Some years ago I volunteered in a certain project as a patient representative. I wondered for a long time though how I could possibly contribute. The other project team members were healthcare professionals.
After giving it quite some thought I realized I am someone who actually knows what Parkinson’s disease is and what it feels like. As a matter of fact I have that very disease. And I decided I am the leading expert on myself. So I joined the project to provide an update on the disease for the professionals. How else could they know? And the collaboration turned out to be very smooth. They received experimental knowledge; in return I received the latest information. It was also very helpful that the project team also involved another patient representative.
I’ve had Parkinson’s for about six years and consider myself an active ‘Parker’ as a member of the Parkinson group of Central Uusimaa in Finland. Hardly a day goes by without us discussing matters larger than life. Our greatest wonder is simply where this disease comes from. That has been studied for a very long time without a conclusion. Almost every week we get to read on new promising studies, which claim that the round, green pill that will solve everything is almost ready. It is round to make it easier to swallow and green because it is a relaxing color. For a while we are all truly excited. Shall our life sentence come to an end?
Weeks turn into months; the headlines disappear and one more study sinks into oblivion.
But one shouldn’t worry: New studies appear every week. Promises are promises. Eventually we have so far had to conclude that there went yet another study.
I am slightly concerned. We would need updates on these studies. And if such updates were available I would really wish to read them in reports understandable to the interested layman.
This is not just for myself but also to my fellow Parkers.
A Finnish proverb says: With knowledge comes pain. I would however appreciate the knowledge. My Parkinson’s takes care of the pain.
Seppo Nieminen is a Parkinson’s patient active in the regional Parkinson’s group of Keski-Uusimaa in Finland. He is also the author of “Sepposen selällään – pakinoita Parkinsonista” (Short stories on Parkinson’s, in Finnish).