I was dx when I was 27, I’m 35 now. Though looking back I think I had it at least since puberty.
Right before the pandemic I was in a similar spot w my health. It’s rough. I would say I was roughly at EDSS 3-4, and I could feel myself slipping further. I won’t list my symptoms. Physical limitations were starting. Mental limitations where huge. And so much pain.
The pandemic was hard but brought me amazing gifts.
I’ve been off any medication (ocrevus) 3 years now. I feel 20 years younger. I’m on fire mentally physically emotionally spiritually sexually. I feel like the luckiest person alive. But I also think what worked for me will work for others.
It’s not all puppies and rainbows.
It takes work. It’s not for the feint of heart. It’s no guarantee.
I’m happy to share w folks. But I will not discuss it further on HN.
> Yes, emergency rooms are a marvel of modern planning and materials.
Additionally, they're not good enough.
I've helped a friend go through a traumatic ER experience where she suffered 3 strokes and they released her from ER 3 times saying she was fine before she called me for help. We got her psych-eval'd so that they couldn't release her for 72 hours, so they had to run tests, and lo and behold, they did the CT that showed she had 3 strokes. This was at a world famous hospital.
Sadly, this isn't an exceptional story. Most folks don't believe it until they've experienced something like this personally. While I hope most people never have to experience this, we need more people to understand that this is a real problem.
Anytime you're in a hospital, make sure you or someone close to you (ideally w legal authority to make decisions on your behalf) can fight for your care.
Point is, yes they are amazing compared to an alternative of nothing. We have come far. But we can do better. They are by no means a paragon. Pick any part of healthcare, and there's room for improvement.
This reminds me of the odd property that bends in a river are separated by about 6 times the width of a river. And this seems to happen pretty often in nature.
Way back in school they'd issue this in the form of a question to undergrads just to see how they'd model it / try and answer. I'm not sure if it's understood why the number is '6'
I worked at JPL in 2007 as an intern in the planetary sciences group. Dysfunctional software to say the least.
TL;DR ... if you hear the words 'IDL' Run!
All of the analysis was done using IDL (interactive data language) which was a bit similar to matlab ... but seemed to be written by non computer scientists ... a big issue I seem to remember is a bunch of weird state accruing in your program (lots of global variables). It was also used to construct GUIs (think java widgets).
What was icing on the cake though was the licensing. Each version had major incompatibilities, and the software was privatized a while back ... and sold back to NASA in the form of a network license (per version!) w only so many seats. So people's workflow would be to come into the office, see if they get a network license, and if not 'do other stuff' (unclear what that might be since the primary work was analysis). Then people were 'supposed to' give up their network licenses for lunch for a reshuffle. (So if you missed the morning window ... you'd work a bit into lunch to try and get a license for the afternoon). Craziness.
When I learned about all of this madness, I found a way to get a student license / compile what I needed for mac os. (Which was still recently *nix based at the time). As a result ... I actually got something done that summer, which seemed to amaze my PIs.
Since I surmounted one impossible feat, they asked for another. A 'competing' research group had data they wanted, but in an unknown proprietary binary format. They asked if I could crack it.
If the mountain of evidence hadn't convinced me before then, that really convinced me that these folks were really getting hindered by their use of technology (and bureacracy! and the political forces being grant writing!)
The thing that tickled me about that ask was they didn't understand how difficult it could be. And the thing that made me giggle was that it seemed like the cherry on top was there was likely to be a different 'endian-ness' btw their sparc servers and my mac.
Oh!
And heaven help the poor soul who was 'the IDL person' in the department. They never made eye contact in the cafeteria and seemed to eat really quickly. Everyone wanted some of his time. I ran across several heavily curse laden comments in the codebase from this person. That was probably their only salve. Also made me giggle though ... they were funny ... and probably on every person's computer in the dept though I doubt any of them had read the code enough to spot them.
I agree IDL is a poor tool. However, it is used widely across universities and research laboratories for space science and earths science and this is not problem exclusive to NASA. Yes, many people use Python, R, or Julia (we use Python in our lab at NASA) but there are people in science who get stuck in their old ways.
That said, this article reads like he's from a software engineering branch, not a science group.
- HEADLINE: External monitor that 'just works' w a laptop, including window management across desktops
- DESCRIPTION:
Right now plugging in an external monitor vs unplugging and walking away from my desk results in a 'shuffle'. All my windows get strewn across the desktops seemingly at random. And even then, ALT+TAB mis-reports which windows are in which desktop. So tabbing to a window results in nothing ... but then that window will show up on the space it should've been.
This is to say nothing of the display drivers that I need to use to get the external monitor working. Just mirroring, no fancy resolutions here. And 1/10 times unplugging my monitor will result in a black screen on the laptop.
There was talk of the go team deciding on a vendoring paradigm. I don't see any mention in the release notes. Anyone have ideas/updates on how much closer we're getting to an official vendoring decision?
Pachyderm is git for data. We work hard to make sure we can store data of different types (binary, text, json) efficiently. We also work hard to give you good mechanisms to read the data in a distributed way. I'd be curious how this suits your purposes.
While I can see how a git-based filesystem can help with some use cases, does it do any kind of indexing at all? I see that the FAQ recommends exporting the data from Pachyderm into PostgreSQL, which leaves me where I am now.
I can see it getting addictive
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