I wish Diane Cook's and Betsy Vierck's blog was available when I was recently diagnosed with Parkinson's disease (PD). During that stage of my PD journey, I was in the throes of denial.
What does it mean to be recently diagnosed with PD?
Your PD diagnosis was less than 4 years ago.
Your needs for information and support are very different than person's with PD who are in the middle to late stages of the disease.
You are still grappling with the fact that you have a chronic, progressive brain disease.
Groundbreaking New Blog About Parkinson’s Targets the Recently Diagnosed
DENVER, CO, October, 2010 -- www.recentlydiagnosedwithpd.org , a blog for people recently diagnosed with Parkinson’s disease (PD), was launched on September 11, 2010 by two PD patients, Betsy Vierck and Diane Cook. Both women were diagnosed with the progressive and often-debilitating disease within the last two years. The blog is sponsored by Project Spark, a Washington, DC and Denver-based foundation focused on Parkinson’s disease.
Soon after receiving the news that they have PD, Vierck and Cook, both avid researchers, started to dig into the literature to learn about their disease. The maze of information on the Internet was often confusing and conflicting. They were not sure whom to turn to for emotional support.
“Doctors only have a limited time to tell you what you have and write your prescription. Even the most competent and compassionate physician can’t tell you everything you need to know or give you substantive emotional support as you try to grasp the fact that you have this incapacitating disease,” says Vierck.
recentlydiagnosedwithpd.org is the second program Vierck and Cook have developed to help fill this gap in information and support and to meet the needs of people in the early stage of Parkinson’s. Their first project is a monthly Denver-based support group established in February 2010 for people recently diagnosed with PD. The group, sponsored by the Colorado Neurological Institute and the Parkinson Association of the Rockies, has grown to 50 members in six months.
“From learning to cope with the emotional issues associated with a PD diagnosis to the measures we can take to potentially slow down the progression of the disease in the brain, we realized that the information we were gathering for and from the support group is extremely valuable. We needed a way to get this wealth of information to the 65,000 people diagnosed with Parkinson’s every year. So, we decided to create recentlydiagnosedwithpd.org as a national forum specifically for this group,” says Cook.
Vierck and Cook’s philosophy is to be upbeat and focus on solutions. The blog’s tag line describes this spirit: A Blog About Taking Charge of Your Parkinson’s with Optimism, Energy, And Action.
Recentlydiagnosedwithpd.org covers those topics that are uniquely important to people who are in the early stage of Parkinson’s. They also keep track of breaking news in Parkinson’s research and provide interviews with experts in PD and other important areas such as nutrition and exercise.