Sorry, I didn't mean that I wanted or expected ordinary people without a PD to understand how difficult it was to have one. I meant that unless you have one, you can't understand the struggle and how current treatment is difficult and frequently not very effective even when the person is highly motivated to improve.

I think it is fine for a person without a PD to discuss how difficult it is to cope with someone who has one. That's what they know.

What I wanted feedback about was if other people with PD's thought a self-help organization was needed and possible. Guess I wasn't clear about that. Thanks.