No Holiday For Parkinson’s Awareness

PD Tulip

PD Tulip

April has been proclaimed to be Parkinson’s Awareness Month, but just how aware are we really of Parkinson’s disease?

Those of us living with the illness as well as our care partners, caregivers, and close relatives, are all well aware of the physical, the mental, and the spiritual toll that Parkinson’s can take.  Unless you live with the disease on a daily basis, it is difficult to comprehend the wide range of symptoms, drug side-effects, and varying degrees of overall health issues that are truly Parkinson’s related—but I ask, how much real awareness is there of this disease?

Just getting a diagnosis with Parkinson’s can be an arduous endeavor.  The journey with Parkinson’s is riddled with unknowns that neither scientists nor neurologists can explain, at this time.  Dedication to unraveling the mystery of our gray matter is crucial to ending all neurological disorders.

In 2017, the bicentennial of James Parkinson’s observations and discoveries will be recognized. If you look at the landscape of successes in battling this illness, for all the time, money, and attempts at awareness, there is so much need that is left unmet. After all this time, there is still so little known about this elusive condition.

Maybe, spreading awareness and information, when at all possible is a key.  Consider sharing your story with the uninitiated and those who are unfamiliar with Parkinson’s, for this offers an opportunity to demystify an illness that is so unique for each individual. Let’s not limit Parkinson’s awareness to just 30 days!

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-one, he is a Parkinson’s disease advocate, an entrepreneur, an inventor, an author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and care partner, Angela Robb. He has blogged for ten years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net and is a contributor to PatientsLikeMe.com. His blog, ASoftVoice.com, has been recognized four years in a row by Healthline.com as one of The Best Parkinson’s Blogs of 2018, 2017, 2016, and 2015! Healthline.com also listed the book A Soft Voice in a Noisy World in their list of Best Parkinson’s Disease Books of 2017! FeedSpot.com has recognized ASoftVoice.com for 2018 and 2017 as a Top 50 Parkinson’s Disease blog. Karl was a blogger for the 2016 World Parkinson Congress in Portland, Oregon. He is a frequent speaker on Parkinson’s disease issues as well as an experienced advocate for Parkinson’s issues throughout the United States. He is also an advisor and consultant on Parkinson’s disease. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network based in Virginia. He was an active board member (6 years) and an advocate (18 years) with the Parkinson’s Action Network (PAN). In his free time, he is a photographer, constant writer, longtime magician, and a practicing Reiki Jin Kei Do master. Karl received a Bachelor of Arts degree in English from the University of North Carolina at Chapel Hill. He has been featured by The New York Post, BBC Radio, CBS News, National Public Broadcasting (NPR), in The New Republic magazine and NHK World Television, as well as several Washington, D.C., television stations. You may reach Karl via email at asoftvoice@gmail.com, on Facebook, or contact him via Twitter @asoftvoicepd. I’m available for speaking engagements to share my experience living with Parkinson’s disease. Please contact me at asoftvoice@gmail.com if you are interested in having me speak to your group, conference/symposium, or would like me to write an article for your newsletter or blog. I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

Posted on April 8, 2015, in Education, Education & Support, Health, Media & Trends, Parkinson's Disease, Philosophy, Politics, Wellness and tagged , , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Very good question, and a much gentler answer than my post about James Parkinson. This disease is ruthless – takes no prisoners and never stops. Many thanks Karl – I so wish you health!
    https://www.linkedin.com/pulse/work-together-cure-parkinsons-lisa-vanderburg?trk=hb_ntf_MEGAPHONE_ARTICLE_COMMENT

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