This is the third in a series about the early history of the LBDA and our involvement in it and in the spreading of the word about LBD in general.
The first few years, the organization was loosely based in Arizona, with a mailbox in Tempe, a university town the group thought would give them veracity. However, it was really national, with members spread out from coast to coast. They met monthly via group phone calls and face-to-face meetings held every six months in a variety of places from Florida to Arizona and from New York to Georgia. Eventually, it found a permanent home in Georgia, which the group decided was closer to research centers than the Arizona location.
There were a few mistakes. One was when, in an effort to save money, the group bought thousands of fliers. The idea was sound, except that the group was growing and and information about LBD was also growing. Within a year or so, the fliers were replaced with a new, more up-to-date version, leaving hundreds (thousands?) still sitting in boxes in Jim's spare room in Arizona. They were still there when we married. I had family coming to visit but there was no room for a bed. We solved that by buying a twin mattress and laying it on the boxes. That's where the fliers lived until we finally recycled them a few years later.
When Jim's six years on the LBDA board were up, I gave up from my job as Volunteer Coordinator too. We still supported the organization and believed passionately in its cause, but it was time for others to take over. My post-retirement dream had been to travel in an RV and teach--something, I didn't really care what. I now believed that this might be possible.
Jim wasn't keen on RVing. He had enjoyed it with Annie but considered it a "been there, done that" thing. However when we included teaching about LBD into the mix, he stepped right up. We bought an RV and we've been traveling up and down the west coast spreading the word about LBD ever since. (Update: After about 12 years of RVing, we are selling our motor home. Age is catching up with us and it just isn't as fun anymore.)
By 2009, we'd started writing books. There still was very little out there about LBD and of that, even less for caregivers. I'm the writer, and he's the detail person, "Mr. Eagle Eyes," they called him at the LBDA. We are on our fourth LBD-related book now. Our most popular one, A Caregiver's Guide to Lewy Body Dementia, was published in 2010 and it is still considered the main go-to book for LBD caregivers. We are so honored to have been able to do so much good!
We have great hopes for our latest book, Responsive Dementia Care, which is directed towards dealing with the dementia-related behaviors that often show up so early with LBD--and doing so with fewer drugs. Watch for it. It will be on our websites and on Amazon soon!
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.