In the last month, I've had conversations with 2 people with PD for more than 10 years; both well known PD advocates on this very board. Both of them have been told by their long time doctors, MDS specialists, that they suspect they don't have Parkinson's, only to recant after more investigation. Yes, they do have PD. No, the PD is not progressing as the textbooks would suggest.

What does this mean?

It means no one truly knows what Parkinson's disease really is.

How can we cure what we don't understand?

Until we understand, all we can do is care. We need to be spending more time and money caring. For 50 years our money spent for understanding and curing has only produced more questions - we need to continue on this trajectory, but in the meantime more and more of us are left to wander and wonder on our own in the wasteland that is Parkinson's disease.

My own solution: send all of our research dollars to MJFF to find better treatments and eventually a cure. Spend just as much time and money helping those of us who are living with a disease that is misunderstood and destructive to those with PD and their family and friends.

We have been let down by the establishment. It is time for the patients to be heard.