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.
Last month, the National Institute of Neurological Disorders and Stroke stopped one of the largest clinical trials for Parkinson’s disease to date. This trial was investigating whether a nutritional supplement, creatine, might have potential to treat Parkinson’s disease.
There’s no other way to describe it … I crashed at the Montreal airport. We had left the 3rd World Parkinson Congress (WPC) in plenty of time, but I think everyone leaving the Congress for home that day was trying to catch their plane simultaneously.
In early October, I was in Montreal attending WPC 2013. After a long flight from California, I headed straight to the conference center. The first thing I noticed as I entered the conference center was the presence of people with Parkinson’s (PwPs) everywhere. Several PwPs were accompanied by their caregivers, some traveled with friends and others looking for friends who were also attending WPC. It seemed like PwP from all over the world congregated in Montreal.
As I leave Montreal’s WPC 2013, I think back on how I felt leaving Glasgow’s WPC 2010, and the difference is striking. In Glasgow, I was an attendee two years into my Parkinson’s diagnosis, eagerly absorbing as much as I could by attending every session. By Montreal, I was several years into serving as a PDF Research Advocate, as part of the organization’s Parkinson’s Advocates in Research (PAIR) program.