You have to be smart and you have to ask questions. That's true in life anywhere. You have to be your own advocate, even with ALS, and there is only so much energy and so much room you have, but the reality is, I would say, you have to go after your own treatment and your own sense of taking care of yourself. You really have to manage and find your way through that system.
There is a lot of stuff online, and there are doctors in the States, but I just feel that we haven't coordinated everything. The communication, I feel, is not strong. Most of the communication is so depressing--seriously, not that I'm a bundle of joy here. It is so depressing that you don't get a sense that there is a forward movement of advocacy for real change. You feel lost in the system and you don't feel there is a real forward-thinking movement and approach to shift this to a new place.