I am so pleased to have Robin Elliott, the Executive Director and CEO of the Parkinson’s Disease Foundation answering my questions on my blog today. This is right before the World Parkinson Congress in Portland, Oregon, where thousands will congregate to discuss, share, convene, and educate one another on the latest research in this illness.
Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for participating.
Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?
What do you like on your pizza?
Of the four seasons, which is your favorite time of the year?
How many World Parkinson Congress events have you attended?
Four (including this one in 2016)
What are you looking forward to most in Portland, site of the WPC 2016?
Riding a bus tour (if time allows) of the one major city in America that I have never visited
Tell us something about yourself that we might not know about you that you would like to share.
I love to play the piano — preferably in private — and the church organ
Where would you like to go, that you have never been before?
Australia and New Zealand
What is the Parkinson’s Disease Foundation (PDF) working on that you would like to tell us?
PDF ‘s new program of research and education on the special problems that are confronted by women who have Parkinson’s Disease
If your first experience with Parkinson’s disease (PD) was anything like mine, I went into a state of shock, disbelief, and a spiral of “what do I do now” syndrome. That was a long, long time ago, here in this galaxy, not so far away.
Since then, I have had almost 28 years to digest and understand (or at least try to) what it means to face the diagnosis of Parkinson’s disease. While in my very first neurological waiting room I found myself, a 23 year old, surrounded by much older patients in wheelchairs with various conditions. At the time, I, like most of the public was positive from all that I knew that only the elderly get Parkinson’s disease. A few years after my diagnosis, it was bittersweet reinforcement from Michael J. Fox’s release of diagnosis that Parkinson’s was not exclusive to those over the age of 60. I would like to think the world outside of the Parkinson’s community has a grasp on the nuances of our Illness, but I think I would be wrong.
Many are surprised that I was diagnosed so young despite that the face of Fox has largely become synonymous with this Illness. Both,
he and I and many others that I know are not anomalies. We are young and we are a growing segment of the population with Young Onset Parkinson’s disease.
At the time of my diagnosis, I was said to be in the rare two percentile of patients. Now, according to the Parkinson’s Disease Foundation (PDF) it is estimated four percent of people with PD are diagnosed before the age of 50. It is estimated that 60,000 new cases are diagnosed a year and somewhere between 1 million to 1.5 million people in the United States are living with it. The truth is, until data collection is put in place, all these numbers are sheer speculation. To learn more about data collection for Parkinson’s disease and what you can do go to http://parkinsonsaction.org/our-work/data-collection/.
Neurological disorders largely remain a mystery mainly due to the sheer complexities of the human brain. Better government funding, a drive for expediency, better institutional sharing and cooperation about data, and a public outcry that urgency is required right now must be reiterated over and over.