How can we as advocates gain (earn) greater acceptance and respect in the scientific community? It would mean a lot of effort but in my honest opinion, we would become more powerful if we were to:

  • 1. Become highly educated in the science of Parkinson’s disease. Few of us will be neuroscientists. But we can become better educated on the latest treatments in clinical trials. And we can study to have a better understanding of PD.
  • 2. Pursue training to be on an Institutional Review Board (IRB). It is possible. My cousin, a school Librarian, went through that training and is now on an IRB. How great would that be to have PWPs sitting on IRBs for Parkinson’s trials.?!
  • 3. Meet with and make alliances with people in health care and/or politics. Search your community and local universities and hospitals for committees that may impact PD. Become a member.

If we were to accomplish these tasks, we could become true “members of the team” with a real “seat at the table.”

getting respect