Category Archives: adversity

Building Empathy for Parkinson’s

“When people talk, listen completely. Most people never listen.”  Ernest Hemingway

“To perceive is to suffer.”  Aristotle

Introduction: The loss of dopamine-producing neurons in the mid-brain leads to Parkinson’s disease, which usually presents with motor dysfunction of different degrees of progression from person-to-person.  This post explores the differences between empathy and sympathy, and describes a new device that allows one to actually experience a person-with-Parkinson’s tremor; surely providing much empathy from the experience.

“No one cares how much you know, until they know how much you care”  Theodore Roosevelt

A lesson learned from the classic rock opera “Tommy” by The Who: The plot of the 1969 rock opera “Tommy” begins with Tommy’s parents.  His father, Captain Walker, fought in World War II but it is assumed he died. However, Captain Walker is alive and returns home to his wife and Tommy. Believing her husband to be dead, Mrs. Walker has a new lover.  Captain Walker accidentally kills the lover, in the presence of Tommy. Tommy is traumatized by what he witnessed; he becomes catatonic.  Three musical examples: Go to the Mirror (listen here) Tommy sings “See me, me, feel me, touch me, heal me / See me, feel me, touch me, heal me.” Tommy’s father sings “I often wonder what he is feeling / Has he ever heard a word I’ve said? / Look at him in the mirror dreaming / What is happening in his head?” In Tommy Can You See Me? (listen here)  his mother sings “Tommy can you hear me? / Can you feel me near you? /  Tommy can you feel me / Can I help to cheer you.” In See Me, Feel Me (listen here) Tommy sings “See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / Listening to you, I get the music / Gazing at you, I get the heat / Following you, I climb the mountain / I get excitement at your feet.” Hopefully, you can empathize, not sympathize, with Tommy and the life-struggles he encounters and overcomes in this rock opera.

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.” Milan Kundera

*Empathy vs. sympathy: Empathy means you have the ability to understand and share the feelings of another.  By contrast, sympathy means feelings of pity and sorrow for someone else’s misfortune (https://en.oxforddictionaries.com/definition/empathy). Yes, it sucks to have a chronically-progressing neurodegenerative disorder like Parkinson’s. But it could be worse, really.

Empathy.  What a great word.  Try to be empathetic to me; you don’t have to become one with me, just strive to understand how I’m feeling.  Our bond will surely strengthen.  You may not be able to exactly feel what I’m feeling, but just trying says much to you, your inner processing, the soul of your humanity.

Please don’t pity me, that reduces the feelings between us.  Please don’t have sorrow or sadness for me, it weakens our ties. If you give me sympathy, you’ll never truly be able to grasp the extent and meaning of my Parkinson’s.  Parkinson’s is not my friend; however, having your friendship and understanding (empathy) instead of your pity (sympathy) will give me strength and help me deal on a more positive-front with this unrelenting disorder.

*This post is dedicated to the first-year medical students at the UNC School of Medicine. On Friday, May 5, I had the privilege and honor of being presented as a person-with-Parkinson’s in our Neurologic Block. They asked very specific questions in their attempt to understand Parkinson’s and to learn how I am living with this disorder. It was clear that they were trying to follow the advice of Dr. William Osler who said “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”

“Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy.”  Dean Koontz

What is the life expectancy of someone diagnosed with Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and Huntington’s disease? These neurodegenerative disorders are listed in ranked order of how many people are affected from most to least, respectively. Alzheimer’s typically progress over 2 to 20 years, and individuals live for 8 to 10 years after the diagnosis.  People who have Parkinson’s usually have the same average life expectancy as people without the disease.  Life expectancy from ALS is usually at least 3-4 years. The time from diagnosis  of Huntington’s to death is about 10 to 30 years.  Each of these disorders is uniquely different and unsettling to me; but your empathy, not your sympathy, will truly help me sail my boat along the shoreline for many more years.  Accept me with ‘my unique medical issues’, try to understand it. Your empathy will add stability to my battle; just watch.

“Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the wrong. Sometime in life you will have been all of these.” Lloyd Shearer

A novel engineering device is empathy-producing to someone with Parkinson’s: The whole story is revealed from watching this video (click here). Klick Labs in Toronto, Canada, has created the SymPulse Tele-Empathy Device. This device is capable of mimicking and producing the tremors and involuntary movements of someone with Parkinson’s in people without Parkinson’s. The video is quite powerful, you immediately sense the empathy.

The SymPulse Tele-Empathy Device is based on digitized muscle activity from electromyograms of Parkinson’s patients. The signal is unique for each person with Parkinson’s. When the person without Parkinson’s receives this novel voltage pattern, their muscles will contract exactly as found in the person with Parkinson’s. Developing such a device shows the deviant nature of Parkinson’s to disrupt/distort normal neuro-muscular circuitry.

This device could be used to increase empathy in doctors and other caregivers. And it could enable family members and loved-ones the unique opportunity to experience the actual tremor/involuntary movements of their special person with Parkinson’s. Company officials note that most people wear the device for at most a couple of minutes; turn off the device and they return to normal. Remember, there is no off-on switch for the person with Parkinson’s.  I can only imagine empathy evolving from this device when used on someone without Parkinson’s.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” Henri J.M. Nouwen

Cover photo credit: gsmnp.com/wp-content/uploads/View-of-Smoky-Mountains-from-Oconaluftee.jpg

Parkinson’s Awareness Month: Veterans Health Administration PD Video Series

“My motto was always to keep swinging. Whether I was in a slump or feeling badly or having trouble off the field, the only thing to do was keep swinging.” Hank Aaron

“Nothing worth having comes easy.” Theodore Roosevelt

Introduction: Several years ago, the Veterans Health Administration produced videos to educate/inform our veterans about Parkinson’s disease.   For more information, read about the VA Core Values and Mission Statement (click here); it is an admirable sentiment.

As we are living longer, so too are our veterans. Some service-related-experiences may have predisposed some of them to develop Parkinson’s.  All of these videos are available on YouTube.  However, since this is Parkinson’s awareness month, putting them all together might benefit others to better understand Parkinson’s.   I definitely learned something from watching these videos, they were all outstanding.

Each individual video features a veteran (frequently their care-partner too) who agreed to be videotaped (having done this type of interview myself, it is not an easy experience); I admire their courage to participate and to help educate all of us. Furthermore, the VA clinical and support staff were passionate and compassionate about their roles in dealing with our veterans with Parkinson’s.

“Losing the possibility of something is the exact same thing as losing hope and without hope nothing can survive.” Mark Z. Danielewski

Veterans Health Administration – My Parkinson’s Story:
My Parkinson’s Story:
Early Parkinson’s Disease [click here for video]

My Parkinson’s Story: Thinking and Memory Problems with Parkinson Disease [click here for video]

My Parkinson’s Story: Medications [click here for video] 

My Parkinson’s Story: Dyskinesias [click here for video] 

My Parkinson’s Story: Atypical [click here for video] 

My Parkinson’s Story: Driving [click here for video]

My Parkinson’s Story: Sleep Problems and Parkinson’s Disease [click here for video] 

My Parkinson’s Story: Genetics [click here for video] 

My Parkinson’s Story: Exercise [click here for video] 

My Parkinson’s Story: Environmental Exposure [click here for video]

My Parkinson’s Story: The Impact of Depression in Parkinson’s Disease [click here for video] 

My Parkinson’s Story: Impact of Falls and Parkinson’s Disease [click here for video]

My Parkinson’s Story: The Caregiver [click here for video] 

My Parkinson’s Story: Deep Brain Stimulation and Parkinson Disease [click here for video]

My Parkinson’s Story: Hospitalization [click here for video] 

My Parkinson’s Story: Speech and Swallowing [click here for video] 

My Parkinson’s Story: Advanced Parkinsons [click here for video]

“Not I, nor anyone else can travel that road for you. You must travel it by yourself. It is not far. It is within reach. Perhaps you have been on it since you were born, and did not know. Perhaps it is everywhere – on water and land.” Walt Whitman

“We can’t equate spending on veterans with spending on defense. Our strength is not just in the size of our defense budget, but in the size of our hearts, in the size of our gratitude for their sacrifice. And that’s not just measured in words or gestures.” Jennifer Granholm

Cover Photo Credit: http://wallpapersafari.com/w/Fy0h6Q/

Chapter 6: A Parkinson’s Reading Companion on Courage

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” Mary Anne Radmacher

“We can judge our progress by the courage of our questions and the depth of our answers, our willingness to embrace what is true rather than what feels good.” Carl Sagan

Précis: “Thought-filled Responses” is a part of my undergraduate course, “Biology of Blood Diseases”; students submitted quotes on (five or more) hope, courage, journey, persistence, positivity, strength, adversity, mindfulness, and life (for further details click here). This current post is Chapter 6 including all of their quotes about ‘courage’ [click here to read Chapter 1 (hope); click here to read Chapter 2 (life); click here to read Chapter 3 (strength); click here to read Chapter 4 (adversity); click here to read Chapter 5 (positivity)].

Courage in the presence of Parkinson’s:   Living with Parkinson’s takes courage because your enemy is within you, and you always feel its presence. Thus, your hourly-daily-effort to live-fully is a measure of your courage.  Your courage is shown by your effort to keep working,  by your attempt to exercise, and by doing all the things you loved to do before the diagnosis (these are but a few of the many courageous acts you do everyday); this is all very consistent with the words of Brené Brown “Courage is to tell the story of who you are with your whole heart.”  May these quotes about courage offer you encouragement to continue to confront this unforgiving disorder named Parkinson’s.

Courage:  I am pleased to present Chapter 6 about courage with my co-authors: Angle, Hannah; Arthur, Kallie; Artov, Michael; Bagley, Kendall; Batista, Kayla; Blaylock, Allison; Byrd, Emory; Cabell, Grant; Catalano, Michael; Clark, Kendall; Cossaart, Kristen; Culpepper, Houston; Das, Snigdha; Davis, Eric; Defazio, Stephanie; Doudnikoff, Alex; Dua, Shawn; Evans, Jessica; Evick, Andrew; Farooque, Tazeen; Ford, Kelsey; German, Zachary; Gouveia, Katie; Hall, Nikita; Isler, Victoria; Kirkley, Joel; Koutleva, Elitza; Laudun, Katie; Le, Kevin; Little, Sarah; Mackey, Josselyn; Macon, Briana; Maddox, Kaity; Marquino, Grace; Mattox, Daniel; Mcknight, Kyle; Mcmanus, Brenna; Mcshane, Sarah; Monkiewicz, Caroline; Nguyen, Michelle; Nguyen, Teresa; Olinger, Emily; Patel, Darshan; Patel, Dilesh; Patel, Jenny; Perez, Abby; Peters, Daniel; Quirin, Julia; Rawlins, Shelby; Raynor, Nathan; Renn, Matt; Scott, Alicia; Sherry, Alex; Shin, Christine; Stanton, Kate; Story, Charlotte; Swango, Summer; Szyperski, Caroline; Windley, Taylor; Wooley, Caleb; Xu, Alice; Yang, Michelle.

“The sun himself is weak when he first rises, and gathers strength and courage as the day gets on” Charles Dickens’s The Old Curiosity Shop

”Great things never came from comfort zones.” Anonymous

”I always wonder why birds stay in the same place when they can fly anywhere on the earth. Then I ask myself the same question.” Harun Yahya

“Success is never final. Failure is never fatal. It’s courage that counts.”  John Wooden

“Fear is a reaction. Courage is a decision.” Winston Churchill

“With courage you will dare to take risks, have the strength to be compassionate, and the wisdom to be humble. Courage is the foundation of integrity.” Mark Twain

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu

“No one has ever had the opportunity to be brave without first being afraid.”  Unknown

“I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand.  It’s when you know you’re licked before you begin, but you begin anyway and see it through no matter what.” Harper Lee, To Kill a Mockingbird

“A sword wields no strength unless the hand that holds it has courage.” Hero’s Shade

“You cannot swim for new horizons until you have courage to lose sight of the shore.” William Faulkner

“Courage is the most important of all the virtues because without courage, you cannot practice any other virtue consistently” Maya Angelou

“Courage, dear heart.” C.S. Lewis

“Therefore, do no worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34

“I have loved the stars too fondly to be fearful of the night.” Galileo

“At the end of the day, the fact that we have the courage to still be standing is reason enough to celebrate.” Grey’s Anatomy

“Today if you become frightened, instead become inspired.” Grey’s Anatomy

“You cannot swim for new horizons until you have courage to lose sight of the shore.” William Faulkner

“I’ve reached the point in my life where my brain switched from ‘you probably shouldn’t do that’ to ‘what the hell, let’s see what happens’.”

“Only those who will risk going too far can possibly find out how far one can go”  T.S. Eliot

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.” Eleanor Roosevelt

“The greatest battle is not physical but psychological. The demons telling us to give up when we push ourselves to the limit can never be silenced for good. They must always be answered by the quiet, the steady dignity that simply refuses to give in. Courage. We all suffer. Keep going.” Graeme Fife

 “Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.” Winston Churchill

“What would life be if we had no courage to attempt anything” Vincent Van Gogh

“Don’t ever let somebody tell you you can’t do something, not even me. Alright? You dream, you gotta protect it. People can’t do something themselves, they wanna tell you you can’t do it. If you want something, go get it. Period.” Chris Gardner from The Pursuit of Happyness

“Courage is the most important of all the virtues because without courage, you can’t practice any other virtue consistently.” Maya Angelou

“It’s better to cross the line and suffer the consequences than to just stare at the line for the rest of your life.”

“Take into account that great love and great achievements involve great risk.” Dalai Lama

“Courage is not the absence of fear but rather the judgment that something is more important than fear; the brave may not live forever but the cautious do not live at all.”  Meg Cabot

“Man cannot discover new oceans unless he has the courage to lose sight of the shore.” Andre Gide

“Courage is the most important of all the virtues, because without courage you can’t practice any other virtue consistently. You can practice any virtue erratically, but nothing consistently without courage.” Maya Angelou

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” Nelson Mandela

“It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends.”  Albus Dumbledore, Harry Potter and the Sorcerer’s Stone

“You go on by doing the best you can. You go on by being generous. You go on by being true. you go on by offering comfort to others who can’t go on. You go on by allowing the unbearable days to pass and by allowing the pleasure in other days. You go on by finding a channel for your love and another for your rage.”  Cheryl Strayed

Cover photo credit: http://www.judithsfreshlook.com/wp-content/uploads/2012/07/untitled-4213.jpg

Chapter 4: A Parkinson’s Reading Companion on Adversity

“Hardships often prepare ordinary people for an extraordinary destiny.” C.S. Lewis

“Opportunities to find deeper powers within ourselves come when life seems most challenging.” Joseph Campbell 

Précis: The students from my undergraduate course, “Biology of Blood Diseases”, submitted quotes about these words: hope, courage, journey, persistence, positivity, strength, adversity, mindfulness, and life (for further details click here). This blog post is Chapter 4 including all of their quotes about ‘adversity’ [click here to read Chapter 1 (hope); click here to read Chapter 2 (life); click here to read Chapter 3 (strength)].

Adversity and Parkinson’s: Merriam-Webster defines adversity as  a state or instance of serious or continued difficulty or misfortune; adversity certainly comes with Parkinson’s. Most people do not have Parkinson’s yet we typically all have had some kind of adversity in our lives. How we deal with adversity and how we recover from adversity can certainly help define our lives. May these quotes on adversity enable you to withstand the daily annoyances from Parkinson’s and may they help others in the midst of adversity.

Adversity:  I am pleased to present Chapter 4 about adversity with my co-authors: Angle, Hannah; Arthur, Kallie; Artov, Michael; Bagley, Kendall; Batista, Kayla; Blaylock, Allison; Byrd, Emory; Cabell, Grant; Catalano, Michael; Clark, Kendall; Cossaart, Kristen; Culpepper, Houston; Das, Snigdha; Davis, Eric; Defazio, Stephanie; Doudnikoff, Alex; Dua, Shawn; Evans, Jessica; Evick, Andrew; Farooque, Tazeen; Ford, Kelsey; German, Zachary; Gouveia, Katie; Hall, Nikita; Isler, Victoria; Kirkley, Joel; Koutleva, Elitza; Laudun, Katie; Le, Kevin; Little, Sarah; Mackey, Josselyn; Macon, Briana; Maddox, Kaity; Marquino, Grace; Mattox, Daniel; Mcknight, Kyle; Mcmanus, Brenna; Mcshane, Sarah; Monkiewicz, Caroline; Nguyen, Michelle; Nguyen, Teresa; Olinger, Emily; Patel, Darshan; Patel, Dilesh; Patel, Jenny; Perez, Abby; Peters, Daniel; Quirin, Julia; Rawlins, Shelby; Raynor, Nathan; Renn, Matt; Scott, Alicia; Sherry, Alex; Shin, Christine; Stanton, Kate; Story, Charlotte; Swango, Summer; Szyperski, Caroline; Windley, Taylor; Wooley, Caleb; Xu, Alice; Yang, Michelle.

“We cannot change the cards we are dealt, just how we play the hand.” -Randy Pausch, The Last Lecture 

“I know not all that may be coming, but be it what it will, I’ll go to it laughing.” -Herman Melville’s Moby Dick

“Success is never so interesting as struggle- not even to the successful” Willa Cather

“Adversity introduces a man to himself” Albert Einstein

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” Maya Angelou

“Education is an ornament in prosperity and a refuge in adversity.” Aristotle

“If the road is easy, you’re likely going the wrong way.”  Terry Goodkind

 “The flower that blooms in adversity is the most rare and beautiful of all.” The Emperor Mulan

It’s not the load that breaks you down. It’s the way you carry it.” C.S. Lewis

“One day, in retrospect, the years of struggle will strike you as the most beautiful.” Sigmund Freud

“Although the world is full of suffering, it is also full of overcoming it.” Helen Keller

“Only in the darkness can you see the stars.” Martin Luther King Jr.

“Though my soul may set in darkness, it will rise in perfect light; I have loved the stars too fondly to be fearful of the night.” The Old Astronomer and His Pupil by Sarah William

“Life is tough my darling, but so are you.” Stephanie Bennett-Henry

“Everyone goes through adversity in life, but what matters is how you learn from it.” Lou Holtz

“Sometimes it is the people no one imagines anything of who do the things no one can imagine.” “The Imitation Game”

“The pain you feel today is the strength you feel tomorrow. For every challenge encountered there is opportunity for growth.”  Unknown

“If you live long enough, you’ll make mistakes. But if you learn from them, you’ll be a better person. It’s how you handle adversity, not how it affects you. The main thing is never quit, never quit, never quit.”  William J. Clinton 

“When written in Chinese, the word “crisis” is composed of two characters – one represents danger, and the other represents opportunity.” John Fitzgerald Kennedy

“The deeper that sorrow carves into your being, the more joy you can contain.” Kahlil Gibran

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Martin Luther King Jr.

 “Education is the most powerful weapon which you can use to change the world.” Nelson Mandela

“Everyone wants happiness; no one wants pain. But you can’t make a rainbow without a little rain.” Anonymous

“Adversity makes men, and prosperity makes monsters.” Victor Hugo

“If opportunity doesn’t knock, build a door” Milton Berle

“Never to suffer would never to have been blessed.” Edgar Allan Poe

“It’s always darkest before the dawn.” Thomas Fuller

 “The next time you face difficulty, or even if you just need a reminder of who you are, go outside on a clear night, look up at the stars, and think of how great it is that of all the places in the universe, you are right where you are. And as you’re looking up, put your hand on your heart and know that no one else, *no one*, has your particular purpose or opportunities.” (from a dear friend, Randy Mullis)

“The flower that blooms in adversity is the rarest and most beautiful of all.” Mulan

“Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant.” Horace

“Whatever you fight, you strengthen, and what you resist, persists.” Eckhart Tolle

Let me embrace thee, sour adversity, for wise men say it is the wisest course.” William Shakespeare

“Adversity is the diamond-dust that the universe uses to polish its brightest stars.” Thomas Carlyle

“It always seems impossible until it’s done.” Nelson Mandela

“Crying helps me slow down and obsess over the weight of life’s problems.” Sadness, Inside Out

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” – Elizabeth Kubler-Ross

Cover photo credit: http://www.beaconhouseinnb-b.com/wp-content/uploads/dawn-at-spring-lake-beach-bill-mckim.jpg