Wow! So far Bluesky has been great but still not seeing a lot of #parkinsons people - where you at? Are there #pd orgs here yet? #yopd friends? Come out come out wherever you are! #disability #parkinsonsdisease
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We’re a shy bunch, but can be gently encouraged to come out of hiding with a little treat. No, wait. I’m thinking of guinea pigs. 🤔 Early days. It’ll be interesting to see if a strong PD community builds here. Hope so. There was a wonderful supportive crowd on X which helped me greatly.
nov 16, 2024, 10:19 am • 7 0 • view
Same here although my use of x declined sharply in the last year after musk and the ratio of helpful to ridiculous hate inverted
nov 16, 2024, 1:31 pm • 1 0 • view
Sounds horrible, Becca 😔. I think I was fairly lucky in that I didn’t get much hate on X. Avoided posting anything political and blocked frequently. But I know others who did the same and still got nasty stuff on their feed. One thing’s for sure…X is only going to get worse.
nov 16, 2024, 1:53 pm • 1 0 • view
I don’t think I got much hate either but I started feeling invisible - my posts got less and less traction or response. Being here has meant a mental shift from a defensive crouch to expecting fun. Fun is good.
nov 16, 2024, 2:59 pm • 1 0 • view
I never used X to talk about Parkinson’s, so can’t compare, but was actually pleasantly surprised by the number of Parkys here. This list building every day bsky.app/profile/did:...
nov 16, 2024, 1:24 pm • 3 0 • view
Numbers are looking good! Hopefully as we start to interact on Blue Sky and get used to each other’s perspectives, we’ll be able to give and get support from each other. Thanks for creating the list. Pinning these lists so that feeds are organised is so much better than the X mess 🙂👍
nov 16, 2024, 1:45 pm • 1 0 • view
Yes I’m just learning the feeds feature, very cool
nov 16, 2024, 1:46 pm • 1 0 • view
Thanks Iain just pinned this!
nov 16, 2024, 1:29 pm • 1 0 • view
Parkinsons is new to me. I'm an organist and choirmaster and have trouble with my left hand and left foot.
nov 16, 2024, 9:05 pm • 0 0 • view
I imagine that could make it hard to play
nov 16, 2024, 10:57 pm • 0 0 • view
I see you @parkinsondotorg.bsky.social !!! Welcome! You’re added to the PD starter pack!
nov 19, 2024, 3:16 pm • 1 0 • view
Woo! 👋 🩵 #Together4PD
nov 19, 2024, 8:29 pm • 1 0 • view
Here's a starter pack I made filled with people with Parkinson's. Anyone please let me know if you'd like to be added (or deleted).https://go.bsky.app/UPQMXtK
nov 19, 2024, 8:05 pm • 0 0 • view
Is there a feed for the hashtag? Happy to make one if not (makes finding posts easier)
nov 16, 2024, 2:05 pm • 0 0 • view