This is a good article on the value of online patient groups:
The New Health Care
Sometimes Patients Simply Need Other Patients
Using the internet for a diagnosis is not recommended, but there’s great power in sharing stories.
By Aaron E. Carroll and Austin Frakt
The New York Times
July 9, 2018
Brain Support Network has a list of online groups for those coping with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.