Neurodegenative Disease Support

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This community is a gathering place for all those affected by neurodegenerative diseases. Patients, family, friends and caregivers are welcome. Share info, ask questions, or vent about your day. Whatever you'd like to talk about, we're here to listen.

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We follow the Mastodon Code of Conduct in this community.

Please be kind and supportive as you interact with others.

Do not ask for or offer medical advice. This is a community for support and encouragement only.

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founded 2 years ago

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[email protected]

ZenGrammy

Any thoughts on getting this community rolling? (lemm.ee)

submitted 2 years ago by [email protected] to c/neurodegdissupport

6 comments fedilink hide all child comments

I tried posting on a Discord for people with/caregiving for those with dementia. Got a nibble of interest, got pinned by the mod, wrote out detailed instructions on how to get on Lemmy and find us… Possibly the geek level killed interest.

The Discord is pretty quiet, except for incoming bot posts, an IFTTT feed directly from r/dementia to the Discord. (It's one-way, we can see them on Discord, but they can't see us.) Is it worth posting in Reddit, do you think? I'm wondering if I even mention Lemmy, whether I'll get permabanned from Reddit.

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[–] [email protected] 3 points 2 years ago (1 children)

I think that communities like this are just slow. On reddit, I saw the most activity around articles surrounding the condition. You have to remember that Lemmy itself is just getting going. You just need to keep some activity here until you get enough people to make the community flourish. If when people find this place, they don't even see posts, they'll think the place is dead. It's why I'm trying to find as many parenting articles as I can and post them on my instance so when the parenting stuff spins up, people will know I want to welcome them and I'm still here

[–] [email protected] 2 points 2 years ago (1 children)

Good idea—secondary sources! ZenGrammy & I have been messaging mods on Reddit; I've posted to a dementia support Discord, and to a Facebook group just getting started. I'm still stumbling around a bit on Lemmy—as I guess most of us are. It takes a little persistence, and willingness to forge ahead through the moderate learning curve. (Not as bad as I thought, btw.) And a willingnes to say "meh, must be a temp glitch," and try again later, or through a different app.

[–] [email protected] 3 points 2 years ago (1 children)

I'll throw a link into the MS discord server I'm in. Couldn't hurt

[–] [email protected] 2 points 2 years ago

Many thanks!

[–] ZenGrammy 2 points 2 years ago (1 children)

I appreciate the help. I'm open to any ideas to get this community to a more active,state for sure. I know that if we post regularly in here we increase the chances of people already on Lemmy seeing us when they sort by new posts.

I know that some posts have been auto removed for suggesting Lemmy on Reddit, but I'm not sure about bans. If you're active in a subreddit over there it may be worth it to pm the mod and see if they;re interested in checking it out or maybe partnering with us over here if things continue to go south on Reddit. I'm happy to share this space with anyone and add Reddit mods as mods here if they'd like that.

I wish I hadn't already deleted my Reddit account that had 13 years of history on it. I'could have helped out over there.