The Price of Ignorance...

[parkins1]

Despite everything you have been told or taught, very little is known about Parkinson's Disease and the price is paid by the patients - all 1,000,000? 4,000,000? 8,000,000? We don't know even the number afflicted in the US not to mention the rest of the planet.

We do know the price, however. The loss of one life after another to a slow, steady erosion that lasts for decades. It is tragic to all involved and costly to society in both money and loss of some of its most talented members.

We know little about the disorder. Neither cause, course, nor cure has come to light despite two centuries of trying. The very definition of the disease has shifted as symptoms were added over the years. However, no real progress occurred until the discovery of the role of dopamine and the use of levodopa forty years ago.

Little more has been learned since and the discovery has proven to be a mixed blessing. Scarce research funding has been diverted into a cul-de-sac in pursuit of a movement disorder when it is so much more.

William Langston, MD, is one of the top Parkinson's researchers in the world. Writing in the Fall, 2006, newsletter of the Parkinson's Disease Foundation, he made similar points in an essay entitled "PD: More than a Movement Disorder"http://www.pdf.org/en/fall06_PD_More_than_a_Movement_Disorder-

"What does this mean for our understanding and management of Parkinson's? I believe it means that we have been defining Parkinson's too narrowly, and by so doing, have been restricting our investigations too much upon one part of the brain - the dopamine-producing nigrostriatal system - at the expense of other crucial areas of investigation. Put bluntly, it is increasingly clear that "parkinsonism" - the motor aspects of Parkinson's - is only one characteristic of what is increasingly becoming seen as a multifaceted and complex disorder. No person who lives with Parkinson's (PWP) needs to be told this. It is their reports as much as anything else that have been prodding Parkinson's specialists and researchers to look beyond their natural "turf" - the dopamine-producing nigrostriatal system - to examine other areas of the brain and body."
-
"How precisely we proceed from here - what new studies are needed, what symptoms we should be studying, how we can connect the dots among them, whether in fact we need to rename Parkinson's to redirect attention beyond its exclusively motor symptoms - is far from clear, and will require the attention of scientists from a variety of specialties and viewpoints. What is clear is that our concept of Parkinson's must change, perhaps radically."
-
"We need, among other things, to broaden the clinical definition of Parkinson's to include all of the syndromes described in this article along with depression, anxiety and other problems that are commonly reported among people with the condition. This will serve as a constant reminder that we need to look at our patients as more than just victims of a failing nigrostriatal system, and look at a variety of other symptoms and signs - many of which do not traditionally fall within the purview of the neurologist."

It is this need to challenge essentially everything we "know" about PD that has driven this work. The culmination of a three-year collaboration between two people battling PD on opposite sides of the globe - Richard Everett, lay researcher and administrator of this site, and Anne Frobert, MD, the resulting picture of PD is a rich one. It is the most comprehensive yet offered and we ask the aid of the medical and scientific communities in developing a cure in much the same way as Dr. Parkinson began his pamphlet two centuries ago.