by radeck » Thu Nov 19, 2009 9:47 am
I had pm exchanges with some of those who haven't posted yet. I had worried that they're not posting because they're thinking the state of their health could change, and wanted to encourage them to post nevertheless since the tracking is not meant to be a final, definite state of things but just the contrary, something that's very much in flux as people document their weekly changes!
To my great surprise, the two main reasons for not posting were 1) lack of time and 2) lack of confidence that they can reliably fill in the quantitative measures like EDSS, and make medically qualified statements at the other entries.
This surprises me because it should literally take 5 minutes or less to copy and paste the template into the body of a message and fill in bits of info. Wherever a poster feels the info is incomplete, he/she could simply add "Incomplete, will update at a later time". Also, thanks to SammyJo we have a very convenient and fast way to assess the MSIS.
So, I think there's a basic misunderstanding here in that the tracking thread should be seen as a conversation, where you're not obliged to make deeply qualified statements each time but just what you can contribute here and now.
These psychological barriers seem to be widespread though, since we're still missing the MAJORITY of Stanford people and have only ONE of Zamboni's more than hundred patients!