Category Archives: Personal Reflection

10 “P-Words” That Will Help Your Career Even in the Presence of Parkinson’s

“Enjoy the journey, enjoy every moment, and quit worrying about Winning and losing.” Matt Biondi

“Enjoy the journey as much as the destination.”  Marshall Sylver

Introduction:  It has been a month since my last blog post.  Trips to Arizona, California, Alabama, and Florida consumed much of the month.  I spent time with relatives, dear old friends, and played many rounds of golf.  The spring semester was most enjoyable but also it was quite consumptive.  Life-changes.  And I just needed a short break.

10 “P-Words” That Will Help Your Career:  I found a piece of paper recently that had a bunch of hand-written words that started with the letter “P”.  These words were all focused in the mindset of how to achieve/sustain success in the world of medical academics/research in a university setting.  Use these P-words while you advance/survive/navigate/succeed through your career.

At various times during your career, some words may take precedence depending on the situation.  However, if you consider the words in the form of a melody, they will all significantly contribute to the symphony of your work-life.  There is no doubt there are many other words we could cite that help you navigate work, that allow you to succeed in your career.  My list is just a start or an attempt to help you focus your energies with the goal of advancement and happiness in your work world. May this list help you focus and achieve further in your professional career.

  1. Passionate (Capable of, having, or dominated by powerful emotions):
    “There is no greater thing you can do with your life and your work than follow your passions – in a way that serves the world and you.” Richard Branson
  2. Patient (Tolerant; understanding):
    “Never cut a tree down in the wintertime. Never make a negative decision in the low time. Never make your most important decisions when you are in your worst moods. Wait. Be patient. The storm will pass. The spring will come.”  Robert H. Schuller
  3. Perseverance (Continued steady belief or efforts, withstanding discouragement or difficulty):
    “Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”  Thomas A. Edison
  4. Persistent (Continuance of an effect after the cause is removed):
    “You just can’t beat the person who never gives up.” Babe Ruth
  5. Positivity (Characterized by or displaying certainty, acceptance, or affirmation):
    “There is little difference in people, but that little difference makes a big difference. The little difference is attitude. The big difference is whether it is positive or negative.”  W. Clement Stone
  6. Power (The ability or capacity to act or do something effectively):
    “You must try to make the most of all that comes but also don’t forget to learn a lot of all that goes.” William C. Brown
  7. Prepared (To make ready beforehand for a specific purpose):
    “The best preparation for good work tomorrow is to do good work today.” Elbert Hubbard
  8. Principled(s) (Based on, marked by, or manifesting principle):
    “I wish I had been wiser. I wish I had been more effective, I wish I’d been more unifying, I wish I’d been more principled.” Bill Ayers
  9. Productive (Effective in achieving specified results):
    “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”  Francis of Assisi
  10. Purposeful (Determined; resolute):
    “All life is a purposeful struggle, and your only choice is the choice of a goal.”  Ayn Rand

The 10 “P-Words” Could Assist the Journey (definitions from the Free Dictionary): You may have a different definition for these words and you may know of better quotes given for each word. Good!  The balance, guidance and focus of each word as they are applied to work is what matters.

I remember reading in 1989 “The 7 Habits of Highly Effective People” by Stephen R. Covey, and found it useful.  But in hindsight, my mind functions in a simpler more scientific manner, words work better to focus my mind than did chapters and detailed stories.  Covey has sold more than 25 million copies of his book; clearly his description his ability to provide a powerful narrative was most successful – I did learn a lot from his book.  However, this list of words simply spells out a way to help coordinate the complexity of a career.

The 10 “P-Words” Work in the Presence of Parkinson’s:  I have had Parkinson’s for the past 5-6 years, and I am still working full-time.  No doubt Parkinson’s affects each person differently; it allows some to continue to work and others must stop.   Some of the effects of Parkinson’s on my work: I type slower than I used to, stiffness takes over if I sit too long, and at times I lose my focus.  I remain hopeful that even under the influence of Parkinson’s I can stay focused on education and science until its time.  There are many great things influencing my life and work.   I want to be in the driver’s seat to get to that point when I can say “I’ve done enough!”. Simply put, I refuse to surrender to Parkinson’s. If you are still working, I’m happy for you.  Probably for those of us with Parkinson’s, the key P-words are to stay positive, remain patient, always persevere, and never lose your passion.

“When you are a young person, you are like a young creek, and you meet many rocks, many obstacles and difficulties on your way. You hurry to get past these obstacles and get to the ocean. But as the creek moves down through the fields, it becomes larges and calmer and it can enjoy the reflection of the sky. It’s wonderful. You will arrive at the sea anyway so enjoy the journey. Enjoy the sunshine, the sunset, the moon, the birds, the trees, and the many beauties along the way. Taste every moment of your daily life.”  Nhat Hanh

Cover photo credit: https://plus.google.com/108408866746991947808\s

 

Driving Under the Influence of Parkinson’s

“Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?” George Carlin

“If all the cars in the United States were placed end to end, it would probably be Labor Day Weekend.” Doug Larson

The Dilemma: At some age in our life, maybe, just maybe, we could lose the privilege of driving our car/truck.  If you are living with Parkinson’s, depending on the individual, losing the legal right to drive your motor vehicle might/could happen at an even earlier age.  A discussion of driving under the influence of Parkinson’s is presented here.

“I love driving cars, looking at them, cleaning and washing and shining them. I clean ’em inside and outside. I’m very touchy about cars. I don’t want anybody leaning on them or closing the door too hard, know what I mean?” Scott Baio

The Michon model of normal driving behavior:  In 1985, Michon proposed that drivers need to conduct problem-solving while driving; he divided it  into three levels of skill and control. The model includes strategic (planning), tactical (maneuvering), and operational (control) levels.   When you think about it driving really is a complicated task.   The strategic level is basically the general route and planning needed to successfully navigate the motor vehicle.  The tactical and control levels involve the individual driving circumstances and how one responds and our responsiveness to the action of driving.   And of course, it’s quite obvious, that unsafe driving is operating a motor vehicle in an unsafe manner regardless of your health status. Driving safely is important for the individual as well as for the people around you; thus, it is a serious task to evaluate someone’s competency to drive a motor vehicle. Shown below is a schematic drawing of the Michon model of normal driving behavior.

17.04.07.Driving.Model

“The one thing that unites all human beings, regardless of age, gender, religion, economic status, or ethnic background, is that, deep down inside, we all believe that we are above-average drivers.” Dave Barry

Decision-making while driving:   Below are some traffic signs that we might encounter in our usual driving pattern depending on where we live. When you think about decision-making you’re in your lane you’re driving down the road and you see signs like this, then what?  You can see how it takes all three levels of driving competency to navigate successfully while driving a motor vehicle in a complex maneuver.  Now add the complications of someone with Parkinson’s, you may need to re-think the entire situation. What this says is that when you’re driving a motor vehicle you’re trying to integrate many levels of sensory, motor and cortical function to the process. In Parkinson’s, we may have some sort of motor skill/task impairment, potentially mixed with a minor cognitive disorder, and further clouded by traditional drug therapy. Who makes the decision for the patient with Parkinson’s about being able to continue to drive?  Not an easy answer.

“Some beautiful paths can’t be discovered without getting lost.” Erol Ozan

 Possible problems that could occur while driving with Parkinson’s: The control or operational level of driving a car can be influenced by motor defects experienced by many with Parkinson’s, including rigidity, tremor, bradykinesia and dyskinesia. Futhermore, non-motor deficits could impair both route planning, strategic and tactical levels, and these would include cognitive decline, neuropsychiatric symptoms and/or visual impairment. And on top of that in the elderly population, many people with Parkinson’s have additional co-morbidity that could also contribute to diminish our ability to drive a motor vehicle. Thinking about just one aspect, slowness in cognitive function, the inability to make a decision quickly could lead to poor performance time and might affect driving in someone with Parkinson’s. Alternatively, you may have none of these problems and will be driving for many more years. But as we all start to exhibit signs and symptoms of motor and non-motor deficits, this will eventually become an important issue for each of us to deal with at some point in time.

“Always focus on the front windshield and not the review mirror.” Colin Powell

 What are some criteria for determining our fitness to drive a motor vehicle when you have Parkinson’s? In a very nice review, Jitkritsadakul and Bhidayasiri suggest there are five different red flags that should tell our neurologist that we may have an impairment that should limit our driving of motor vehicles. First, these include our clinical history, which would be a history of accidents, sleeping attacks while driving and combined with the daily dose amount of levodopa. Next would be a questionnaire to determine our level of daily sleepiness. Third, a motor assessment skills test. Fourth, a cognitive assessment. And fifth would be a visual assessment.  Look above at the Michon driving schematic and think about the three levels of skill required for driving and substitute someone with Parkinson’s and how that could diminish one or more of the skill sets over time.  What this says to me is that through a combination of family and friends and carepartner,  along with the advice of our neurologist, one should be able to make a critical assessment of whether or not we should continue to drive.

“Driving your car through deep pools of flood water is a great way of making your car unreliable. Smart people turn around and avoid it.” Steven Magee

A love of motor vehicles (a personal expression):  I grew up loving automobiles; and living on Air Force Bases, I saw many different types of sports cars  (e.g., Corvette, Jaguar, Triumph, Porsche, Shelby Mustang, Ferrari- you just had to believe that Air Force pilots live for speed in the air and their cars showed it on the ground). I can remember in 1964 (I was 11 years old) going to the Ford dealership with my dad to see the very first Ford Mustang cars; thinking how beautiful they were and remembering my dad’s comment that was a lot of car for $2,400.   I still have vivid memories of riding with my dad (yes, he was a former pilot) in his ~1962 white Porsche. I can still remember in 1971 getting my first car, a 1968 Chevrolet Camaro (red interior and red exterior) with standard transmission (three on the floor) and powered by a 327 cubic inch V-8 engine. [Please note, the pictures below are representative images because I could not find any actual old photos of these cars]

IMG_3832

Over the decades, I can recall the weekly car-washing sessions, typically on Saturday mornings. With the exception of one car in the early 1980’s, I have loved and truly enjoyed the automobiles I’ve driven.  Like many people I’ve named all my cars; my two current automobiles are named Raven and Portia. I still enjoy driving a standard shift car using the clutch that requires both cognitive function and motor skills to navigate the automobile. I have always thought “It’s going to be a cold day in hell before they take my car away”; however, it’s a reality in the future I now face with Parkinson’s. In fact one of the very first people I ever told about my Parkinson’s several years ago, the very first question she asked me was “Are you still able to drive?”  In summary, driving under the influence of Parkinson’s is something we all will need to consider with time; I wish you well with your driving experiences.

“Driving a car provides a person with a rush of dopamine in the brain, which hormonal induced salience spurs modalities of creative and critical thinking regarding philosophical concepts such as truth, logical necessity, possibility, impossibility, chance, and contingency.” Kilroy J. Oldster

https://www.ncbi.nlm.nih.gov/pubmed/27729986

1.    Jitkritsadakul O, Bhidayasiri R. Physicians’ role in the determination of fitness to drive in patients with Parkinson’s disease: systematic review of the assessment tools and a call for national guidelines. Journal of Clinical Movement Disorders. 2016;3(1):14. doi: 10.1186/s40734-016-0043-x.

Cover photo credit: s-media-cache-ak0.pinimg.com/564x/22/d1/75/22d175ac53a0a5dbb04e77ae52a49c52.jpg

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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

Sleep Disturbances in Parkinson’s and the Eagles Best Song Lyrics

“There is a time for many words, and there is also a time for sleep.” Homer, The Odyssey

“Man is a genius when he is dreaming.” Akira Kurosawa

Précis: There are many manifestations associated with Parkinson’s; one of the more frustrating aspects is the alteration of sleep patterns.  Herein is a brief overview of sleep disturbances in Parkinson’s.  And in a recent evening of insomnia, I compiled a list of some of my favorite lyrics by the American rock band “the Eagles”.

Sleep problems associated with Parkinson’s: The vast majority, >90%, of people-with-Parkinson’s have some sleep-related problems. The factors related to disrupted sleep pattern in Parkinson’s can broadly be classified as follows:  (1) Parkinson’s-related; (2) treatment-related; (3) psychiatric-related; and (4) other sleep-related manifestations. For further review, please see the following articles: Garcia-Borreguero et al., “Parkinson’s disease and sleep” (click here for the PubMed citation); Barone et al., “Treatment of nocturnal disturbances and excessive daytime sleepiness in Parkinson’s disease” (click here for the PubMed citation) and Chaudhuri et al. “Non-motor symptoms of Parkinson’s disease: diagnosis and management” (click here for the PubMed citation). An expanded description of some of the sleep disturbances in Parkinson’s is given below:

  • Parkinson’s related motor symptoms that could alter sleep patterns include disruption from tremor, difficulty in turning over in bed, impairment of voluntary movement (akinesia), abnormal muscle tone that results in muscular spasm and abnormal posture (dystonia), and painful cramps.
  • Therapy-related nocturnal disruption of sleep from legitimate Parkinson’s drugs, e.g., dopamine agonists, levodopa/carbidopa, and certain antidepressants. The known side-effects of the ‘gold-standard’ of treatment levodopa/carbidopa include: dizziness, loss of appetite, diarrhea, dry mouth, mouth and throat pain, constipation, change in sense of taste, forgetfulness or confusion, nervousness, nightmares, difficulty falling asleep or staying asleep, and headache.
  • A significant portion of people-with-Parkinson’s exhibit psychiatric symptoms.  The most frequent manifestations, which could alter one’s sleep pattern include vivid dreams, insomnia, hallucinations, psychosis, panic attacks, depression, and dementia.
  • Finally, there are other sleep-related disorders linked to Parkinson’s, which include excessive daytime sleepiness, insomnia, restless legs syndrome, periodic leg movements, and sleep apnea.

“Daytime sleep is like the sin of the flesh; the more you have the more you want, and yet you feel unhappy, sated and unsated at the same time.” Umberto Eco, The Name of the Rose

Sleep-related problems from Parkinson’s: Many people-with-Parkinson’s have a difficult time sleeping throughout the night. With or without Parkinson’s, a good night’s rest is critical to feeling well. Thus, understanding and treating the cause of the sleep-related disorder from Parkinson’s is important.  The list described above is somewhat intimidating; especially in trying to sort out the primary-cause(s) of sleep problems from Parkinson’s. My sleeping problems seem to be related to the timing of when I take levodopa/carbidopa (I need to re-focus my effort to take it at the right time each day; not late in the evening), renew my nightly melatonin therapy (3 mg capsule 1-2 h before sleep); sleep apnea (now being treated by CPAP), and stress related to my work deadlines/professional goals-expectations (now being dealt with by increased time for exercise and better use of mindfulness-meditation).

Dealing with sleep-related issues from Parkinson’s is both complex and frequently multi-factorial. Therefore, given below are some websites that may offer guidance and suggestions to better handle your sleep disorder from Parkinson’s:

  • Nighttime Parkinson’s issues and how they can be treated (click here);
  • Sleep Disorders and Parkinson’s Disease (click here);
  • Sleep Disturbances (click here);
  • Parkinson’s Disease and Sleep (click here);
  • Problems with Sleep at Night (click here);
  • And from this blog: Sleep, Relaxation, and Traveling (click here); 7 Healthy Habits For Your Brain (click here);  and try dealing with the stress from and the reality of Parkinson’s using Contentment, Gratitude, And Mindfulness (click here).

“Am I sleeping? Have I slept at all? This is insomnia.” Chuck Palahniuk, Fight Club

“Frank, what’s your favorite line from an Eagles song?”:  A recent Sunday morning on the golf course, my golf buddy and good friend Kim asked Frank, what’s your favorite line from an Eagles song?”; yes, it came our of nowhere.  My initial response was “You can see the stars and still not see the light”.  He quickly replied “We live our lives in chains and we never even know we have the key.” And I followed up with “I’m standing on a corner in Winslow Arizona and such a fine sight to see.”  We talked briefly about the Eagles from the early 1970’s and their song lyrics; however, the thought stayed with me.  If you need a reminder about the Eagles: “The Eagles were an American rock band formed in Los Angeles in 1971 by Glenn Frey, Don Henley, Bernie Leadon, and Randy Meisner. With five number-one singles, six Grammy Awards, five American Music Awards, and six number one albums, the Eagles were one of the most successful musical acts of the 1970s.” [for more information, see https://en.wikipedia.org/wiki/Eagles_(band)%5D

“I grew up with another pretty darn good writer: Glenn Frey of the Eagles. We were very good friends, and we kind of studied it together.” Bob Seger

The lyrics from the Eagles songs take us to the limit(s) of our imagination: For me, great music has a memorable beat and meaningful lyrics; and you can just remember these songs years later. The Eagles were wonderful musicians, harmonized beautifully, and wrote songs with a lot of imaginative/descriptive lyrics. The other night, I started listening to the Eagles and decided to compile a list of some of their best (i.e., my favorite) lyrics. I had iTunes open and would start listening and then search for lyrics to certain songs (those that brought back the most memories).  I also used my Echo Dot by saying things like “Alexa, play Desperado by the Eagles”.   At 5:00 AM the next morning, I had 27 favorite lyrics from 24 songs; the result of a very fun and reflective evening.  There is no accompanying narrative to the included lyrics, just the song title/album title/album cover.  All lyrics for the songs by the Eagles were found here: http://www.azlyrics.com/

 “The records in the house I really remember were, well, Glen Campbell’s ‘Wichita Lineman’ and ‘Galveston.’ Even as a kid, I knew these songs were glorious. My dad also had records by Merle Haggard, Charley Pride, Waylon Jennings, and then there was also the Eagles and Don Henley. Anything Texas, which includes Don Henley, was big.”  Keith Urban

Album: “The Eagles” (1972)

01-eagles-1972

“Take It Easy”
I gotta know if your sweet love is
gonna save me
We may lose and we may win though
we will never be here again

“Peaceful Easy Feeling”
I like the way your sparkling earrings lay,
Against your skin, it’s so brown.
And I wanna sleep with you in the desert tonight
With a billion stars all around.

“Most Of Us Are Sad”
Most of us are sad
No one lets it show
I’ve been shadows of myself
How was I to know?

Most of us are sad it’s true
Still we must go on

Album: “Desperado” (1973)

02-desperado-1973

“Desperado”
It may be rainin’, but there’s a rainbow above you
You better let somebody love you (let somebody love you)
You better let somebody love you before it’s too late

“Saturday Night”
What a tangled web we weave
Go ’round with circumstance
Someone show me how to tell the dancer
From the dance

“Doolin-Dalton / Desperado Reprise”
The queen of diamonds let you down,
She was just an empty fable
The queen of hearts you say you never met

Album: “On The Border” (1974)

03-on-the-border-1974

“Already Gone”
Just remember this, my girl, when you look up in the sky
You can see the stars and still not see the light (that’s right)

“Already Gone”
So often times it happens that we live our lives in chains
And we never even know we have the key

“My Man”
No man’s got it made till he’s far beyond the pain
And we who must remain go on living just the same

“The Best Of My Love”
I’m goin’ back in time
And it’s a sweet dream
It was a quiet night
And I would be all right
If i could go on sleepin’

“The Best Of My Love”
But here in my heart I give you the best of my love

Album: “One Of These Nights” (1975)

04-one-of-these-nights-1975

“One Of These Nights”
The full moon is calling
The fever is high
And the wicked wind whispers
And moans

“Take It To The Limit”
If it all fell to pieces tomorrow
Would you still be mine?

“Lyin’ Eyes”
Ain’t it funny how your new life didn’t change things
You’re still the same old girl you used to be

Album: “Hotel California” (1976)

06-hotel-california-1976

“Victim Of Love”
Some people never come clean
I think you know what I mean
You’re walkin’ the wire, pain and desire
Looking for love in between

“Hotel California”
“Please bring me my wine”
He said, “We haven’t had that spirit here since nineteen sixty nine”
And still those voices are calling from far away,
Wake you up in the middle of the night

“Hotel California”
Some dance to remember, some dance to forget

“New Kid In Town”
You look in her eyes; the music begins to play
Hopeless romantics, here we go again

“Wasted Time”
And maybe someday we will find , that it wasn’t really wasted time

Album: “The Long Run” (1979)07-the-long-run-1979

“I Can’t Tell You Why”
Aren’t we the same two people who live
through years in the dark?
Ahh…
Every time I try to walk away
Something makes me turn around and stay
And I can’t tell you why

“The Sad Cafe”
Some of their dreams came true,
some just passed away
And some of them stayed behind
inside the Sad Cafe.

Album: “Eagles Live” (1980)08-eagles-live-1980

“Seven Bridges Road”
There are stars in the Southern sky
And if ever you decide
You should go
There is a taste of thyme sweetened honey
Down the Seven Bridges Road

Album: “Hell Freezes Over” (1994)

10-hell-freezes-over-1994

“Get Over It”
Complain about the present and blame it on the past
I’d like to find your inner child and kick its little ass

“Love Will Keep Us Alive”
I was standing
All alone against the world outside
You were searching
For a place to hide
Lost and lonely
Now you’ve given me the will to survive
When we’re hungry, love will keep us alive

“Learn To Be Still”
Now the flowers in your garden
They don’t smell so sweet
Maybe you’ve forgotten
The heaven lying at your feet

“Pretty Maids All In A Row”
Why do we give up our hearts to the past?

 Album: “Long Road Out Of Eden” (2007)

12-long-road-out-of-eden-2007

“It’s Your World Now”
A perfect day, the sun is sinkin’ low
As evening falls, the gentle breezes blow
The time we shared went by so fast
Just like a dream, we knew it couldn’t last
But I’d do it all again
If I could, somehow
But I must be leavin’ soon
It’s your world now

“I’ve dreamed a lot. I’m tired now from dreaming but not tired of dreaming. No one tires of dreaming, because to dream is to forget, and forgetting does not weigh on us, it is a dreamless sleep throughout which we remain awake. In dreams I have achieved everything.” Fernando Pessoa

Cover photo credit: https://s-media-cache-ak0.pinimg.com/originals/e5/aa/eb/e5aaeb8a5363fdeacccb567becee86b6.jpg

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2016 Whitehead Lecture: Advice, Life Stories and the Journey with Parkinson’s

“In giving advice I advise you, be short.” Horace

“The journey is what brings us happiness not the destination.” Dan Millman

Introduction: Last month, I presented the Whitehead Lecture to the UNC School of Medicine (SOM).  Here is what that means: “The annual Whitehead Lecture serves as an unofficial convocation for the School of Medicine. It is named in honor of Dr. Richard Whitehead, dean of the School of Medicine from 1890 to 1905. The Whitehead Lecturer is chosen by the SOM medical student governing body (Whitehead Medical Society). The selection is based on qualities of leadership, dedication, and devotion to medicine and teaching. Being elected to deliver the Whitehead Lecture is among the highest honors for faculty members at the School of Medicine.” (excerpted from https://www.med.unc.edu/md/events-awards/academic-calendars-events/whitehead-lecture).

In my 30-something year academic career at UNC-CH this was the biggest honor I’ve  received from the School of Medicine.  Here is a link to the news article written about my ~15-min lecture and the other teaching awards given to faculty, residents/fellows, and medical students (click here).

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Themes of Advice:  Below is a summary of the advice I gave to UNC-CH medical students to help them through their medical school journey (realizing I’m not a physician but a medical educator/biomedical researcher).  The lecture was divided up into 4 chapters: Chapter 1: Conflict of Interest Statement (this was done to start lightheartedly and to ‘try’ to be funny); Chapter 2: Core Values Learned from Growing up an “Air Force Brat” (childhood memories of my dad, Col. Church)Chapter 3: Life Stories and Advice Using Words that Begin with “H” (I  made a word-cloud with numerous words/phrases, e.g., Hope, Happy, Hospital, and Healthy Habits Harbor Happiness); and Chapter 4: Conclusions.

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The advice/stories were accompanied by numerous pictures and my own personal-life-events to emphasize my side of my own advice.  Advice I tried to convey to the medical students regarding my Parkinson’s disease was as follows: (a) acceptance and adaptation while still living positively; (b) adversity is rarely planned but you must be proactive as it accompanies life; and (c) a wide range of illness (from good to bad) accompanies most disorders; thus, it matters how you approach and treat each individual person (patient) with every disorder.

“My definition of success: When your core values and self-concept are in harmony with your daily actions and behaviors.” John Spence

“Never let your head hang down. Never give up and sit down and grieve. Find another way.” Satchel Paige

Chapter 1: Conflict of Interest Statement:

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Chapter 2: Core Values Learned from Growing up as an “Air Force Brat:

slide1Core Value of Integrity:
A cornerstone of my dad’s influence on me was integrity, to always be honest.
Everything I did growing up needed teamwork and integrity added strength to each team.
•Your integrity leads you forward.
“Be as you wish to seem.” Socrates

Core Value of Service:
The USAF interpretation of service is a commitment to serve your country before self.
My commitment to service and to helping others is through education and biomedical research.
•Your own service enriches your life.
“To work for the common good is the greatest creed.” Albert Schweitzer

Core Value of Excellence:
The core value of excellence revolves around doing the task proudly and right.
My dad instilled in me the notion to work hard, centered on excellence because the task mattered no matter the importance of the task.
Through this same excellence, your life matters.
“Excellence is doing ordinary things extraordinarily well.” John W. Gardner

Chapter 3: Life Stories and Advice Using Words that Begin with “H”:

slide08Help/Helpful/Helped:
There will be times when classmates, team members, and patients ask you for help/advice; always try to be helpful.
You may need to be helped on some topic-issue; that is totally okay, you are not expected to do it all by yourself.
“If
you light a lamp for somebody, it will also brighten your path.” Gautama Buddha

Colleagues Who Have Helped Me To Become A Better Educator:
A very important part of my career is centered around medical education.  I am fortunate to have colleagues who are gifted teachers, who serve as wonderful role models, and who have given me sound advice/feedback on new teaching strategies and educational ideas.
This group includes Dr. Alice Ma, Dr. Tom Belhorn, SOM Teaching Champions (Dr. Kurt Gilliland, Dr. Ed Kernick, Dr. Gwen Sancar, Dr. Arrel Toews, Dr. Marianne Meeker, Dr. Sarah Street and this group included me), Dr. Joe Costello, Johanna Foster and Katie Smith.
Since joining the Department of Pathology and Laboratory Medicine as an Assistant Professor (1987), I have had the privilege of teaching ~6,000 students (26 years of medical students x ~170 students/year = 4,420; 23 years of graduate students x ~20 students/year = 460; and 20 years of ~75 undergraduates/year = 1,500).

Find Your Holy Grail in Higher Education:
Challenge yourself, be goal-directed and discover where your passion resides (it could be patient care, research, education, service, policy, outreach, etc.).
Stay engaged in pursuit of your hallmark in higher education, which becomes your very own Holy Grail.
If you’re not happy, keep searching.
“What is known as success assumes nearly as many aliases as there are those who seek it. Like the Holy Grail, it seldom appears to those who don’t pursue it.” Stephen Birmingham

My Holy Grail in Higher Education (Hemostasis-Thrombosis Research):
34 years ago, 1982, I began my postdoctoral fellowship in the laboratory of Dr. Roger Lundblad. Since 1986, as a basic biomedical researcher in the Department of Pathology and Laboratory Medicine [Research Assistant Professor (1985-1986), Assistant Professor (1987-1994), Associate Professor (with tenure, 1994-1999), and Professor (with tenure, 1999-present)] , I have had a wonderful and enriching academic research career that has helped train over 100 scientists: 17 graduate students; 12 postdoctoral fellows; 17 medical students; and 65 undergraduates.
My research (Holy Grail) is centered on:
Biological Chemistry of Coagulation Proteases and their Serine Protease Inhibitors (Serpins);
-Aging
and Senescence-linked to the Pathophysiology of Venous
Thrombosis;
-Funding through NIH (NHLBI, NIA, and NINDS), American Heart Association, and Susan G. Komen for the Cure.

Shown below left is the antithrombin/thrombin/heparin complex and below right, a 30-year history of some of the former/current lab personnel (1987, 2003, and 2016).

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Handle Adversity in Your Journey:
We have expectations of what life should be like and what it should offer us; instead, accept what life gives you at the moment.
When life presents an obstacle, do your best to
handle adversity in your journey.
Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” Bernice Johnson Reagon

slide17Handling Adversity in My Journey:
Parkinson’s is a slowly progressing neurodegenerative disorder from the loss of dopamine-producing cells.
Dealing with an incurable disease like Parkinson’s is different than living with a terminal illness; you must accept that it’s part of your life for years to come.
Strive to live-forward, and always remember that we’re still in the driver’s seat of our world. Live decisively even as we accept the problems from Parkinson’s.” Frank C. Church

slide19Home Is Where The Heart Is:
1.Home is where the heart is. You love the place best which you call your home. That is where your heart lives.
2.Home is where the heart is. Wherever you feel most at home is where you feel you belong. That is where your heart is.
3.Your home may change many times over the coming years. Let your heart tell you where your home is.

Home Is Where My Heart Is (or Has Been for the Past 50 Years):
On a tennis court and on a golf course;
In a research laboratory and in a classroom teaching;
With family/loved ones.
“Let your heart tell you where your home is.”  Frank C. Church

home

Health (Heal, Healed, Healer):
Your foundation of knowledge is expanding to allow you to make decisions related to someone’s health.
You’ll likely encounter a spectrum of illness in your patients; health is like a rheostat that ranges from good to bad, mild to severe. Remember, you are treating a person with a disorder/illness.
“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” William Osler

Health (Heal, Healed, Healer) From My Perspective With Parkinson’s:
A Google search for “Parkinson’s disease: Images” shows these drawings from the 1880’s are still very prevalent (below left panel).
Yes, they accurately show the Cardinal signs of Parkinson’s: tremor, rigidity from muscle stiffness, bradykinesia (slowness of movement), postural instability, and facial masking.
However, these images suggest to many that all people-with-Parkinson’s must look and act like this.
An emerging picture of Parkinson’s today is (hopefully, below right panel) a person embracing an appropriate lifestyle with a treatment plan to manage and live with their symptoms.
My daily mantra: “Never give up; I refuse to surrender to Parkinson’s.” Frank C. Church

health

Chapter 4: Conclusions:
I am most pleased to welcome all of the new medical students (MS-1’s) to medical school and to everyone else, we’re glad you’re here.
The “USAF core values” could be of some use in your professional career and in your personal life.
Remember the “words that begin with the letter H”; they could be both supportive and comforting in your years of training.
We have one final “H word” to get through but I need YOUR voices…

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“I believe that curiosity, wonder and passion are defining qualities of imaginative minds and great teachers; that restlessness and discontent are vital things; and that intense experience and suffering instruct us in ways that less intense emotions can never do.” Kay Redfield Jamison

Cover photo credit: Frank Church

Home Is Where The Heart Is: (1) and (2) partly adapted from Anila Syed, Wordophile.

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Believe in Life in the Presence of Parkinson’s

“Life is not only merriment, it is desire and determination.” Kahlil Gibran

“Nothing will work unless you do.” Maya Angelou

Dedication: I recently participated in a Parkinson Wellness Recovery (PWR!) Instructor Workshop in Greenville, SC (July 30-31, 2016); now I am certified in PWR!Moves.  This post is dedicated to the workshop instructor Jennifer Bazan-Wigle; and to my classmates, all of the personal trainers interested in working with Parkinson’s disease patients.  Jennifer was simply a great instructor, with a real understanding of Parkinson’s and a true ability to ‘teach’.  The personal trainers who participated were very dedicated in their effort to master PWR!Moves and their willingness to instruct me during the weekend workshop made for a memorable experience.  And not to forget Steve Miller, a PWR!Moves instructor, who also helped teach; you were the inspiration that led me to apply for this workshop. To everyone certified in PWR!Moves and to those involved in my PWR!Moves workshop, thank you, thank you so very much.

PWR! Logo

“There are no shortcuts to any place worth going.” Beverly Sills

Introduction: Coach Lou Holtz said “Ability is what you’re capable of doing. Motivation determines what you do. Attitude determines how well you do it.”  This got me thinking about ability, motivation and attitude but especially how vital both motivation and attitude are for living successfully with Parkinson’s.

Believe in Life in the Presence of Parkinson’s:
I’m a healthy person that happens to have Parkinson’s; this is what I believe:
I believe daily exercise enhances my life in the presence of Parkinson’s.
I believe people-with-Parkinson’s can become healthier with exercise.
I believe sustained exercise can promote neuroplasticity to re-wire my neural network.
I believe I have the ability to do the repetitions to re-train my brain.
I believe staying positive will help control the course of my Parkinson’s.
I believe having courage will provide mettle in the battle against my disorder.
I believe being persistent allows me to restrain my Parkinson’s.
I believe motivation begins from within, and there can be no backing down to this disease.
I believe if I don’t give up I can slow the progression of my disorder.
I believe if you pity me it feeds the hunger of my Parkinson’s.
I believe if you join my team, you can help me stall this slowly evolving disorder.
I believe attitude is the fuel to sustain the effort to combat Parkinson’s.
I believe in science that new therapies/strategies against Parkinson’s are on the horizon.
I believe exercise with ability, motivation and attitude will work to my advantage each day.
I believe that each new day renews my chance of slowing the beast named Parkinson’s.
My daily mantra is to never give up; I refuse to surrender to Parkinson’s.

“Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” Mahatma Gandhi

Cover photo credit: https://c7.staticflickr.com/9/8615/16157237102_f15e505c19_b.jpg

 

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The 23andMe Parkinson’s Research Study

“Somewhere, something incredible is waiting to be known.” Carl Sagan

“A dream doesn’t become reality through magic; it takes sweat, determination and hard work.” Colin Powell

Introduction/Background: Parkinson’s disease is a neurodegenerative disorder that affects movement. It evolves slowly, usually starting as either stiffness in a hand or a small tremor. Over time, Parkinson’s progresses; typically characterized by motor symptoms such as slowness of movement (bradykinesia) with rigidity, resting tremor (Parkinsonian tremor), balance and walking problems, and difficulty swallowing and talking. Parkinson’s has several non-motor symptoms including anxiety, depression, insomnia  and psychosis (just to mention a few). ~60,000 new cases of Parkinson’s disease are diagnosed each year in the United States, adding to the greater than one million people who currently have Parkinson’s.  It has been estimated that 7-10 million people worldwide are living with Parkinson’s.

“Enclose your heart in times of need with the steel of your determination and your strength. In doing this, all things will be bearable.” Lora Leigh

Genetic Testing and Introduction/Background to 23andMe:
What is the “Central Dogma of Life”? (click here) The process of how the information and instructions found in DNA to become a functional protein is termed the ‘Central Dogma’.  The concept of the central dogma was first proposed in 1958 by Francis Crick, one of the discoverers of the structure of DNA. The central dogma states that the pattern of information that occurs most frequently in our cells is as follows: (i) use existing DNA to make new DNA  (replication); (ii) next, from DNA to make new RNA (transcription); and (iii) finally, using RNA to synthesize new protein (translation). The drawing below depicts the central dogma (the drawing is from this video, click here).


23andMe: What does the name 23andMe represent? Our genetic material  (genes) are housed in chromosomes and they are composed of DNA. We have 23 pairs of chromosomes in each cell capable of producing new proteins; thus, the name of the company makes sense.  23andMe provides DNA testing services.  The information derived from studying your DNA and genetic make-up can provide information about your ancestry, your genetic predisposition to many different diseases, drug responses and inherited conditions.

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“When burned on a CD, the human genome is smaller than Microsoft Office.” Steve Jurvetson

There’s an old saying that goes “Mother is always right.”:  My mother said for her entire life that we were English, Scottish (or Irish), French and German in our ancestral ‘gene pool’.  Several years ago, my extended family and I took to spitting into the 23andMe test-tubes.  We mailed them back to the company to establish our genetic history and screen our family gene pool for several diseases and their inherited susceptibility. Guess what?  Mom was absolutely right about our family ancestry.  Interestingly, there was no evidence of early onset Parkinson’s in my extended family; thus, my disorder is the sporadic/idiopathic type of Parkinson’s.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.” Agatha Christie

The 23andMe Parkinson’s research study: A few years ago, 23andMe decided to better understand the genetics of Parkinson’s disease; thus, the Parkinson’s research initiative.  Their goal is as follows: to understand the genetic associations found between Parkinson’s patients’ DNA and our disease; to take this new knowledge and search for a cure; and ultimately, they strive to enhance and speed-up how Parkinson’s disease is studied to better understand the genetics of the disease (click here to read further details) It’s easy to get involved in the 23andMe Parkinson’s research study, here are the eligibility requirements: (1) You have been diagnosed with Parkinson’s disease by a qualified physician; (2) You are willing to submit a saliva sample for DNA testing and complete online surveys related to your condition; (3) You have access to the internet; and (4) You are at least 18 years old.  The flow-chart below shows all one has to do to join this community of people-with-Parkinson’s helping out to search for a cure.
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23andMe has an impressive group of  primary research partners and several other organizations as supporting partners, see below. To date, more than 10,000 people have agreed to be in 23andMe’s Parkinson’s Research Community, which makes it the world’s largest collective of genotyped Parkinson’s patients. Furthermore, many thousands of people without Parkinson’s have also consented to participate in these research studies.

16.07.21.2 “Research is to see what everybody else has seen, and to think what nobody else has thought.” Albert Szent-Gyorgyi

It’s a personal decision and choice, but it’s also advancing our knowledge of Parkinson’s:  If you have concerns, look over the 3 websites cited below.  The question is should you volunteer your DNA for the study?  Should you consent to have your DNA further sequenced?  And the nice thing about being involved is you don’t have to leave your home to participate; it’s an in-house study in that they mail you the tube/device, you spit into it, and mail it back to 23andMe.  Simple. Valuable. Straightforward. Elegant.  Contributing. Joining the Parkinson’s team.

7 Things You Should Know About The Future Of Your Genetic Data (click here)
23andMe DNA Test Review: It’s Right For Me But Is It Right for You? (click here)
DNATestingChoice.com (click here for a review of 23andMe)

Ponder it, think about it some more, possibly fill out the questionnaire, upload the information, you are now part of the Parkinson’s 23andMe team. Why should you participate? You will be providing your own small piece to the Parkinson’s genetic puzzle; help complete the assembly of the landscape to this amazing puzzle.

You will matter whether you participate or not; you will always matter.  However, congratulate yourself if you decide to join the team; the 23andMe Parkinson’s research study.  You can be part of the unraveling and the delineation of the genetic anomalies that cause Parkinson’s.

“It is ironic that in the same year we celebrate the 50th anniversary of the discovery of DNA, some would have us ban certain forms of DNA medical research. Restricting medical research has very real human consequences, measured in loss of life and tremendous suffering for patients and their families.” Michael J. Fox

Cover photo credit: http://www.hdwallpapersact.com/wp-content/uploads/2013/04/ summer-sunset-on-beach-hd.jpg

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