u/MadCybertist

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!