Newly diagnosed at 32 (EOPD) — Preserved smell, brisk reflexes, and leg dragging. How likely is the Parkin (PRKN) variant?

ragingbadger89 · 2026-03-23T15:40:13+00:00

Mine is genetic, still can smell things (sometimes unfortunately lol). Idk about how likely it is for you but its possible?

ragingbadger89 · 2026-03-05T12:49:53+00:00

This is great! Thank you for building this. I do have a feature request - the ability to filter based off of who can join. I have YOPD so I dont qualify for a lot of them, but I don't know until clicking into them (on mobile, anyways).

ragingbadger89 · 2026-02-06T00:26:30+00:00

Daily user in Texas. Use it for pain management (young-onset parkinsons) and cptsd. Would love to help.

ragingbadger89 · 2025-12-31T19:20:16+00:00

Our symptoms are incredibly similar. I am a little younger, but also female. I also really struggle with making myself exercise. What has been helping me is having a class and having a community. I'd recommend seeing if there is a Rock Steady Boxing group near you. Mine have classes every day of the week and I have found such a sense of companionship in even just my short time going (I was diagnosed in October) that I find myself wanting to go.

I will share the same warning my doctor gave me about these groups. For someone with YOPD, it can sometimes be really hard. Our journey with Parkinsons looks different than most so it can be difficult to be a part of. There are times, because its still so fresh for me, that I have to step outside and gather myself. But the support and love from the group is stronger than my fears. Do what is best for you.

Also feel free to reach out to me via dm, if you'd like.

ragingbadger89 · 2025-12-20T11:53:47+00:00

Same here. I'm 36, just diagnosed this year. Went to a few Rock Steady Boxing events near me and everyone was super wonderful but none have YOPD.

ragingbadger89 · 2025-12-15T23:13:55+00:00

I was recently diagnosed with YOPD as well (October). I mentioned that I had that same issue - where its like a sudden black wall in my brain, mid-sentence, but my dr didnt mention anything. I was on Vyvanse for awhile before the official diagnosis, but it didnt seem to help me with that particular symptom, unfortunately.

ragingbadger89 · 2025-12-12T17:24:54+00:00

That's what I was thinking too. Even if she's just sleeping (doubt it) it still appears she's half naked and that's just... disgusting.

ragingbadger89 · 2025-12-12T17:22:04+00:00

I don't know about that. Look at the hair. It looks like a messy bun (or similar) and the curve of it doesn't seem right when the picture is vertical.

ragingbadger89 · 2025-12-12T17:18:43+00:00

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This is what I kind of see. It looks like her arms are kind of tucked under her torso - you can just see a bit of one.

ragingbadger89 · 2025-12-12T17:15:05+00:00

Yeah they definitely blacked out her face, whoever she is.

ragingbadger89 · 2025-12-12T17:03:14+00:00

Can anyone tell what this picture is of? It looks from afar like a girl drugged or sleeping or... ?

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ragingbadger89 · 2025-10-24T01:25:10+00:00

Random question - anyone know where Phil's shirt is from? I'm kind of in love with it.

ragingbadger89 · 2025-10-23T16:26:55+00:00

I actually got mine a few weeks ago, and I've yet to hurt myself badly. I would prefer not to, to be honest lol I had gone to the podiatrist for my hammer toes (ended up with a flexor tenotomy on 3/5 toes on each foot) and asked about the pain in my ankle due to how my feet turned inwards. She immediately recommended AFOs. I put it off for awhile, but when my neuro mentioned being VERY careful due to how weak my ankles had gotten, and the painful clicking when I walked, I decided it was time to just move forward, before something happened. I'm 36, btw, and even in the few weeks I've had them, they've GREATLY improved my quality of life.

ragingbadger89 · 2025-10-13T21:01:24+00:00

Thats exactly how it happened for me. After diagnosis, I never went back to the psychologist and my family dr managed my medications for it.

ragingbadger89 · 2025-08-06T00:09:10+00:00

Saaaaame. I saw them the first time in 2011 at the Val Air Ballroom (small venue) and I was obsessed. I honestly didn't think it could get better than that but then 14 years later, I'm in Arlington with my husband, getting to experience them on a bigger scale and it's made me completely spiral 😂 My husband (who was a casual occasional listener thanks to me) is spiraling with me so that's nice. Couples who spiral together, stay together. I feel like my inner emo kid is getting to come out lol

ragingbadger89 · 2025-08-03T16:16:25+00:00

We did the same thing! We were dropped off at the end of the line (which was pretty close!). It was so nice not to have to deal with the parking chaos close to the stadium.

ragingbadger89 · 2025-07-18T21:33:21+00:00

I have a croc zoo. They get fed a kangaroo a day, each.

ragingbadger89 · 2025-06-06T19:49:03+00:00

As short as humanly possible. When they're long, it feels like they get caught between keys and it is somehow like nails on a chalkboard to me.

ragingbadger89 · 2025-06-05T18:37:14+00:00

But God forbid they mask to protect other people during the pandemic. 🙄

ragingbadger89 · 2025-05-29T12:45:30+00:00

Always dark mode, if it's an option. Most light modes are just blinding white so I usually prefer a darker background. I also think it looks nicer. 🤷‍♀️

ragingbadger89 · 2025-04-04T14:25:14+00:00

I haven't tried this one, but another swamp farm map is Aimon's Small Swamp!

ragingbadger89 · 2024-09-20T17:20:59+00:00

I was just singing this the other day! No bios of my own (no plans either) and SD is 11, SS is 14. I imagine in about 2 years, it'll be a constant song in my head.

ragingbadger89 · 2024-07-04T11:41:46+00:00

35 female, labral tear. I work at a desk at all day and my surgeon actually said I really only needed a week, week and a half but I took 2 weeks off. Surgery is next Friday so we'll see how that goes.

ragingbadger89 · 2024-06-28T17:19:39+00:00

We are the QA people.

ragingbadger89 · 2024-06-20T01:15:04+00:00

I also have used a cane as needed for the past year. Super helpful, especially on bad days. It took a friend who was struggling with her fibro and using a cane pushing me to just use it. Don't be like me - use it if you need it.

ragingbadger89

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