A Look At Young Onset 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,

Fighting for right(and candy) at a young age!

Fighting for right(and candy) at a young age!

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.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over twenty-five years. Karl believes he has had PD since he was seventeen years old and was diagnosed at the age of twenty-three. Now fifty, he is a Parkinson advocate, entrepreneur, inventor, writer, blogger, photographer, Reiki Master, and speaker on PD issues. Karl is the author of the book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease. He has been chosen as a blogger partner for the 4th World Parkinson Congress being held this September in Portland, Oregon. He has a bachelor’s degree in English from the University of North Carolina at Chapel Hill. His writing has been featured in The New York Post and he has appeared on BBC radio, the CBS Saturday Evening News, Japanese television, as well as several local Washington, D.C., television stations. Karl is a former board member and a Virginia assistant state director of the Parkinson’s Action Network and a board member of the Parkinson Voice Project. You may reach Karl via email at asoftvoice@gmail.com, visit his blog at www.asoftvoice.com, on Facebook, or contact him via Twitter @asoftvoicepd.

Posted on October 23, 2015, in Education, Education & Support, Health, Parkinson's Disease, Philosophy, Wellness and tagged , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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