u/MadCybertist

So I was diagnosed with ALS and can no longer really move my hands and arms very freely…. But my home lab needed a massive overhaul. It’s a Linux box (Unraid) with 144TB HDDs, 8TB NVMe, in a big box (Define R5).

I wanted to keep the HDDs (it’s like $5k alone in today’s market), case and SSDs. Replacing the rest. So we had to disassemble the entire thing, clean it out and spruce up the inside of the case. She’s never touched the inside of a computer before so had to walk her through what to remove and what to leave. Had to get all the old PSU wires out. We added another case fan as well. Get the 1080Ti out as I’m going without a GPU for transcoding this time around due to quicksync.

Then had her build out the new mobo (cpu, cooler, paste, ram, SSDs.

That’s where we sit at the end of the evening…. Tomorrow she has to move around the standoff screws, install the mobo, install the PSU, then get all the cables routed and plugged back in.

I can’t talk very well so it was quite the challenge - but she was a damn champ. Just wanted to brag a bit how well she did for someone who’s never really touched a computer other than a keyboard and mouse.

Been an apex player since it first launched. I mainly play ranked now and I only play solo. I play Crypto and I’ve got a legit 4k on him in ranked but no 20 bomb (18 kills). My favorite badge is the kill 4 within 20 seconds. He’s the only legend I have an heirloom on as well (back before the universals). I’m a diamond player as a solo crypto (which is a challenge to say the least but I love it). Highest I’ve ever got was D2 a lot of seasons - I can’t break into Masters. I also can’t talk so no mic during all this lol, and been playing on the SW2 since launch haha. I’m a glutton for punishment.

Unfortunately I was diagnosed with ALS which is progressive and terminal. Part of it means I’m losing my ability to move my hands and arms so fighting competitively has become a challenge. Other issues are my heart through arrhythmias and conduction as secondary issues to the ALS. This means as I get locked in and excited during a good 1v2 or 1v3 my HR goes crazy (150+bpm) and my extremities start to go numb.

Today I was doing a 1v3 (no clue if I could have won if all was normal) and I almost passed out in my power chair lol, my HR spiked and ended up dropping my controller and of course died in game. Damn near died IRL lol.

So today marks the day I finally hang up my crypto and have to step away from Apex for good. Gaming is a massive part of my life, and I plan to play games until this disease takes me away. Before Apex I was a Dark Age of Camelot player (11k hours) and Destiny player (9k hours). As you can see I normally pick a game and stick to it lol.

I’ll be doing strictly single-player games now. I’ve been doing quite a few of them lately as I’ve gotten worse and I’m having fun. I’m insanely looking forward to OOT remake and plan to make that my first single player game I’m going to actually beat. No real reason for this post other than to just vent a bit of sadness for having to officially hang it up.

Farewell Legends.

Terminally ill and currently have a Unifi setup with a Dream Machine, 4 APs, and a bunch of switches. It all lives in the basement which I cannot get to any longer. It’s also all rather old (6+ ish years now).

I’d like to do 2 things here.

1. Upgrade the equipment. The APs are the built in dream machine (I’m just counting it), 2x AC Pro, and a U6 mesh (just counting it again). The dream machine is the controller. Then a handful of switches. Nothing too crazy honestly. I’d like to not have things go bad on her any time soon so I’d like to spruce it up. In much less worried about the switches and thinking about upgrading at least the dream machine and the 2x APs. They are ceiling mounted but the new ones aren’t required to be. The U6 mesh of course isn’t.

What’s some good suggestions on what to pick up nowadays. Haven’t been following their releases lately.

2. A good idea on how to sort of write this up / dumb it down for her so when I’m done she can have something to reference.

She enjoys the setup. I also have a home lab which has my media server, our home automation, etc. that write up is for another day though. She wants to keep it, likely partly just because it was a passion of mine. But I don’t want it to be hugely overbearing when I’m gone.

Crypto rework is coming season 31 I think. After what they did to bloodhound I’m terrified. They about to gut my boy.

I’m terminally ill and have some equipment that I need to run if our electricity goes out. It’s a non-invasive breathing machine and charging to my power wheelchair if necessary. I have a suction and cough assist as well. Now that I’m typing this probably my medical bed as well to continue the adjustments while I’m in it.

I have NO idea where to even begin for this. I’m gonna be dead in 2-4 years so a whole home seems overkill, but my breathing machine can only last 6 hours on battery so if it goes out I’m dead as well lol. I mean obviously I’d just call an ambulance to take me to a hospital but I’m trying to avoid that.

How do I go about figuring out what I need? The only thing I know about the ventilator is:

**AC and DC Power Specifications**
**AC Power Range:** 100 to 240V, 50 to 60Hz

**AC Power Consumption:** 90 W continuous (3.75 A), 120 W peak (5 A)

**External DC Power:** Can run on external DC via optional power supply or external battery systems.

I’d prefer one of those larger battery generator types but I’d get whatever would be required.

I’m terminally ill and have some equipment that I need to run if our electricity goes out. It’s a non-invasive breathing machine and charging to my power wheelchair if necessary. I have a suction and cough assist as well. Now that I’m typing this probably my medical bed as well to continue the adjustments while I’m in it.

I have NO idea where to even begin for this. I’m gonna be dead in 2-4 years so a whole home seems overkill, but my breathing machine can only last 6 hours on battery so if it goes out I’m dead as well lol. I mean obviously I’d just call an ambulance to take me to a hospital but I’m trying to avoid that.

How do I go about figuring out what I need? The only thing I know about the ventilator is:

AC and DC Power Specifications
AC Power Range: 100 to 240V, 50 to 60Hz

AC Power Consumption: 90 W continuous (3.75 A), 120 W peak (5 A)

External DC Power: Can run on external DC via optional power supply or external battery systems.

I’d prefer one of those larger battery generator types but I’d get whatever would be required.

Just picked up 2 to play with and plan is to swap the boot to then vs my now 12 years old (and running every day) USB stick.

Anybody else using them?

Use:
- home lab
- media server
- home automation
- 14 docker containers
- 2 VMs

Budget:
- $1500

Keeping:
- Define R5 case (need the HDD space)
- 144TB HDDs
- 2TB NVMe SSD for a cache

Need:
- 32GB ram (will settle for 16 if needed)
- CPU (want Quicksync so Intel. Could consider AMD if budget allows for Arc GPU with quicksync. Fine using like a 14th gen or the like if needed)
- MOBO
- PSU (not a cheapo)
- GPU* (foregoing unless necessary for scenario above. I’m ditching my 1080Ti)

I’d love some thoughts or ideas on any parts of this or actual build ideas. I’m open. I know prices are insane. My system is 10 years old and just want to get it upgraded.

Need to upgrade my home lab. It’s running on 10 year old hardware.

Plan for new mobo, PSU, ram, cpu, adding new nvme for cache, and then adding to the 144tb array. I’m thinking of just setting all my filament colors to the same in the AMS and letting a Frankenstein print begin for the case. Just all my left over colors merged together.

Probably go Intel this time for quick SynQ. Current build is AMD. Dropping the 1080ti for an Arc A380.

The case though will just end up blended together all my left over rolls. Browns, blacks, reds, purple, neons, white, sparkle, etc.

Probably just go with a 12 series Intel and am4 honestly. No need for the power. Just need transcode, lots of HDDs, a few VMs, and like 15 docker containers.

I have ALS and do not have the ability to speak. I use an AI speech to text program called ElevenLabs which I trained using my real voice reading it books for several weeks at night. So that is my way of communicating current so people can still hear me, and hear my actual voice essentially.

Sometimes in louder environment it’s hard to hear an iPhone speaker so I carry the Roam with me and hook my phone to it so it can play what I’m saying louder for people to hear me.

Earlier today I realized there was a perfectly circular crack that formed around the power button. The speaker is from 2024 so outside warranty but after calling Sonos (I use an AAC app on my iPhone tied to the api of my AI voice when I make phone calls) - and they granted me an exception and are shipping me a new Sonos Roam SL.

Just felt like sharing a different unique use-case for the speakers as well as a little feel good story.

I have a Note Air 4c that I just don’t use very much. It’s in perfect condition, comes with the Boox magnetic cover, as well as a few stylus options. I have the Staedler stylus, the Boox one, the kindle scribe stylus as well as the Lamy one. Has a good amount of extra tips, both normal tips and the Wacom felt tips.

All works perfect and no damage anywhere, I just don’t use it much besides reading some manga here and there but I’ve started doing that on my iPad more now so it mostly just sits.

Shipping within US for $375 if anyone is interested. If not I’ll throw it up on eBay this weekend.

NOT my design. Just wanted to share. $35 or $50 depending if you want the raw files to edit. This will be my next case I print and build.

I’m a bit different audience than most on here as I don’t game on my PC, it’s a home lab. 144tb HDDs, 8TB SSD, bunch of containers on docker, home automation, VMs, etc.

Figured I’d share a cool design I found.

When I’m ready to go on Disability what plans make the most sense?

When I’m ready for SSDI I was just curious what plans others have found that make the most sense or if anyone is here that had family in a similar situation.

I have ALS but do still work full time. Obviously as I progress at some point I’ll go on disability. I have STD and LTD at my work that pays me 70% of my income until retirement age (I’m far from that and won’t live that long so essentially the rest of my life). Once I move to LTD they’ll require me to apply for SSDI and pay me the difference basically.

When I do that, as someone with ALS, does anyone know what plans make the most sense for Medicare?

I obviously take a lot of meds. I won’t need dental or vision (won’t be able to go anyways if I did). My doctor appointments are actually relatively low though. Only a few times a year (2-4 times). Not much you can do for a terminal illness they know nothing about lol.

I do have a power wheelchair though and other medical equipment (breathing machine, suction, cough assist).

All of this said, really at any point I can also go on hospice as well which I know then takes over a lot of the meds and equipment etc. I’m more inquiring about the intermediate time between.

Thanks!