9. We need to educate patients/clients/customers/consumers on how to relate to their doctors and get their questions answered without dissing the hardworking individuals who study and train for up to 12 years after high school graduation to qualify as neurologists with a movement disorder specialty so we can consult them about maximizing our health. We also need to teach these patients/clients/customers/consumers that they may terminate any relationship (with medical personnel) that is causing them stress and anxiety beyond their PD symptoms and move on to another until they find one they can work with.

10. We need to educate doctors, especially neurologists, that PD is a global brain disorder, but we retain our full intelligence, at least at the beginning and in many cases for as long as we live, and that we are adults capable of making choices for ourselves. I have recently spoken to the internal medicine residents at JHU, who are destined to be primary providers for many patients. It's been reported to me that they loved the presentation given by my internist, my husband and me because they learned so much about how PD feels and how insidious is its onset. We need more patients/clients/customers/consumers seeking such opportunities.

11. We need to change the king-of-the-mountain status of pharmaceutical companies and know the reason why a new drug is so costly and why they can get away so much secrecy about their clinical trials results and the true cost of research. For example, I was prescribed Requip XL, for which the mail order pharmacy bills me and my insurance company $959 for a three month supply. Sure I have the best care, my friends keep observing, and the cost of my PD drugs to me and my insurance company has reached about $15,000 a year. I wonder if dogs with RLS pay that much.

12. We need to press our educated doctors and our educated patients/clients/customers/consumers to make it a priority to get volunteers into clinical trials and other research studies, because the primary cause of the time lag in testing new treatments is lack of patient volunteers. It seems to me that the most likely tool for that effort would be a PD Patient's Research Bill of Rights as part of the law of the land, with enforcement funded in all jurisdictions by all powers of justice.

13. We need another Bill of Rights for PWPs in extended care facilities and a certification system for those facility managers who have sent their staff to education programs on proper protocols for care of PWPs (modeled on Bill Bell's NWPF).