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.
Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.
The event was held at the White House.
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.
As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.
To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!
On Wednesday, State Directors and Assistant Directors representing the Parkinson’s Action Network (PAN) stormed Capitol Hill to advocate for issues facing our community. We met with our Senators and many of our state representatives in Congress. Even though I have done this a dozen or so times, the experience is exhilarating and empowering. I don’t deny that walking the miles of marbled corridors left a few souvenir blisters and left me with a good night’s sleep, but it also gave me a sense of accomplishment.
The experience on the Hill was remarkable but even more wonderful is the camaraderie and friendship generated when we all got together. I thank you all for your advocacy work and the difference you make and strive to make. I truly enjoyed seeing all of you and look forward to our next encounter. Until then, I wish you well.
Next Monday, hundreds of the United States’ most dynamic and involved advocates for the rights and issues affecting people with Parkinson’s Disease will convene in our Nation’s capital. The goal is to be heard and represented but mostly to be understood that we, as a collective force need better funding and services.
Neurological disorders are rising as is the aging population. Even more importantly, younger and younger people are receiving neurological related diagnoses that one might find in an older patient. Whether the cause is our growing toxic world and/or a genetic component that gets triggered or some cocktail of switches, a desperate portion of our population seeks a solution to a real problem that plagues them everyday, all-day.
In less than a century our country replaced vacuum tubes for Silica chips, went from the horse-drawn carriage to the space shuttle, put a man on the moon, and mapped the human genome. Where is the push to eradicate or even slow neurological illnesses? Great strides have been made in other diseases. New therapies and drugs, while slow to come, only slow or mask symptoms. It is time for a push and a unification of voices to be heard in DC and across the nation that more must be done.
The PAN advocates are coming to DC to speak for the countless victims, both directly and indirectly, touched or shaken by Parkinson’s Disease. They are speaking for those who are unable to speak for themselves.
To learn more about PAN and to view an online webcast of our symposium, go to www.parkinsonsaction.org.