There is a great guy in another group who will be going before the UN and presenting fairly soon, that is collecting stories of how people came to their diagnosis...not sure if anyone in this particular group is open or willing to share, but thought I would extend it to you in case any of you are. 

The topic of the discussion at the UN (and again this is global) will be the routine prescriptions that are offered us, and whether global policy needs to change.  He has chosen, as the first person with dementia to be allowed to address them, to have his topic be roughly around Kate Swaffer's "Prescribed Disengagement"...and what he feels is wrong about how we not only come to our diagnosis, but how it is handled right after...and the lack of post diagnostic support.  He is a believer in sharing a collective set of "lived experiences"...and to that end, he is currently collecting the stories of anyone with dementia willing to share theirs. 

He is from the UK, and they tend to have a bit more post-diagnostic support over there...but is still a subject he works hard to improve for everyone. 

Anyways, if you are interested...please feel free to share your story, and (if you give me permission) I will email it to him.