The following blog post from PDF Research Advocate Kirk Hall of Denver, CO is adapted from Kirk’s post on his own blog, shakypawsgrampa.blogspot.com. Last year, I wrote a blog post about the World Parkinson Congress (WPC) in Montreal, which highlighted a, “movement toward more patient engagement in the PD world.” Before giving an update on patient engagement in my own community in Colorado, here is a brief excerpt from that post from October 2013.
Nearly two years ago, I wrote about how the US Food and Drug Administration (FDA) appeared to be ready to approve a new drug for neurogenic orthostatic hypotension (NOH), which, basically, is a precipitous drop in blood pressure upon standing. (I recommend reading that blog as a good primer.) That drug, droxidopa with the brand name of Northera™, did not win approval because of outstanding concerns by FDA. Fast-forward to this week, and FDA has now signaled that it will approve droxidopa for the treatment of NOH.
Several weeks ago, in early December 2013, health leaders from the Group of Eight (G8) met in London, pledging to cure or modify the course of dementia by 2025. This bold declaration is one that the Parkinson’s community is monitoring in light of the fact that about a quarter of people with PD are currently living with dementia. What Should You Know? Dementia describes a range of symptoms related to memory decline. While Alzheimer’s disease makes up the majority of cases of dementia, there are several kinds, including Parkinson’s disease-dementia (PD-D).
The effort to cure diseases like Parkinson’s disease is on the minds of many people during this time of year. We are often traveling home to see loved ones where we learn about new diagnoses or new stages in the disease that they battle, or we are remembering those who bravely fought their battle with Parkinson’s, yet lost. It is understandable, therefore, why there is a push to fund only research that is the closest to bringing about a cure, so-called translational research.
Several months ago, I broached the issue of direct-to-consumer genetic testing in PD. There, my message was that you should look before you leap and take the time to understand what genetic testing would tell you (and whether you really wanted to know it). Implicit in that discussion is the need to have accurate results. This is different than the desire to have the weather forecaster tell you if it is going to rain or not tomorrow. For most people, inaccurate weather predictions are a nuisance more than anything.
During National Family Caregivers Month this November, PDF calls special attention to care partners who are helping to find a cure for Parkinson’s. We are lucky that among PDF’s network of Research Advocates, (all part of the Parkinson’s Advocates in Research program) there are many talented care partners who are working on the front lines with researchers. In this interview, we highlight two of these PDF Research Advocates, care partner team Kim and Libbe Erickson of Stillwater, MN. They joined the program just two years after Kim’s diagnosis in 2010. Here are their insights.