Lisa,
I am Patty from Chicago and I am so sorry to hear about your mother, this disease seems to take over the body so quickly and even when there is some time, it is never enough. It seems like the time you are given, you are trying to figure out what this disease is and before you can get your wits about you, it has already stolen from you.
I am not sure where in the Chicago area you are but if you would like some in person support from someone who is going through the same thing, just let me know, maybe we can meet for coffee.
I am also sorry because I only saw today that you responded to my introduction and were looking for doctor recommendations in the Chicago area and now it is too late, though I see you brought your mom to Mayo and I was regretting that we did not try that.
Patty