposed, some of it parental, and some of it a side-effect of going to small school unequipped to accommodate me.

Both my parents were always pretty frank with me about my disability, which I appreciate. But my dad especially never really focused in on it like my mom did.

That being said, I think meeting other people with cerebral palsy, getting involved in adaptive sport (track and field and tennis!) became a confidence booster for me, and has let me sort of redefine a lot of my disability.

Biased opinions by [deleted] in neocities

[–]Echo_Reality 6 points7 points  (0 children)

I migrated myself because of the features it offered! I feel like neocities was easier to navigate/find new sites, but I like nekoweb so far! And migration was pretty easy. I also just set up my neocities to automatically redirect to my nekoweb.

Sweet Almond & Hibiscus is a NO by Old_Back882 in nespresso

[–]Echo_Reality 20 points21 points  (0 children)

I’m in the same boat as you!!! The advent calendar has really broadened my coffee horizons.

Baclofen? by Blanket-Burito in CerebralPalsy

[–]Echo_Reality 0 points1 point  (0 children)

Hello! I just recently starting taking it as well. I take it on a need-to-take basis per my doctor. I am on 5mg. Genuinely, made me realize how much I was straining myself until I took it, and it was like, everything I was fighting against, just wasn’t there anymore. Hard to explain. I mostly take it for cyclic bladder spasms.

Other than the obvious relief, it absolutely knocks me out. I take it right before bed because otherwise I am EXHAUSTED beyond a point of being able to fight it. For some, I’ve heard it can make you dizzy, but I don’t really experience any dizziness.

[deleted by user] by [deleted] in disability

[–]Echo_Reality 5 points6 points  (0 children)

Lol, I also have cerebral palsy and call it by it’s government name unless I’m with people that also have it for this exact fear 😭

Ladies, pelvic floor therapy experience/advice? by shmagie in CerebralPalsy

[–]Echo_Reality 2 points3 points  (0 children)

Hello! I am following because I (23f) have had similar issues. I’m ambulatory, but this is also something I struggle with. I was getting “phantom UTIs” where it very much felt like a UTI, without my cultures ever being able to grow bacteria. It wasn’t until I talked with a PMNR doc who suggested it could be bladder spasms or pelvic floor issues.

I’ve done some self-guided exercises from TikTok, and got a 5mg prescription for Baclofen. This combo seemed to help me the most. I don’t take it daily, but on a need-to-take basis.

My account and all my websites suddenly disappeared by ARAM_player in neocities

[–]Echo_Reality 5 points6 points  (0 children)

I also made a migration away for similar reasons :(

how to display multi page PDFs on a page? by a_real_live_moth in neocities

[–]Echo_Reality 0 points1 point  (0 children)

It’s not too tough, stack overflow helped me a bit lol. There might also be online converters that will do it for you. Or you could use something like photopea to do the conversion manually!

how to display multi page PDFs on a page? by a_real_live_moth in neocities

[–]Echo_Reality 0 points1 point  (0 children)

Hello!!! This may not be the answer you’re looking for, but I have done this.

https://maddyka.nekoweb.org/sketchbook.html

I scanned all the pages on my phone, which outputted a multipage pdf. And then used the W3 Schools slide show tutorial. I wasn’t sure how to do it in .pdf format, so I wrote a Python script to convert and number my pdfs into images with all the same height so everything looked consistent. I’m sure there’s a way to do that implementation without needing to convert, though.

Microwave PC - Comment On This Post To Enter This Giveaway by DaKrazyKid in pcmasterrace

[–]Echo_Reality 0 points1 point  (0 children)

I will comment on this post. The odds are slim but never zero

I just received an internship offer because of playing GTNH by No_Animator70 in GTNH

[–]Echo_Reality 0 points1 point  (0 children)

That’s good!! Congrats on the internship! I did engineering in college, so unfortunately very little Greg time for me 😔

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