I don’t think you can spend all day in a medical research facility without becoming absolutely fascinated and enamored with your own health.

I’ve been a Guinea pig at UCSF since 2012. It helps me feel like I’m doing something to help and I get to play adult science camp. I get to meet and talk to people who teach me things I won’t ever learn from reading books.

There’s something to be said for being able to hold a conversation about prion disease, just being able to riff.

But many people are there in the building for HELP. They got there because they self-advocated to get help. They fought the medical system and won—ratcheting up their issue to a research hospital. Not everyone makes it to that point. Some suffer, many die.

I’ve fight hard for my health simply because it is good for the research. I’ve said all these years we don’t win if I die, we don’t win if we don’t get answers about any stupid health problem I have.

I never let doctors slap an rx on me and call things done. I make them work. Remember, your doctor is your employee. They work for YOU.

Seeing people in various stages of various Neuro diseases (MS, for example) is humbling. Those people are heroes. They are fighters. My respect to anyone who is entering a clinical trial or research study while symptomatic.

It takes so much faith and hope to do this stuff. I am very optimistic.

#CURECJD