Parkinson's, Bluesky, community and [heavy-handed emails]
Fresh potential for a positive support network
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It has been a few weeks since I've posted on here, and the longer I leave it the more I feel undue pressure to make my next update good.
So, to ease that burden, here are a collection of a few unconnected thoughts that I've been having lately. (I also have four separate posts currently in drafts, so expect more regular updates to follow.)
Plus, I'm excited! Certainly more excited than I was last week.
You may have seen the news about an app called Bluesky which has seen a surge in new users signing up to it over the past week.
This is thought to be the result of disgruntled former Twitter/X users seeking new pastures in response to activity on the platform around the US election, which owner Elon Musk sought to influence so heavily.
Full disclosure: I uninstalled the X app several months ago, although I have not deleted my account. I also used to work at Twitter from 2015 to 2017.
The point of this post is not to debate the morals of continuing to use X, but more to showcase my early optimism about what is being built out of its rubble elsewhere.
Bluesky's slogan includes the phrase: “Find your community among millions of users, unleash your creativity, and have some fun again.”
It's almost word-for-word what my objectives were when starting this newsletter.
In the deluge of emigrants from X, a number of them are members of the Parkinson's community, simply looking for a kinder setting to find and connect with each other.
Yesterday, I sent out the following post, and I've been so pleased with the response to it.
In less than 24 hours, I've found I've connected with more than 40 new people from the PD community on a platform which I’d rarely considered previously.
Among that number are people with the condition, as well as academics and researchers who can share interesting new updates in an arena which just generally feels grown up despite being newer than most.
Today, Parkinson's Europe sent out its first post on Bluesky and there seems a wider appetite for greater connection and shared experiences.
Like any social media platform, you can't predict what it will turn into, and many of them end up changing their mission. But at least for now, there feels a growing momentum behind the Parkinson's community on Bluesky.
I'm going to email Parkinson's UK and my hospital's neurology unit to suggest they open an account, and have also undertaken the manual task of curating a list of opted-in people from the PD community who want to be more easily discoverable. Sometimes you have to help build the things you want to use.
I've said previously that Substack reminds me of the Blogger and WordPress scenes from 15 or so years ago.
Bluesky also feels like those early days of social media, and the two platforms may prove to be a nice complement to each other in that way.
The follower numbers are smaller, the reach is less, but it all feels very deliberate and intentional in a way that many platforms don't.
People aren't sitting on the tube doom-scrolling through Substack newsletters. They receive them because presumably they have a genuine interest in reading them.
Neither platform offers a smooth onboarding process. It is all quite manual, but therefore the results feel more meaningful.
It all feels quite the opposite of Threads, which may well be putting on a million users per day, but it still feels like a place waiting to happen.
Bluesky, at least in the small world of the online Parkinson's community, feels like it is happening now.
And while posts on research and other information and advice will be very welcome, the thing I am more excited about is the prospect of being part of a community which shares regular non-PD updates.
A live feed of new ideas, accomplishments, and plans being made might be be the regular reminder many of us need that, although more difficult than it once was, life goes on and you can live well.
The search for a unifying hashtag
Another thing which becomes apparent when you float around various online PD forums is that there is no common hashtag which people can rally behind and use for discovery.
#Parkinsons feels too blunt.
#ParkinsonsDisease is even worse.
#YOPD is niche and vague.
In a professional capacity, I would advise a client to make their hashtag a call to action. Something active which can be used in the context of a sentence.
Therefore the above reply from Carla on Bluesky seems the best option.
Let's try and make it a thing.
Recommendations on Substack really work
A quick observation that recommending a fellow newsletter writer on here seems to have a direct impact on their subscribers.
Almost too well.
I have less than 30 email subscribers, but the conversion rate from being shown recommended newsletters when you subscribe to another is very high.
Clearly some of these are accidental subscriptions. I don't think nine of my subscribers were really seeking the in-depth NFL feature writing at Go Long.
With apologies to the great Tyler Dunne, I've taken him out of my recommendations to avoid confusion, but left health tech reporter and fellow parky Rory Cellan-Jones in there.
Leave me a message in the comments below if you're interested in a mutual recommendations exchange.
When email marketing goes wrong
A fun one to finish.
I was recently exploring the options on my Gympass (which I have access to as a work benefit) and narrowed my choices by clicking on a few different areas of interest.
This process triggered the following email to be sent out.
I think this speaks for itself.
I saw the funny side rather than taking offence, but it's easy to see how this might be upsetting for someone to receive.
It is staggering that as we approach 2025, some major companies are still deploying such heavy-handed examples of automated marketing.
Reason to be optimistic this week
AI protein-prediction tool AlphaFold3 is now open source
If you made it this far, thank you for reading!
One final thing…
A main reason for writing this newsletter at all is to find and connect with people in a similar position.
YOPD is a niche condition and potentially a lonely one for people without a physical or digital support network.
Please feel free to share this your networks to help it find someone who may benefit from being part of a relevant community.