A few random tips that make life easier with ALS
Go easy on yourself and your caregivers. It's frustrating from both sides. Keep a sense of humor.
Once you lose muscle tone in your ankles, Sleep with your legs bent over pillows so your feet are flat. The muscles you had are no longer enough to hold your feet up, so it can cause pain, and sleeping with my feet flat really helps me.
Also get AFOs (ankle foot orthotics) when you start tripping. They don't need to be prescription, just get them from an online medical supply store. The rx ones take a few appointments and cost about $450; the ones off the shelf start at $20.
Once you get a feeding tube, crush your pills with a mortar and pestle. Check with the pharmacist, because not all meds are crushable, but most of the time there is no need for liquid medications. Tell your doctors and your pharmacy that you need meds that can be crushed.
If you're of child bearing age, get a Mirena IUD. People with ALS have enough to deal with without periods (The progesterone lessens or stops your period), not to mention babies!
Consider a sheewee or similar device if you're still able to use your arms.
Female urinals are the best way to pee if you're immobile. (yes, i use one now) There is no reason for your caregivers to have to hoist you in a sling just to pee.
