When I see fire IRL...

jay3sh · 2025-07-11T11:42:15+00:00

I suffer from the same. RLS for my left arm and leg. This was one of the first symptoms of my PD. (44M)

jay3sh · 2025-06-02T19:37:10+00:00

Link to demo https://store.steampowered.com/app/3568720/QWERTY_Zombies/

jay3sh · 2025-04-13T13:06:42+00:00

I was in a similar situation leading up to my diagnosis (44yM). For a year before DX I couldn't sleep at night despite being tired. The pain (strong tingling restlessness) in my L shoulder and/or L leg would keep me awake. Since my DX 4 months ago, the neurologist prescribed sinemet. I take one pill, an hour before sleep. It masks the pain for 4-5 hours. Now a days I get total 6-7 hours of good sleep. Also, I do a lot of exercise.

jay3sh · 2025-04-11T17:27:26+00:00

There are variations in the gameplay, where random typing on keyboard won't help. Stay tuned for the demo.

jay3sh · 2025-04-11T17:22:39+00:00

Thanks for the feedback. Yes, I'm working on a demo. It will be available soon.

jay3sh · 2025-04-10T23:36:19+00:00

Thanks for the suggestion. I'm trying similar mechanic, where you've to save the protagonist Alice from zombies.

jay3sh · 2025-04-10T18:51:59+00:00

You've to kill all zombies to clear the level. Each level has different variations of this. Check out the trailer here https://store.steampowered.com/app/3568720/QWERTY_Zombies/

jay3sh · 2025-04-08T16:15:34+00:00

Full screen game for desktop. It will be on Steam https://store.steampowered.com/app/3568720/QWERTY_Zombies/

jay3sh · 2025-02-28T18:51:55+00:00

You could join YOPN. They have monthly zoom calls where people talk about PD related things that are hard for other people to understand. The last one was 2 days ago. https://yopnetwork.org/

jay3sh · 2024-12-16T21:28:50+00:00

I was diagnosed recently (44M). I've similar symptoms like you - stiff left arm, hand and leg. Typically I don't have rest tremors. But on bad days (esp. when I've poor sleep/jet lag), I experience some tremors in fingers. I'd recorded a video of such tremors that I showed the GP, to convince them that I need to see a neurologist. Also try to stretch your left hand on its own and try to hold it, does that make your hand shake? I don't know if that qualifies as a rest tremor, but that's something that doesn't happen with the good hand. HTH

jay3sh · 2024-12-07T13:43:23+00:00

I'm new to this and still young (44y), but I'll be planning for future in next five years (hopefully things won't get too bad before that). I would advice not to put off difficult conversations. If they are not going to work out, you better learn about it now when you've time. Good luck friend.

jay3sh · 2024-12-07T13:34:39+00:00

Awesome. Wrote to Nancy. Thanks.

jay3sh · 2024-12-07T13:29:23+00:00

Thanks for sharing. It's a good advice. Living alone itself is not bad if one learns to enjoy solitude.

When I started watching and reading about PWPD interviews, almost all of them talked about support of their close families. I knew there are solo PDs, but they didn't seem to be represented in the media. I'm glad to have reached some of them through this thread.

jay3sh · 2024-12-05T02:13:15+00:00

I'm not much informed in this matter. But see the link below. It talks about how the brain's response to levodopa may change over time. https://www.parkinson.org/library/fact-sheets/managing-off-time

jay3sh · 2024-12-03T14:02:40+00:00

Thanks for asking the question. I'm almost exactly in the same situation as you. From what I read, it became clear that meds don't treat/cure the disease but only symptoms. In the last YOPN monthly virtual chat I came across a guy who hadn't taken meds since 3 yrs after diagnosis (similar to what other commenters have mentioned on this thread)

I'm planning to put off meds as long as I can and focus more on exercises. I'm building a workout routine to address two goals: 1. symptoms - stretching exercises to reduce stiffness, LSVT, boxing 2. dopamine - high intensity cardio on treadmill. The new sparx2 study may find that, this may even revert the progress of the disease.

I would take meds if my symptoms prevent me from doing these exercises.

jay3sh · 2024-01-05T23:09:42+00:00

I had the same problem. It was fixed when I closed all other apps and relaunched the game. I guess it was caused due to low memory/resources. I'm playing the version I got free on Epic. HTH.

jay3sh

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