I had lunch today with a girl from my high school days. Her husband was diagnosed the same year I was and is now in end stage, requiring 24/7 care. I’m not sure how this makes me feel; grateful that it is him and not me; frightened that it will be me; guilty that I am doing so much better; or just sad that any one of us must come to this inevitable place of total lack of independence.
While we are about the same age and were diagnosed in the same year the similarities end there. Not one aspect of our shared condition is the same and yet we were both diagnosed with Idiopathic Parkinson Disease. In fact, I don’t know anyone whose treatment, presentation or progression is a match for my own. When we have pneumonia or polio or small pox there is a map that predicts the next bend in the road, or at least a pathway that has been trampled down by those who have gone before. Not so with Parkinson Disease. When I was diagnosed a decade ago, we were going to have a cure in five to ten years. Unfortunately the brain is a complicated system that so far defies intimate knowledge. The more we learn the more we discover we don’t know.
In order to find answers to the mysteries of this life destroying condition we must encourage researchers to ask the right questions. One of the most fundamental questions is “Just how many separate diseases does the diagnosis of Idiopathic Parkinson Disease cover?” Until that question is satisfactorily answered none of the other questions is relevant.
How on earth do we begin to threat a disease we can’t even define?
Cause
Guideline Summary for PATIENTS and THEIR FAMILIES
Modeling idiopathic PD as a complex illness - infections
