Picture Of The Week-PD Awareness Tulips

PD Awareness Symbol
Bring About PD Awareness!

April is Parkinson’s disease awareness month and it is time to educate our communities, governments, and yes, even doctors, about Parkinson’s disease. It is time to dispel many of the myths that have developed over decades. 

Here are just a few:
 
MYTH 1) Only the elderly and Michael J. Fox get Parkinson’s disease (PD). Well, I got diagnosed with PD at the age of 23 but had symptoms at least 6 years prior to identifying it as PD. Michael got diagnosed with PD very young as well. Most people associate PD with older people in their 60’s and 70’s but more and more neurologists are finally recognizing that younger people are getting PD and it is not just a disease for older people.
 
MYTH 2) There are 1 million people in the United States with Parkinson’s disease. The truth is we just don’t know how many people in the US or the world have this illness because we have no registry or any way of keeping track of who has PD.
 
For more information on the development of a registry or to find out how you can help promote the registry, contact the Parkinson’s Action Network at http://www.parkinsonsaction.org/ or PAN to contact your state representatives.
 
MYTH 3) Deep Brain Stimulation (a surgical electrical implant)(DBS) means that I no longer need to take my medication. DBS is not a cure nor  does it mean that you will stop your medications. You may take less meds or find that you need them less frequently but you may still be on some regimen. DBS will not stop the PD but it may lessen symptoms and improve quality of life for some patients.
 
MYTH 4) Parkinson’s patients move uncontrollably and rapidly (dyskinesia) as a symptom of  Parkinson’s disease.  My understanding is that dyskinesia is not a symptom of the illness directly but is from too much dopamine being released into the brain and thus a rapid and explosive uncontrollable movement that erupts. Often, if the person can lower the potency or frequency of a certain med, the dyskinesia may lessen. Ask your doctor before you make any changes, please!
 
These are but a few of the possible misconceptions that the public should be aware of when we discuss Awareness Month. Let me know if you like this and want to see more myths about PD in future postings.
 
I am not a medical professional. I am just a long-time patient sharing my observations and opinions.  See your doctor for medical advice–not me.

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 April 18, 2011, in Education & Support, Health, Media & Trends, Medications, Parkinson's Disease, Philosophy, Politics and tagged , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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