In this Q&A, Phil Myers shares his thoughts on volunteering as a PDF Research Advocate, and provides tips for individuals thinking of applying for a spot at our upcoming training for new advocates. Phil and his fellow 230 Research Advocates are part of PDF’s Parkinson’s Advocates in Research program. Q. Why did you apply to the PDF Learning Institute? A. A few years ago, my wife had passed away with a parkinsonism and I had recently been diagnosed with Parkinson’s disease. These experiences fueled my desire to be involved in medical research. But I didn’t have a medical background, so… Read More
The recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease. While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the… Read More
The Parkinson’s Disease Foundation has long recognized the creative abilities that many people with Parkinson’s disease acquire when living with the disease. We even capture many of these expressions on our website with some of the best examples appearing in our acclaimed annual calendar (which you can now pre-order for 2015 here).
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).