@bmfoster
Thank you so much for your reply. I'm really trying to think positively and hope that I'll be one of the few lucky ones with PAF that doesn't go on within a few years to have one of the 3 bad diseases, but I do feel I need to be prepared. My father was diagnosed with Lewy Body Dementia, so I tend to think that that's my fate.

Thank you for the lifestyle and medication suggestions. I'm a 75 year old woman, so it's been a bit difficult for me to tell whether all of my symptoms are from PAF or from just getting old. The worst symptom I have to date is the orthostatic hypotension, but I also have GI symptoms, symptoms of REM sleep disorder and urinary incontinence (but there aren't too many 75 year old women who don't). For me, the worst part is the anxiety and depression about what the future holds.

I'd like to be seen and followed by someone in the US that is considered to be at the top of the field in synucleinopathies. From a search of the web, it seems that the Mayo Clinic is one of the few institutions that's running clinical trials on PAF. I have 3 questions: where do you go for your care, do you like the care you're being given and do you know if it matters whether a patient goes to the Mayo Clinic in Rochester or Scottsdale. Any help with picking an institution to go to would be appreciated. Thanks in advance.