Gayle
You are so right about insisting a cause of death include the main culprit; , i.e. "Parkinson's" be put on death certificates. It should be coded and accounted for the same reason as diagnoses are done.

I remember when I worked for the local Veterans Administration hospital . I worked as a medical transcriptionist. There was a position for one person to file charts, and one for coding diagnoses and other duties. But there was one position only for a specific disease or illness, and that one person had to handle and review every chart that gave either an admitting or discharge diagnosis of "cancer."

You see, it is the law that cancer must maintain a registry. Every chart that indicates that a patient might or has confirmed the patient as having cancer must code that chart a special way so that such information can be retrieved when needed. This info might. Include the patient's name, where they live, gender, age, and primary site of the cancer. Think of how important such demographic and personal information might be in studying me about cancer.

WE NEED A LAW FOR A SIMILAR REGISTRY FOR PARKINSON's DISEASE!

As it now stands there is no registry, which would be invaluable in seeking to name biomarkers, to indicate geographic locations where Parkinson's is more prevalent, or many other leads to finding answers about this mysterious disease.

We attempted to get a registry through a bill that would have counted PD and MS (multiple Sclerosis) in a similar way. However, it got lost in the political bureaucracy game and we are still trying to get a PD bill to build a database that will lead us to better therapies, and maybe even a cure.

There are some states that have started their own state registry. Check with your representative of PAN (Parkinson's Action Network) the Washington-based organization that speaks as the unified voice of people with Parkinson's and their caregivers to see how you can help.