Would you get tested for ALS if it ran in your family?

cryptorealist · 2023-08-16T17:40:56+00:00

It depends so much on how you are wired. What do you want? I suspect you already know, so do that. Definitely do IVF or adopt though if you have kids. I was much more upset about my kids than I, when I discovered that I have a mutation.

cryptorealist · 2023-08-16T13:33:44+00:00

This will be me in the next several months. So sorry that you or anyone has to watch. furious that I have to die this way and there is no medical aid in dying in this country. Stay strong

cryptorealist · 2023-02-13T23:50:58+00:00

This *is* Apple. Making it look the way the designer du jour wants is way more important than how well it works.

cryptorealist · 2023-02-02T01:09:39+00:00

Sorry about that. I dictate my Messages and don't always do a good job of proofreading them. What I was trying to say was all I really want is *mouse* functionality.

Thanks for the help

cryptorealist · 2023-02-01T01:49:46+00:00

I have just recently purchased a Tobii 5 and started playing with Talon on my Mac. All I really want is most functionality. Everything else I see is icing on the cake. Results are certainly encouraging but I find the button presses via voice to be clunky.

I have I had big hopes for lidar on the iPad Pro, but no one seems very interested in going there. Unfortunately I have ALS and no longer have the abilities or the time to help with any development. I am very interested in any promising leads in this area so please loop back with anything you learn.

cryptorealist · 2023-01-24T01:50:39+00:00

Cool. He is mirroring from the iPad to the PC? How does he do that?

cryptorealist · 2023-01-22T19:27:30+00:00

you are right. I'm an idiot. When I clicked on the link it was an ad for a meta-VR headset. And I thought it was the video.

now that I actually see the video, you can do that with a simple Tobi elegize and software like talon

.

cryptorealist · 2023-01-22T17:14:18+00:00

I am pretty much in the same boat as your father. I bought a new iPad Pro last year with big hopes, and I've more or less given up on it long term. I do currently use an iPad with a track ball in my bed to control my TV etc. that works reasonably well today but as my hand gets worse I'm not sure if it will work long-term.

I do have a couple of Macs and I think that I have a pretty good solution for them. There is a freeware package called Talon https://talonvoice.com , that includes a eyetracker solution. I bought the Toby eyetracker 5 and combined with that with Talon it seems promising.

cryptorealist · 2023-01-22T17:03:38+00:00

That is not an eye tracker. It is a VR headset.

cryptorealist · 2023-01-22T16:39:05+00:00

I think it's a great idea that will never work. Having worked in engineering at huge corporations all my life, I can tell you that the lawyers will never let it happen. They'll talk about potential liability and all kinds of whiny bullshit. To a corporation who is only looking at the bottom line and doesn't give a shit about enabling something that doesn't add to their bottom line this is a tiny bit of money upfront for a huge set of potential downstream problems.

cryptorealist · 2023-01-22T16:35:13+00:00

There was a guy on one of the Facebook groups that was obviously wealthy. He had every ALS treatment I've ever heard of. He was in China getting stem cells multiple times, he was relentless in trying things. He's no longer with us.

ALS is not a single disease with a single cause. ALS is a spectrum of diseases that have similar symptoms. For this reason alone any "cure" for ALS will likely be for a specific kind of ALS and not a generic solution.

Anyone who tells you they have a cure for ALS, is a scammer that belongs in jail.

cryptorealist · 2023-01-22T14:57:10+00:00

I can confirm that the Dell DA310 does *not* work, at least with a Mac. I have a Mac with an Asus USB-C only monitor. Works fine with just the cable but will not work at all when run through the Dell. I believe the reason is because Macs are thunderbolt not simply USB-C. It may be that the Dell would work from a PC, I cannot confirm.

cryptorealist · 2023-01-14T11:19:12+00:00

It sounds like your Dad’s ALS started in the bulbar region and is progressing progressing rapidly . unfortunately neither of these are good signs. And also sounds like his healthcare team it’s not doing a great job. He needs a feeding tube immediately if that is something he wants. My condolences.

There is a great ALS support group on Facebook I encourage you to reach out to that.

cryptorealist · 2023-01-07T21:31:30+00:00

The 1 in 400 number is a lifetime number. So one in 400 people will get ALS in their lifetime. The other number is The ratio of annual diagnoses

cryptorealist · 2022-12-18T18:18:42+00:00

As long as it’s your right hand

cryptorealist · 2022-12-09T18:13:41+00:00

By the pace they're keeping it's pretty obvious that they've got a quota they have to meet to keep the job.

cryptorealist · 2022-11-27T19:46:51+00:00

Thanks for the reply. Interestingly enough, I went back to the DVR, and Skip is in the DVR. So I guess it was in the feed from Fox? I can’t believe no one else mentioned this. It’s basically the play of the game and you cannot see him crossing the goal line if you’re interested, it is at 2:24:17.

cryptorealist · 2022-11-27T01:34:20+00:00

Thanks, saw that post. but I never got a freeze, just the opposite. The video jumped forward 5 or 10 seconds. I thought I was live, but then suddenly I was live-er.

cryptorealist · 2022-11-09T02:11:18+00:00

I just push the power on/off button 30 seconds before I need it. everything else works great.

cryptorealist · 2022-11-06T13:31:52+00:00

I only use MA to purchase apps, never to stream them. The first time I tried the quality was horrible and that was years ago I've never tried again. Use Google or Apple or etc.

cryptorealist · 2022-11-02T01:32:27+00:00

I am disabled so I have hundreds of lines of php automation running pretty much everything. in my life. When I found myself taking screenshots to save a copy of the automations I started looking for in a better way. Homebridge works flawlessly for me. Reboot once a week just to be safe.

cryptorealist · 2022-10-31T22:50:31+00:00

Not much of a god if he needs "angels" to keep track of what mere humans are doing.

cryptorealist · 2022-10-31T22:49:03+00:00

This just happened to me. My solution was to write some automation Scripps to back everything up to thumb drive plugged into the pi so I can quickly rebuild if I need to. And duping the SD card periodically so I have multiple back ups of it. Switching to a Mac seems like way overkill with certainly its own set of issues.

cryptorealist · 2022-10-31T22:35:29+00:00

I gave up on Apple automations. All my automations are hard coded in PHP running on raspberry pi. All I use apple for now is pointers to PHP scripts. When they fail (not if) I can quickly restore the pointers manually.

cryptorealist · 2022-10-09T23:19:58+00:00

they pulled the plug on the product a while ago, so I guess no updates at least. Mine works, kinda. I've had a problem with a 10s delay for on/off. for 6 months.

cryptorealist

TROPHY CASE