- Nov 27, 2019
I wish I didn't feel it is all for nothing. I am going to see my ALS team later this week. I am an eight hour drive from them. We are going to be discussing my receiving a feeding tube. Last month we had a video visit, it did not go well. I didn't want to hear what he was saying, and at the same time I didn't feel as though I was being heard. This boils down to a trach. I am against one, and that is all I am hearing. I feel like I am going to battle. They are so quiet and seemingly knowledgeable the sheer intimidation factor alone leaves you with disadvantage when wanting to self advocate. You dare not bring up trial medications AMX0035,tudca,NurOwn. The Look of boredom you receive is palpable . I hate going to the Dr's, when there is no hope to be found there. Thanks for the ear.