ALS isn't your entire health story

Don’t think of your ALS clinic as your medical home. It’s likely to be too far and too difficult to get into for that to work, even if it were appropriate to get all your care there, which it’s not. Neurologists, physiatrists and P/OTs aren’t the best resources for non-ALS-related health issues. But you still need to address something like a possible infection promptly, because your body is less able to deal with infection when it is relatively immobile.

Given the dangers of respiratory illness, especially if you are immobile and/or if your breathing is already compromised, it is wise to avoid ERs and urgent care centers if possible. Such facilities typically have little experience with ALS, or time to consider all your risks, so their handling and protocols could expose you to other harms, such as dislocated joints. And, of course, most people in health care these days, even clinicians, are not wearing masks to protect you from Covid, RSV, or influenza.

If you like your PCP or primary clinic, ask about options you may not have used, like e-mail, video visits (telehealth), phone conversations, for advice and rx when an in-person visit is not needed.

Later in the disease, if your PCP is not as accessible as you would like (check if they do video; many now do), many communities have geriatric nurse practitioners, who have Master’s degrees, or even physicians who make house calls. There are also “on call” services in some areas for house calls and certainly for telemedicine, but it is best to see the same people as consistently as possible since your medical situation is more complicated than others.’

In a pinch, though, there are many 24/7 telemedicine networks, so if you need to "see someone" at 3 am, there is nothing wrong with using 3rd party telehealth to do so.

As discussed on the Emergencies page, a trip to the ER is a risky proposition, and everyone should discuss beforehand under what circumstances, if any, the PALS wants to go for it.