Blog Archives

Here are some online live events you should catch this week!

From IStockPhoto

Be sure to attend the first live online Davis Phinney Foundation Victory Summit this Friday 8/10/18 at 10 AM PST or 1:00 PM EST! I have attended several of their summits and found them to be very educational and informative. Use this link to register today: https://www.davisphinneyfoundation.org/live-broadcast-registration/


This Saturday,8/11/18 join the Parkinson Voice Project for an online lecture from Sarah King, PT, DPT who will be discussing “How To Create Your Personalized Parkinson’s Plan of Attack“. Learn about this lecture and more speakers in their ongoing lecture series. The lecture begins at 10:30 AM Central Time or 11:30 AM Eastern Time. Here’s how to register and learn more about the lecture series: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=2141

An Exciting Documentary Project Called The Animated Mind of Oliver Sacks

UPDATE 07/23/18 – I am happy to report that The Animated Mind of Oliver Sacks project on Kickstarter met and exceeded it’s goal by nearly 25%!
I am so glad to see the support and deep interest in Dr. Sacks’ work continues on! I can’t wait to see the release of the film!
-Karl
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In the medical world, it is a rarity to uncover a medical anthropologist and an ambassador of compassion who writes with humor, tenderness, truth, sensitivity, and frankness. Dr. Oliver Sacks was all that and more. To this day, I don’t know of a greater contributor to the world of Parkinson’s disease. He was a tenacious advocate and Levodopa researcher, as documented in his book Awakenings and then movie starring Robin Williams. Over 50 years later, Levodopa remains the gold standard drug for Parkinson’s patients.

On a personal note, I started taking Levodopa in 1991, had I not had access to this medicine, I can only guess what my life would look like.  This life-changing drug has given me the ability to move, to speak, and to function. Like millions of Parkinson’s patients around the world, I am and will be forever in Dr. Sack’s debt for the gift that he has given me and the Parkinson’s community.

The Animated Mind of Oliver Sacks

The Animated Mind of Oliver Sacks

Oliver Sacks left us in 2015 but his numerous books, writings, lectures, and interviews live on and on. Now, thanks to the passion and vision of documentary film-maker Dempsey Rice, comes The Animated Mind of Oliver Sacks. There is just over two weeks left to complete this important Kickstarter campaign and bring over ten years of exclusive interviews to the big screen. Through the beautiful medium of animation, Dempsey and her team will show us Oliver’s refreshing and revealing outlook on medicine and compassion, music, gratitude, and the down to earth attitude that made Dr. Sacks so revolutionary.

Dr. Sacks connected with his patients. He deeply cared about people and their care. Oliver Sacks understood the uniqueness of every patient and took a fresh approach to the doctor patient relationship. Both a compassionate neurologist and a tenacious investigator, Sacks believed that the patient should be more empowered and in greater control of their care—an uncommon and somewhat controversial opinion for many physicians. You can hear his compassion in this quote:

“My note was a strange mixture of facts and observations, carefully noted and itemized, with irrepressible meditations on what such problems might ‘mean’, in regard to who and what and where this poor man was – whether, indeed, one could speak of an ‘existence’, given so absolute a privation of memory or continuity.”

― Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales

Dempsey says, “Animation is a great art form.” The medium of animation adds a whole new dimension that will elaborate on Sacks’ insights. Meshing Sack’s spoken words and powerful visuals of the stunning animation enhances the thoughts and concepts that are discussed onscreen. Through the power of film, we will see Dr. Oliver Sacks in what I believe to be a memorable moving documentary that encapsulates the immense impact that he had and continues to have on medicine, our medical care and our perception of medicine in general.

I think that this quote summarizes Dempsey’s passion, drive, and appreciation for Sacks’ works: “Throughout our time together, I was consistently awed by Oliver and his deep compassion for all living things.  His unfailing curiosity drove him to explore the magic of how our brains work and delve into the extreme joys and sorrows that come with human existence,” said Rice.  “My hope is that this film inspires new insight and deep compassion for the human experience, in addition to celebrating Oliver’s irrepressible enthusiasm for, and curiosity about, the human mind.”

Upon completion, Dempsey hopes the theatrical release will be available in early 2020.

I encourage you to learn more about Oliver Sacks and Dempsey Rice’s film, The Animated Mind of Oliver Sacks at the following links:
Kickstarter campaign page: http://bit.ly/animatedmind4,
Website: http://theanimatedmindofoliversacks.com/
Facebook: https://www.facebook.com/TheAnimatedMindofOliverSacks/
Twitter: https://twitter.com/oliversacksfilm
or Instagram: https://www.instagram.com/oliversacksfilm/

You’ve Got To Be A Kid, Sometimes! Let’s Go To the Movies!

It isn’t often that I write a movie review.

Okay! In fact, I NEVER write movie reviews. I’m feeling nostalgic and re-connected with the past from a long-awaited 14 years. After 14 years, the sequel to The Incredibles is here! I saw it on Thursday, and it did not disappoint! I wish it hadn’t been over a decade and a half, but it was a blast!

If you loved the original, The Incredibles2 picks up right where the first left us—and that’s all you need to know about the sequel. Just know that the movie is full of action and humor. Enough said!

The geniuses at Pixar did not skimp on detail, sound, or music. This sequel is a fun house, chock full of gems including mid-century motifs of Knoll, Noguchi, Saarinen, Herman Miller furniture, clothing, cars, and architecture.

We had played hooky to go make time to see this movie, something we don’t do very often. The message here, as hidden as it may seem, you might want to:

1. Plan future events to look forward to
2. Treat yourself
3. Savor the little things
4. Avoid always being so serious
5. Laugh as much as you can
6. Work hard and play hard
7. Remember, it’s fun to act like a kid—when the time is right

Let your inner kid out, every so often and take it all in!

EverydayHealth.com Recognizes ASoftVoice.com Blog as One of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive!

EVERYDAY HEALTH logo www.everydayhealth.comRecently, EverydayHealth.com recognized ASoftVoice.com, as one of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive.

It is such an honor to be included with so many outstanding websites! Many of the chosen blogs on the list are included on our blog resource list. If you know of a blog related to Parkinson’s that we overlooked, please let us know and we will check it out! Thanks to EverydayHealth.com and to you, our readers! Congratulations to the other bloggers on EverydayHealth’s list and to every blog sharing their important story!

AsoftVoice.com Recognized as one of the Best Blogs on Parkinson’s Disease for the 4th Year in a Row!

Healthline 2018 Best Blogs Parkinson's Disease

Healthline 2018 Best Blogs Parkinson’s Disease

I am so grateful and honored to announce that for the fourth year in a row Asoftvoice.com has been chosen by Healthline.com as one of the best blogs on Parkinson’s! I am elated to be picked with so many outstanding bloggers and such exceptional websites that I respect so highly! I congratulate all of my friends and fellow bloggers who also received this award!

Thanks to Healthline.com for including AsoftVoice.com as one of their 2018 Best Blogs Parkinson’s Disease and everyone who reads this blog! I hope that I can provide content that you will find to be interesting, educational, and helpful! Thank You!

 

Words Matter In Medicine–Compassion and Kindness Are 2 To Focus On!

When I was first diagnosed, the neurologist in 1991, coldly and in a matter of fact tone informed me that I had “a reptilian stare”! I don’t know if this is an official piece of medical terminology or the vernacular, but I most assuredly must express my thoughts of using such a crude comparison.

Doctors can be outstanding resources for data gathering and possible new treatments, but often fizzle when it comes to bedside manner, hand-holding, support, thinking outside the box, or just sharing compassion. I know that there are some of them out there and I hope that your doctor or doctors are of the compassionate qualification—but if he or she is not, what do you do?

Here lies the $64,000 question (old reference-sorry), of asking what it is that you expect to receive from your physician and how it is delivered?

Is it so difficult to reach your doctor that you can’t get a 24-hour response? Any response?

Navigating the labyrinth-like phone system of most medical providers is a test of resilience and sheer willpower. I think that it might just be an exercise to see just how committed their patients are to the practice. I would compare calling doctors’ offices a close comparison to my childhood game playing of that ever so frustrating, never-ending game of Chutes and Ladders—almost as annoying as pick up sticks. Ahhhhhhhhh, the good old days.

Some doctors’ offices think that they have joined the 21st century by installing these “portals” that are misnamed, closer to a black hole, are often unread on a timely basis, and overly buggy or confusing to maneuver around—other than my issues, they are great!

I don’t have any insight into defying the complexities of the phone systems or portal projections, but you might express your frustrations to your doctor and any staff who will listen. Be sure and share the good stuff with your doctor’s office as well, when this might happen.

A Video To Inspire!

This is my first real attempt at an inspirational film. I hope you enjoy it and share it.

My First Inspirational Video!

I hope that you find this thought-provoking and calming! These are some of my many original photos mixed in with some thoughts. You may have to watch more than once to read everything. Thanks!

April Is Parkinson’s Disease Awareness Month!

Stephen Hawking Went Far and Beyond Thus Excelling Limits, Barriers, and Boundaries!

In the past week, I mentioned the loss of Toys R US, which is a sad memory for all of us who loved our toy stores. The toy store, while an important piece of our past, isn’t nearly as crucial as the loss of Theoretical Physicist, Stephen Hawking.

Stephen Hawking besides being an amazing scientist and one of the greatest visionaries of our time, was a handicapped man who far exceeded his outwardly apparent limitations. Through Hawking’s work in space and time, he gained respect and accolades for his contribution to science, the world, but especially to those of us living with neurological challenges.

Hawking was known for his brilliance but also for his wit and incredible sense of humor. When you looked at Professor Stephen Hawking, his wheelchair and voice communicator became a part of his being. What Hawking wrote and thought has left an impact far louder and more important than his ALS. We looked beyond what most would label as a disability. Hawking lived far longer than ever expected, made a huge contribution to science, and proved that one can truly overcome the adversity of illness.

As a writer, inventor, author, and someone with Parkinson’s disease for over 30 years, I always admired Stephen Hawking. Not until his passing, did I really understand the dignity and awareness that he projected for all of us dealing with chronic health conditions. He showed a strength and tenacity that is an inspiration that I will never forget.

Goodbye To Toys!

The World Weeps for Geoffrey—A Part of our childhood has gone!

Without trying to sound like an old man reminiscing, when I was a boy we had real toy stores, 5 and dimes, candy stores, nut stores, and many more magic shops than we have now! Sure, the web is great– and Amazon has everything, well, almost, and now, if you know what you want, they can probably just ship it to you directly.

The occasional trip to the toy store was this former kid’s highlight. Rock’em Sock’em Robots, Battle Tops, Shoots and Ladders, Monopoly, Clue, besides the creations from Atari, Wham-O, Hasbro, Mattel, and the multitude of toys that most of us grew up with. Is online fulfillment to be the only toy store chain replacement? Are the days of the toy store long gone?

March 14, 2018’s announcement is a tragic blow to those of us who learned patience, concentration, manners, etiquette, cooperation, character, and sportsmanship, all just from board games, alone. Toys teach sharing and bringing friends together to learn proper play. Toys R Us, rather than just thinning the losses of a few chosen select toy superstores, has announced to soon shutter ALL of their toy superstores as well as Babies R Us!

While this may not mean much to some, I know that in my life, the toy store inspired me to invent and look beyond what could be! It expanded my imagination of who I could be or at least dream to be. A toy is really a child’s first tool! Tools can make us better, more productive, and diverse. Toys keep us young. They keep us active, initiated, and sometimes even, enchanted!

Losing the incredible mind of Stephen Hawking, after his contributions to space and science is a huge loss to dreamers everywhere (but what a contribution to the science, disability, and humanitarian fabric of our lives) — more of my tribute to Professor Hawking, very soon.

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