@ Bunnkerhillbroad: ALS is a team effort. My wife, RIP, was a medical doctor with great connections, and we visited with many different specialists during the course of her disease until she died. Here's what I learned:
Very few doctors understand ALS very well. No non-doctors understand it at all. But they all pretend to understand it. A single appointment with Mayo Clinic was very, very educational. You must educate every one you meet, so they understand that it's a progressively paralyzing disease that eventually reduces the patient's ability to discharge CO2 from the lungs. A cough assist machine helps clear the lungs, but it's uncomfortable to use. We visited the ER and used an ambulance on a couple of occasions. You'll need to educate each nurse in the ER and also brief the EMTs you meet, so they understand how to support the breathing of a person with no neck control.
A neurologist is needed at the beginning. A pulmonologist is needed throughout. An internal medicine doc is needed for coordinating meds and treating depression. A hospice specialist is vital once the patient is terminal (within 6 months of death). All of these people need to understand the disease, and the IM should be willing to take a phone call after hours. An Occupational Therapist can help order the special supplies you'll need to eat and get around. A physical therapist can provide Range of Motion exercises to reduce joint pain. A massage therapist is valuable for easing discomfort in the legs.
A lot of the "care" is really not going to substantially help. Although doctors are naturally fixated on "curing" someone, there's nothing they can do except prescribe ways to reduce itching, joint pain, bed sores, etc. In the end, morphine and a caring hospice nurse become your friends. A chaplain may be appropriate, but watch out for some pastors who believe that illness is a punishment from God, and you can be cured by prayer. My daughter's church taught my child that mom was going to Hell for not having enough faith.
ALS is a family effort, 24/7. The most important thing, I think, was ensuring that the patient was able to control their lives as much as possible. After all, paralysis is about losing control, so I ensured my wife got every little thing she wanted, every whim and desire. Often, family members think they "know best" and will tell the patient what to do.
Hospice nurses come in all varieties. Many have never dealt with death before. A few have never touched a patient since school. Don't be shy. Interview and brief each nurse as they come on shift, so everyone knows what to expect. Don't be afraid to ask someone to leave if their presence is not in the patient's best interest.
Well, I hope this is somewhat helpful.
