Ten Years after LBD, the Disease Calls a New Volunteer into Service

by Jason M. Rubin

Ten years ago, my mother died from Lewy body dementia (LBD), and I have long had the awful sense that somehow my mother suffered more than she had to. If only her doctors known more about the disease, the end result would have been the same, but the journey to that end might have been somewhat happier, more bearable, more dignified.

I remember one Mother's Day, I decided to take her out for brunch and then to a matinee movie. She'd been spending most of her time on the couch and I thought I was being a Good Son to take her out in public. We had a nice meal, bought the movie tickets, and sat down and watched the movie. Afterward, as we were walking into the lobby, my mother said she had to go to the bathroom. So I walked her to the ladies' room and she walked in. As soon as the door closed behind her, I realized I'd made a tremendous misjudgment. What if she had trouble doing her business? What if she became confused and didn't know where she was? What if she couldn't find her way out, or couldn't remember that I was waiting for her? I tried to think what would be a reasonable amount of time to pass before I panicked and asked any stray woman in the vicinity to go in and check on her. Eventually, my mother came out. She had completed the task effectively, and I felt I had dodged a major bullet.

The challenges surrounding LBD are staggering. The FDA doesn't even recognize it as a discrete disease and therefore no drugs can legally be approved as being indicated for it. Doctors don't know how to diagnosis it and so it frequently goes under-reported or misdiagnosed. It shares a common pathological profile with Parkinson's disease, yet has a far lower public profile, so attracting funds is difficult.

The late Estelle Getty of TV's The Golden Girls is one of the very few "names" known to have LBD, and no offense to her fans but she's no Michael J. Fox. She's also not alive anymore, so she can't testify before Congress or call her well-connected friends to make big donations. Occasionally, it's revealed that some bigwig has dementia, but there are a lot of forms of dementia. It's easier to report about Alzheimer's because it's a known entity. The owner of the San Diego Chargers reported last December that he has "dementia" but it's never been identified which kind he has.

Awareness is key

So raising LBD awareness among the medical community and the general public is an important goal. Another is to provide a means for siloed researchers in this area to share information with each other. An immediate need is to support the caregiver community, as LBD patients require extensive care, which often falls on the family, which soon becomes burdened with the exhaustion, uncertainly, and financial burden that chronic illness imposes.

It's time to do something about this. And if there's a role for me to play, then it's a project I happily add to my pile and give top priority to.