An Eye-Opening Experience

Last week I had the privilege of sitting in on a neurology patient clinic. Over the course of three or so hours, I was part of a team that listened to the case of a neurological patient. Given the personal nature of the event, I will only be talking about broad generalities of the actual case. Instead these are a list of the striking aspects of the clinic for me:

1. The intimacy of the diagnostic process: One patient, one family member, and, for what must be an incredibly difficult situation, a “normal” conversation about the patient history and symptoms. If I were in a similar situation, this is the team I’d want to see.

2. How much there is that science cannot tell us: Two patients can have similar visible neurodegeneration and yet completely different symptoms. A patient with quantitatively greater degeneration can have fewer quality of life impairments than one with less damage. Yes, I knew that and it’s why I was there, but in the moment you wish we knew more, and empty that we cannot offer more.

3. The trust between patient and physician: At several moments, it was made clear that if X were the diagnosis, there would be very little by way of treatment options. At that point, the patient could have just gotten up and left. Instead, the answer was something on the order of,

   I’m here for my kids, and other people’s kids, if this happened to them.

   Sure, words are cheap, but as the overseeing neurologist said, “We now know this because of the careful study of patients like you over the years.” None of that could have happened without trust on both sides.

Just an eye-opening experience all around.