Who Are The Parkinson’s “Experts”?

Who are the experts?It has occurred to me that there are so many “experts” about Parkinson’s disease who don’t live with Parkinson’s on a daily basis. Why is there a deficit in recognizing that those living with Parkinson’s can be just as knowledgeable as those who study it? It’s a question that might sting a little, but who are the experts on living with Parkinson’s?

It’s wonderful to hear from psychologists, neurologists, and researchers, but overall, when the dust settles and the conferences end, who would you rather hear from? Who knows more about how to express their work of art, the artist or the critic? I think most of us would agree that the artist knows what they want to express while the critic is merely the interpreter who conveys their own perspective.

The newly diagnosed person with Parkinson’s and the one in denial are not yet experts, but that doesn’t mean that they can’t once be one. I don’t claim to be an expert but longevity with illness provides lessons whether you ask for them or not.

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 June 1, 2015, in Education & Support, Health, Wellness and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. Karl, I couldn’t agree with you more. I don’t have Parkinson’s but the same thing applies in almost every other medical/dental situation. Doctors and other medical personnel seem to think that just because they have a few years of training they know what’s best for the patient. The most frustrating part for me is that these “experts” apply their knowledge in a “one size fits all” manner. What we need is patients who speak up for themselves without being intimidated!!!!

  2. I have now lived with Parkinsons for over eight years. I am certainly not an expert in the condition in the medical or research sense. That said, I have acquired some knowledge of the medical basics and of current research in lay terms. However, where I AM expert is in the effect which the condition has on my life and that of my family and of the progressive limitations which it imposes.Yes, we must speak out. Indeed, I would argue that we have a responsibility to do so.However, our medical and research colleagues can only deal with what they see and unless we tell them what is important to us,(including finding a cure), then they will continue to be partially isolated from the reality.
    Our task is not to be sidelined or intimidated by not being medical practitioners but to assert our position as knowledgable patients who want to work as partners.

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