For the past twenty years, our family has been dealing with Lewy Body Dementia with Parkinson's Disease. It started with our father who passed away in 1996 and now has my sister (age 61) and possibly my youngest brother (age 51) in its grips. In addition, our sole remaining paternal first cousin has Parkinson's Disease. Since we knew what to expect when symptoms first became evident in my sister, we sought out the best diagnostic centers in the San Francisco Bay Area for comprehensive evaluation and aggressive treatment. Now, our youngest brother is in diagnostic phase. We know he's early-stage Parkinson's, but don't know yet how his cognitive issues fit in. Only time will tell.
In addition to having coordinated all my dad's care, I currently am my sister's health care advocate and care coordinator. I'm the family member that keeps tabs on the latest information and coordinates research studies that our family can participate in. Somebody has to find the answers to this disease and although we know that it's probably too late for our generation, we hope that future generations will be able to prevent or postpone the onset or maybe even see a cure.