Make it a "living" room.
What goes in the living room? That will change as ALS progresses.
Positioning
Before getting into "stuff," ahead of a positioning page that's in the queue, a couple of important positioning tips:
- Always tilt and recline the power wheelchair back before transferring someone into it.
- When putting the sling under them, recline the seat (while holding their back in place!) to put the back portion behind them then un-recline and fold down the footrests to place the sling under the legs.
- Same principle of creating a "drop zone" for a bed — head up before a transfer, and preferably with a proper bed, some tilt backward so the transfer is cushioned (for both the into-bed and into-wheelchair transfers, quickly adjust the feet/head to comfort once the person's butt is back).
You may already have a recliner. But to have one that you can use with a Hoyer, and doze off in without hurting yourself, you'll need a "zero gravity infinite position recliner" that can go all the way flat besides helping you stand up. Golden and Pride are two major brands.
A recliner naturally makes more sense in slow progression. Otherwise, a power chair will be up soon, with better support, so there may not be any point.
Get fabric upholstery, not real or fake leather — too sticky.
Creating & consuming content
You can get custom desks to use with a wheelchair, but it often makes more long-term sense to use a floor table that the wheelchair is under, instead of next to, or a tray that uses the arm rests for stability. If you are still using your regular desk, consider articulated, attachable arm supports, which you can get on Amazon.
Depending on your abilities, you can control TVs, cable boxes, streaming devices, etc. with your voice, low-force remotes, other devices (such as controlling a streaming box with your smart phone, which in turn you can control with head control or eye gaze, etc.)
Assistive tech is a very fast-moving field these days. Ask me if you need a pointer (literally), and there are resources.
YouTube on your TV via a smart TV, streaming box, or casting from a mobile device is a great tool for finding everything from concerts to museum tours to local news.
eBooks can be set to turn the page automatically, adjusting to your reading speed. You can use a phone or tablet mount on your wheelchair or bed, that is attached to the chair or bed, or a floor stand.
Padding
Don't buy cheap cotton/foam positioning supports like you see in "senior" catalogs. They cause dents and heat buildup.
We did use sheepskin for padding under Larry's elbows in bed/wheelchair, and between his thighs and the wheelchair's metal supports.
Cervical collars
Many PALS have head drop from weak neck muscles. As the disease progresses, you will likely need a cervical collar (likely changing them out as you go).
At the beginning, a “medium density” soft collar from Amazon may suffice. Always double-check the height so there is just enough but not too much (strangling someone is not the goal). And of course, the length of the collar needs to accommodate the diameter of the person's neck. Each of these can be measured for size.
Later, more structured head support (plastic instead of foam) may be desirable. Some options to consider are the Philadelphia, Aspen Vista, Headmaster, and Trac Collar. Neck Solutions carries many of these.
You generally don't want to wear a structured collar in a power chair. The Savant is worth looking at if your DME does not have a good solution for your chair, but remember also, gravity via tilt and recline covers many situations.
Some PALS have had success with a "bed collar" (more support in front than in back) from Amazon when traveling in a wheelchair and/or during sling transfers.
More stuff
You will also need a variety of medical “aids” and supplies for the bathroom, bedroom and more.