Today’s posting is part two of the four chapters I am sharing from my audio book, A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease. This week’s chapter is about the fairness of Parkinson’s.
What is Fair?
We are all tasked with some sort of physical, mental, or spiritual challenge in our lives at some point. Some events that we face are inexplicable and hard to fathom. Often, we categorize a level of what is fair or unfair. Parkinson’s disease, for over 30 years, has taught me that as difficult as some lessons are to learn, they’ve helped me to grow.
Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 12 to hear my perspective on fairness:
Please feel free to comment about this chapter by clicking the Leave a Comment button below. If you liked this chapter, please share this post with others by clicking the share buttons on the right.
Next Week’s Chapter…
The next chapter in this series has some ideas on how to talk with your doctor. Come back next Thursday to hear the next installment! If you subscribe to the blog today, you will receive automatic notification when the next post is released.
I found this quote that I wrote a year ago or so. I had put it aside to use for a later date, and now is the time to release it:
Adversity can bring us together, but it is love that can unite us.
Without love and compassion, there is no sealed deal. When both parties are empathetic of the other, there is understanding. Common ground and communication may commence when both parties identify a shared outcome. If one party is incapable of having empathy for the other party’s condition, negotiation becomes far more complicated.
There is far too much hate, anger, cruelty, pettiness, ignorance, violence, and greed in the world. Most of the world wants the same, or at least similar hopes for their future:
Provide a safe place to live and maintain a household.
Access to clean air, fresh water, good nutrition, health, education, and an opportunity to sustain those necessities.
To provide for one’s family and feed, clothe, and educate them.
Some leaders and celebrities exposed to power find it intoxicating and become engulfed in the overwhelming high that comes with authority. At what cost and sacrifice do we make excuses for anyone in public who condones the torrent of hurt being inflicted on government workers, who are just trying to do their job? Our government is famous for negotiation, compromise, and making policy. A government shutdown is a breakdown in everything that the United States of America is based upon. Our mission has always been to try to be a model for the rest of the planet.
Hurting the poor, the sick, the elderly, and those workers living paycheck to paycheck only weakens our government and divides us even more. Creating controversy and misdirection hurts innocent families, be it democrat or republican, is a petty and a desperate act. I have yet to hear any understanding, compassion, or caring words to ease this humanitarian crisis.
Love thy neighbor got lost somewhere and it is time to locate it quickly.
This was created in May 2014, but I thought it was worthy of another appearance.
Here are some Tips for Staying Positive and Proactive:
Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.
Appreciate the good in every day. Focus on what you can do! Do not focus on what you can’t do! Savor and appreciate everything.
Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.
A person with a good attitude is much easier to be around and is good for our well-being.
Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!
Explore the stressors in your daily life. Find an outlet to help you release your stress.
Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.
If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!
Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.
The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.
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!
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
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.
This is a gentle reminder to all the selfless caregivers, care-partners, doctors, nurses, orderlies, therapists, speech pathologists, social workers, and anyone who comes in contact with people touched by a neurological illness. Remember these 5 important points before you react, speak, take offense, lose your temper, or give up:
Everyone has a history and a story. The person who you are dealing with now has had and may still have a very full life that you only see a portion. Give them the credit and respect that they are due.
The current state of the patient that you are seeing doesn’t need more stress, tension or conflict in their lives, working together you both can make life better for the patient and not worse.
Give your loved one or patient flexibility and deal with them creatively and an open mind. If they aren’t responding to medications offer music therapy, touch, or seek a personal solution which motivates the patient. There is a need for gentleness and understanding.
The person with whom you are interacting may have done some important things in their life, raised a family, changed many lives, and been far more active than they are now. Their current condition is not by choice. Show compassion, patience, caring, and generosity.
Someday, in the not so distant future, you or someone who you care deeply for could be facing these very same challenges.