Lewy Body Dementia Association, Inc.
https://www.lbda.org/phpBB3/

We have been lurking for a couple of months-
https://www.lbda.org/phpBB3/viewtopic.php?f=96&t=4379
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Author:  AnnmarieJon [ Tue Jun 06, 2017 6:11 pm ]
Post subject:  We have been lurking for a couple of months-

Now we are ready to be legit. We are 66yrs old,married 33 years, Jon is the unfortunate person living with what we suspect is Lewy Body. He has lived a very clean, active, healthy life-earning $ as a miner/logger. I am honored to be the wife in this relationship. I am retired from nursing- (home health, hospice, long term care, etc). We are happy that we lived a life of challenge and adventure. A few years ago we became aware that 'something was not right'-- now we realize there were indications several years before that. Upon reading an article by Robin William's wife I recognized many of the symptoms so began my online research. We have no doubt that LewyBody / parkinsons is what we are dealing with. We are looking for a physician who has experience with, or at least knowledge of, LewyBody. We are eternally thankful for the posts we've been able to read - especially the revelations of the actual persons living with this nasty beast-- they have helped Jon express and clarify his experiences - which helps me understand and accommodate. We are down to earth people, happy to live with the results of our choices, and will be spending our limited cash on any (minimal) establishment medical intervention. We feel we need to establish with a doctor to hopefully prevent Annmarie being put in jeopardy over decisions and actions we may choose to make - or not. At this time we grow and use only our own herbal medicine (legal in Oregon). We do not intend to risk loss of cognition for potential physical improvement..... Being early in this journey, we've a lot to learn and a long way to go. I'm glad we found all of you. Annmarie

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