Last week, the blog was about the beginning of the LBDA and Jim's involvement in it. This week is about how I got involved.
In 2004, Jim moved to Arizona to be closer to the LBDA "headquarters," presently only a post office box in Tempe, but they had hopes for more eventually. The organization was finally getting its nonprofit status and donations were coming in. The hope was that soon they could have a real office and some staff to fill it. In the meantime, the board members continued to work out of their homes and meet mostly via phone.
The organization had grown and now offered several support groups and a telephone support line. As one of the first telephone responders, Jim spent hours sitting at his desk listening to LBD caregivers and giving them support. A great listener, he was in his element. He found that just listening was what most of his callers needed. That and a little info, of course. Accurate information about LBD was still not easy to find.
In early 2005, Jim had been single for almost two years. Long retired and in a new community away from family and old friends, he was feeling lonely. He and Annie had enjoyed square dancing and so he signed up for a refresher class. My late husband and I had been square dancers too and that same winter, I also signed up for refresher classes--in Washington. However, I was a snowbird...I spent my winters in Arizona. I found a class there at about the same level--the same one Jim was in! The instructor put us together and we've been together ever since.
Jim was pretty shy but I found that I could get him to talk if I asked questions about LBD. Spreading the word about LBD was still his passion. Although I was a nurse, and even cared for my sister who had Parkinson's, I'd never heard of Lewy bodies or Lewy body dementia. By the time I'd known Jim for a few months, I knew a lot! But even after we were married, I saw it as his mission, not mine. I went along as his support, if I went at all.
I did accompany Jim to Washington D.C. when the LBDA board met there. I knew it might be my one chance to visit nation's capitol. By then, Angela Taylor, who is still active with the LBDA, had taken over as President. I made the mistake of observing to her that the group's handling of volunteers was poor. Like the good President that she was, she replied by suggesting that I take on the Volunteer Coordinator job. I did, and with that, Jim's mission became mine! In fact, I had the honor of being chosen as the LBDA's 2007 Volunteer of the Year.
By the time Jim's six year term on the board was over, the small group of seven working out of their homes had grown into an organization based in Georgia, with several paid staff and around a hundred support groups throughout the nation and Canada. Our mission remained the same: to spread the word about Lewy body dementia, although research became important too. We all would like to find a way to end this baffling disorder!
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.