LBDA History from a Founder's Perspective

October is LBD Awareness month. This year is also the LBDA's 15th anniversary. That's why we are taking this time to share a little history about the LBDA, how it was started and how both Jim and I became involved. For Jim, it started much earlier than 15 years ago--more like 20 or even more.

Jim and Annie had a full life. True, Annie had had chronic constipation for years and years. And true, she'd had Active Dreams, where she even tried to beat up Jim in her sleep. They laughed about it. Nothing to worry about, you know. And none of that stopped them from enjoying life. They square danced, traveled, enjoyed their grown children and their grandchildren. But then, Annie could no longer remember the dance steps. She got nervous when they traveled. And she started accusing her daughter of things that just weren't true.

Annie was developing Lewy body dementia, but this was the late 1990's and no one knew much about it. Not their family doctor. He just told Annie it was a normal part of aging. Not the specialist Annie eventually saw. "Alzheimer's," he said. But Jim knew differently. Annie's symptoms just didn't fit. They did fit this thing he found on the internet called "Lewy body disease." But the doctor just shrugged. "Never heard of it," he said and continued to treat Annie for Alzheimer's...with drugs that we know now that people with LBD are especially sensitive to. Actually, they aren't even recommended for people with Alzheimer's now!

Because of this, Annie was medicated with drugs that caused her to be hospitalized. Then, because the hospital staff did not know that a person with LBD could be much more mobile at some times than others, Annie woke up from being almost comatose to find bed rails keeping her from getting up to go to the bathroom. Always resourceful, she climbed over the foot of her hospital bed. She experienced her usual low blood pressure when she stood up and fell, puncturing her lung. She died a few weeks later, in March of 2003.

Even before Annie passed away, Jim discovered an online LBD caregiver support group, filled with people having similar problems to his as they attempted to care for loved ones with LBD. One of them, Imelda Fagen, started a website, called "Lewy Body Disease.com" which eventually became LBDA.com. People began donating money via the website, which Imelda passed on to various places dealing with LBD, such as hospitals or research centers. The group began to recognize that they needed to incorporate. Then they could use the money for their own goals.

In July of 2003, Jim, now a surviving LBD spouse living in CA, met with four women from the online group in LaCross WI and did just that. What to name their new organization was an issue that resulted in lengthy discussion. The Lewy Body Dementia Association was finally decided upon. Since Lewy bodies were involved in other diseases and disorders, these two words were discarded in favor of the more specific "Dementia." (This has continued to be an issue. "Dementia" has such negative connotations that many wish the group had chosen otherwise, as the Alzheimer's group did!)

• Jim Whitworth was elected President and served his full 6 year term, the first two as President and the rest as a Director. "I was the only man and the women ganged up on me," he said."
• Elizabeth Wittenberg, of Shelton WA, was elected Vice President but soon found that she couldn't do her part and care for her mother too. 
•  Peggy Smith (SC) was elected Secretary/Treasurer and was active with the group for several years. Peggy's investment in the LBDA was perhaps the greatest of the five founding members. Her mother and at least one other female family member had LBD. 
• Imelda Fagan (NY), whose husband had LBD became a Director. (The same Imelda Fagan, who had the website.)
• Jan Childress (CA), whose father had LBD and later, whose mother developed Alzheimer's, was another Director. 

 The day after the group was incorporated,

• Donna Rae (MI), whose mother had LBD, joined the group as a Director. 
• John Young (TX) whose wife had LBD, also became a Director. He eventually became the group's third President. His wife was one of the few loved ones we all got to meet because he often brought her with him to the meetings. 

Next week, how Helen got involved in the LBDA and what the Whitworths went on to do.

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.