One evening last year, my wife Elaine and I bumped into Sue and Chuck Berghoff at a local restaurant. We swapped stories about recent trips we’d taken, and what was happening with our kids and grandkids. Then Sue shared something unexpected.
Sue told us she’d recently been diagnosed with Lewy Body Dementia, or LBD. We weren’t familiar with it. Chuck explained that LBD is not well known but in fact is the second most common cause of dementia. Alzheimer’s is first. He told us that LBD is fatal and currently there’s no cure.
Sue’s demeanor was calm. We were amazed at her courage in coming to terms with her diagnosis.
A few weeks later, the Berghoffs invited us to an awareness-building event at their home. Sue had invited doctors from Kaiser Permanente and Stanford to speak. It was a fantastic event that brought together about 100 people from all over the community who wanted to learn about dementia and show their support for the Berghoffs.
I thought to myself that any one of us at that event could end up with the same challenge that Sue is facing now. She’s been diagnosed with a brain disorder that in addition to cognitive decline, can shorten life expectancy. None of us really knows how we would handle something like this until it happens.
Instead of giving up, Sue is putting her energy into helping other families who are dealing with dementia. And Chuck is right there with her. It was inspiring to say the least.
In addition to hearing about Sue, I had two other friends who’d been diagnosed with Alzheimer’s. I’d been having some short-term memory issues myself and began to wonder, are my issues symptomatic of LBD, Alzheimer’s, or my advancing maturity?
I went to see a neurologist to talk about my memory issues and ask what she thought I should do. She sent me to the UCSF Memory and Aging Center for a series of tests and arranged for me to have a brain scan at her office.
The doctors had me do some paper testing, verbal Q&A testing, and mobility testing, and then I had the brain scan. During the testing process, the doctors asked if I was open to participating in a study.
I said, “Sure.” I thought it was the sort of thing that Sue would do. But based on my test results and the scan, I was told my brain health and cognitive functions were good so I wasn’t a good candidate for the study. I consider myself fortunate.
I recalled one of the speakers at the Berghoffs’ event. Dr. Geoff Kerchner from Stanford Health. Someone had asked what could be done to either delay the onset of dementia or slow the progress once diagnosed. He immediately mentioned three things. Daily exercise, a healthy diet, and regular active engagement with others.
For my part, I am following Dr. Kerchner’s suggestions, and I plan to go back and get retested every year or so. I have a family, children and grandchildren and I owe it to them.
I also went to see SUE’S STORY, a documentary about Sue’s journey with LBD. It is very touching. For someone new to this topic, the film will be very helpful and inspirational. It conveyed the courage I’ve seen in both Sue and Chuck, and got me thinking how we can all help make a difference in our own families and communities.
Dana Ditmore has more than 30 years of senior management experience in the high tech and nonprofit sectors and has been recognized by numerous organizations for his leadership and philanthropy in Morgan Hill.