I talked with my brother today and he confirmed that neither of the two neurologists he's seen have referred him to an ALS clinic. The second one, who practices in the city where the ALS clinic nearest to my brother is, mentioned that he might want to come to the ALS clinic but acknowledged that it's a 4.5 hour drive for him and that he might want to work with the neurologist he first saw and access services that way.
I suggested to my brother that he pursue getting an appointment with the ALS clinic as soon as possible. My dear brother is such a sweetheart, but he's not particularly assertive about anything, including his healthcare. So I told him I can advocate on his behalf and try to help him navigate the system. Living so far away from him (an eight hour flight), I can at least do that.
My brother said his hands are getting weaker (he's having trouble doing things like holding a pen, opening a sandwich bag, buttoning his jeans, etc.) and he's been wondering for the first time (or at least, the first time he's expressed it to me) what will happen if he loses the use of his hands and how he will manage, especially since he works in IT. Fortunately, his company is very supportive and will make accommodations for him, from what I understand. My heart breaks into small pieces over him having to worry about such things. And I will do anything I can to help him. Maybe that's going to be figuring out what equipment or implements can be helpfult to him and tracking those down for him. Maybe it will be helping him get appointments and helping him with what happens next. Maybe I will have to move to be close to him. Whatever is needed is what's going to happen. He is so incredibly kind and sweet and thoughtful about everyone else, my brother. This needs to be about HIM and what he HE needs.