The Evolving Portrait of Parkinson’s

“Aging is not lost youth but a new stage of opportunity and strength.” Betty Friedane

 “If we own the story then we can write the ending.” Brené Brown

Précis:  To showcase the amazing art/photography/videography of Anders M. Leines who lives in Norway, which gives me the opportunity to voice an opinion about the emerging picture/image of Parkinson’s today.

World Parkinson Congress (WPC) Promo Video: Please watch this video, it’s powerful; “This is Parkinson’s” a WPC Promo from Anders M. Leines (either view it below or click here).  Anders is a videographer and cameraman who works in Oslo, Norway; he’s been diagnosed with young onset Parkinson’s. One of his goals is to change the view about how Parkinson’s is perceived by the world.  One look at his video reinforces this notion.  A very nice article about Mr. Leines was recently posted in “Parkinson’s Life” (click here to read this story).  Anders also shares his story with his own blog “This is Parkinson`s” – The Exhibition.  The pictures, the script, and the music accompanying the WPC 2016 Promo by Mr. Leines says more in 1 min 42 sec about Parkinson’s than someone could likely summarize by writing a blog post, but nonetheless I’m going to try.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve

The Historical Perception of Parkinson’s: Sir Richard Gowers, in 1886, used this drawing (below left panel) to depict a person with Parkinson’s. When you perform a Google search for a ‘picture of Parkinson’s disease’, these sorts of images are still very prevalent. Yes, the average age of someone with Parkinson’s is 60 years of age and older. And yes, Sir Gowers does accurately show the Cardinal signs of Parkinson’s: tremor, rigidity from muscle stiffness, bradykinesia (slowness of movement), postural instability, and masking (reduced facial expression).  Furthermore, Dr. Charcot’s  drawings, from 1888, also depict a typical Parkinson’s patient compared to an atypical patient with Parkinson’s (bottom right panel).  While these drawings are accurate, these images portray to many who see them that all people-with-Parkinson’s must look and act like this. 

PD_History

“In all human affairs there are efforts, and there are results, and the strength of the effort is the measure of the result.” James Allen

The Emerging Perception of Parkinson’s: The reality today is that available treatment strategy and approach to life for someone with Parkinson’s are very different than what was possible for the people portrayed by Sir Gowers and Dr. Charcot. Today, we have well-trained neurologists that are specialists in movement disorders. We have a growing appreciation and understanding of the pathology and biology of Parkinson’s disease.  We have learned about vital lifestyle changes needed to thrive in the presence of this disorder. We have a growing list of therapies [both traditional and complementary and alternative medicine (CAM)] to treat Parkinson’s; we even have deep brain surgery (this surgical technique itself is undergoing new advances and is further evolving in its attempt to control/modify symptoms). We have an increased awareness of the importance of exercise to try to slow progression of this disorder. There is clearly a subset of people with Parkinson’s that present at an earlier age than 60 years old (and this is what Mr. Leines and his exhibition is highlighting).   No doubt, we are living longer and we are likely healthier than someone from the 1880’s; however, that also implies we’re living more years with our Parkinson’s.

This is not saying that Parkinson’s today is either a benign or a tame disease; in fact, it’s an insidious disorder.  Having Parkinson’s is like trying to get rid of cockroaches in your house.  You’ve done all you can to eliminate the roaches from your home, and you don’t see them for weeks; subsequently one day, they’re back. Likewise, Parkinson’s creeps around in the background of your daily life by stealthily altering physical/movement functions, by slowly uncoupling your crucial autonomic nervous system, and surreptitiously in ~50% of people with the disorder, they can develop psychotic tendencies.  The image of Parkinson’s today is clearly evolving due to improved treatment, better understanding of the disorder itself, and improved strategies for living with it; however, under any guise it is still a disagreeable disorder.

“With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose.” Wayne Dyer

A Change is Happening in Our Perspective of Parkinson’s Today:  It is my belief that the perception of Parkinson’s today has changed and is becoming much different than the historical views as described above. I truly believe that the effort most people are using to handle their disorder puts them in a healthier and better lifestyle to manage their symptoms. An emerging predominate picture of Parkinson’s today is a person striving to live strongly. They’ve embraced the appropriate lifestyle, and they are trying their hardest to not become as depicted by the images from the 1800’s. When you do a Google search for ‘images of Parkinson’s disease 2016’, you will likely find more positive and dynamic pictures of people similar to those portrayed by Mr. Leines.

“Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity.” Louis Pasteur

A Personal Perspective of Parkinson’s Today: With the “This is Parkinson’s” video from Anders M. Leines as an inspiration, I’ve included two sets of pictures of my life with Parkinson’s (photos are below). If my disorder fully progresses, and it is a progressive neurodegenerative disorder, in advanced age (I’m currently 62 years old) I may possibly appear like the drawings above from Sir Gowers and Dr. Charcot. However, as a research scientist, I truly believe in the words of Dr. Claude Levi-Strauss who said “The scientist is not a person who gives the right answers, he is one who asks the right questions.”  I am trying to improve my own knowledge about Parkinson’s; after all, there are still so many questions I want to ask, there are so many new scientific advances that I need to better understand, and there are some emerging treatment strategies that I’d be willing to consider in the future. In other words, Parkinson’s is a reluctant and unwelcome visitor in my body and I’m doing as much as I can to manage the disorder.

With substantial effort, I’m going to do all I can to resist progression; I’m going to stay hopeful, be positive, and remain persistent for many years to come. Importantly, I will take time to stretch every few hours and really make an effort to exercise every day. I will try harder to get an adequate amount of sleep every night.  I am also trying to be mindful and live within the moment by not fretting about what the future could bring.

Thus, this is what I consider to be true of myself (many other people with Parkinson’s would also fit this description): I’m a healthy person that just happens to have Parkinson’s. As I’ve said before, we both have much left to accomplish. We are both still here. Stay focused and stay hopeful.

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“We live in a time when the words impossible and unsolvable are no longer part of the scientific community’s vocabulary. Each day we move closer to trials that will not just minimize the symptoms of disease and injury but eliminate them.” Christopher Reeve

Cover photo credit: http://epod.usra.edu/.a/6a0105371bb32c970b015438c5312a970c-pi

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7 thoughts on “The Evolving Portrait of Parkinson’s”

  1. Dear Frank
    This was the best post so far for me. Thank you for the inspiration and truth you have shared both objective and subjective I join you in commitment to run the race with joy and hope. Pressing on. Thanks. Pat

    Liked by 1 person

  2. Thanks Pat, truly appreciate your comments. We both have a long way yet before we reach the finish line of our races, so let’s keep running and running hard (and yes, with joy and hope); good luck and best wishes, Frank

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  3. Thank you so much for sharing your insight with me. I plan on sharing this with all my PWR! clients this week! It was also a pleasure to meet, work, and visit with you this weekend in Greenville. I hope you found a little inspiration and/or motivation after completing the training. Be well and look forward to seeing you at WPC! Jennifer

    Liked by 1 person

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