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Parkinson’s is Still a Mystery!

In Norman Cousins’ book, Anatomy of An Illness, Cousins mentions a placebo study where over eighty percent of the Parkinson’s patients showed improvement. Participants in the study were told that they were receiving a powerful new drug. The pill that they were taking was not a new drug, but the expectation of benefits was strong enough to show improvement. If Parkinson’s is degenerative, wouldn’t you think that the placebo effect wouldn’t work anymore? How is this possible?

Two years ago, after having Parkinson’s symptoms for over thirty years, I experienced twenty-four hours without showing symptoms of Parkinson’s disease. I don’t understand, and I am not so sure that the medical community can explain such an event!

If those neurons that supposedly are dormant, dead, or erased, then someone needs to explain to me how a placebo effect and a Parkinson holiday are still possible! This is a tricky illness that manifests slowly and often very secretively. Often, the first symptoms may be constipation, loss of sense of smell, shoulder or wrist pain, or neck pain.

The latest research points to the gut as being the key culprit for the beginnings of this illness but is Parkinson’s more than one illness? By all the discussions that I have had with experts (many of those living with Parkinson’s and many working in the Parkinson’s disease field), who confirm their belief that it is very likely that we may be dealing with a variety of different illnesses.

A common saying in the Parkinson’s community is that “if you’ve met someone with Parkinson’s then you’ve met someone with Parkinson’s “, meaning that everyone with Parkinson’s is unique. The uniqueness of each and every case and how different each individual deals with a variation of symptoms keeps both patients and their neurologist guessing how to countermove.

Balancing the right diet, maintaining a challenging exercise regimen, and working closely with your neurologist for the right personalized plan are vital pieces to staying on top of my Parkinson’s. We all may respond to something completely different. The key is to discover what the something is that makes that difference for you!

We Can Work Through Pressure

Pressure hits us all. Some people thrive under pressure, while others just cannot deal with it. The varying degrees of pressure may depend upon where we are in our lives. When we are hit with multiple stress points in our life, like illness, family issues, concerns about loved ones, financial dealings, or just daily living, pressure will compound.

Unexpected events are going to pop up as we get older.  Factors totally out of our control will try to take a toll, but there are ways to be better prepared for the unexpected obstacles that we may encounter. These are not sure-fire solutions for dealing with pressure, but maybe one or two methods to offer a few moments of solace and peace.

  1. Focusing on your breathing and sitting quietly for brief periods can be calming. Clearing your thoughts from your mind and just focusing on yourself only for a few minutes may help to reduce the pressure.
  2. Relaxation, be it reading a novel, working on a jigsaw puzzle, or listening to your favorite music should not be forgotten or discounted. I am a big fan of music.
  3. Keeping a journal, drawing, singing, looking at photos, or watching your favorite comedy are all ways to relieve the pressure for a brief respite. These are but a few of the variety of options available to us.

Sometimes the pressure in our lives requires outside intervention and we need the help of family, friends, or even professional help. Don’t push away help if you truly need it. We all need help at some point!

Being Malleable Opens Potential Benefit!

Rigidity in thought and body may go hand in hand. Rigidity can be many people’s main complaint when they are first diagnosed with Parkinson’s disease. Keeping active, moving, exercise, and stretching are just a few of the tools to keep in mind when your body starts to stiffen up.

As we age, it gets easier and easier to become so convinced that there is only one way to do something. When we get to this mentality that there is only one correct answer, we may be shorting ourselves of new pathways and seeking new alternatives. The sooner that we accept the way we used to do a certain task may have changed, the sooner we can create a plan to identify and try a new method. Flexibility in body, mind, and attitude are necessary when considering what it is you want to tweak with your illness. Sometimes, it may take a slight increase in medication to improve your on-time and reduce symptoms of the disease. Sometimes, thinking outside the usual structure of traditional medicine can be fruitful.

Had I not incorporated reiki, massage, meditation, qigong, yoga, exercise, and reflexology, all in to my life, I honestly don’t know where I’d be. I can tell you this, at first, I was not a believer. It took a leap of faith and necessity to get there. Had I not gone outside my comfort zone, I would never have benefited from these various therapies

For those who question the true benefits of complementary therapies, I ask this: Don’t you think that these therapies might have some merit if they’ve been around for hundreds to thousands of years? Is skepticism holding you back from trying something new? Is it time? Is it money? What holds you back from exploring new options of helping yourself?

Adding a new practice, therapy, or routine to your health regimen takes some investigation, research, and commitment. Keeping positive and remaining hopeful are beneficial in whatever you choose to try.

Depending upon your choice of therapy, it may be important to confirm with your physician, neurologist, or specialist, just to be safe. I am not a doctor! I am a Parkinson’s patient of over 30 years that can declare benefit and relief from these therapies.

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!

 

Mother’s Day 2018

On this, the 8th Mother’s Day without her, I lit a candle and enjoyed her favorite flower in her memory! She encouraged my blogging, my writing, and ultimately my books! I am so grateful for her support!

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.

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