Category Archives: Happiness

Part 1 of 2017 PWR! (Parkinson Wellness Recovery) Retreat: Pictures With Great Memories

“Just put one foot in front of the other.”  Austin Peck

“Coming together is a beginning; keeping together is progress; working together is success.”  Henry Ford

Introduction to Part 1: From May 28-June 3, >100 people came to Scottsdale, Arizona for the PWR! Retreat. The final tally had >50 people-with-Parkinson’s, more than 30 care partners and ~20 physical therapists/fitness professionals, and PWR! Gym staff.

Simply stated,  participating in my first PWR! Retreat was life-altering, life-changing and possibly even life-saving. It will be hard to put into words what the week meant to me and  what it did for me.

I have decided to write 2 posts describing the PWR! Retreat,  Part 1 contains: (i) overview of week; (ii) instructors; (iii) impressions of format, instructors, teams, and location; and (iv) video presentation describing the entire week.

“Alone we can do so little; together we can do so much.”  Helen Keller

Video presentation describing the entire week:   I want to begin with the finale and show a video compiled to highlight the week of the PWR! Retreat. The vast majority of pictures shown in the video were either taken by or obtained from Claire McLean. A few things I want to highlight about the PWR! Retreat that you will see in the video include the following: a) it was a tremendous amount of fun; b) it was a lot of work physically because we exercised several hours every day; c) there was total camaraderie and synergy throughout the week; d)  every afternoon was spent being educated about Parkinson’s; e)  the physical therapists/fitness professionals that led our sessions were all outstanding people and really knew how to work well with everyone with Parkinson’s, and f)  the week revolved around the exercise program and philosophy created by Dr. Becky Farley  (Founder and CEO of Parkinson Wellness Recovery), and in reality, she was the reason we were all at the PWR! Retreat.

Assembling the pictures and putting it all together into the video format left me somewhat speechless. The video brought back so many wonderful memories of the interactions with everybody and it reminded me of the intensity of the exercise.  Watching the video allowed me to recall the sheer quality and quantity of the education  program presented, and it let me reminiscence about the sincerity and friendliness of everyone present.   It just felt like everyone wanted to be at the PWR! Retreat every single second of that week.

Video of 2017 PWR! Retreat: Pictures With Great Memories (to access the YouTube site, please click here).

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” Walt Disney

PWR! Retreat agenda and overview of the week (Click here to view Program ): There were basically two-sessions per day.  The morning always began for everyone with a PWR-Walk with poles at 6:30 AM, then breakfast and then separate programs for those of us with Parkinson’s (exercise) and Care Partners (a mixture of education sessions, group discussions and/or exercise), and sometimes we were combined together (which was always fun). Lunch was next.  The afternoon session was usually all-inclusive of participants and we listened to experts discuss many aspects of Parkinson’s, we had group discussions, and we had sessions of yoga, meditation, Tai Chi and other modalities (e.g., deep-brain stimulation surgery or DBS) used to treat Parkinson’s. The day usually ended at 5:30 PM and dinner was on our own.  Many came back after dinner to the game room, we had a dance night, I played golf on 4 different evenings, many of us returned to the resort bar/club to socialize and many people checked in early because an 11-hour day was incredibly fun but also it was tiring. All-in-all, the agenda was completell, well-rounded, and most enjoyable.  We were never bored.

“I find that the best way to do things is to constantly move forward and to never doubt anything and keep moving forward, if you make a mistake say you made a mistake.”  John Frusciante

PWR! Retreat instructors (brief biographies of the people who led our instructions; presented in alphabetical order after Dr. Farley):  To me, exercise  was the most important aspect of the retreat, followed by meeting everyone with Parkinson’s, and then equally important, the educational program.   Therefore, I want to present the physical therapists/fitness professionals, volunteers and staff that provided us our workout each day.  Each person was uniquely qualified; in my opinion, together as a team they have no equal. Here are a few comments about each one of the instructors.

•Dr. Becky Farley has a PhD in neuroscience from the University of Arizona, a Masters of science physical therapy from the University of North Carolina at Chapel Hill, and a bachelor of physical therapy from the University of Oklahoma.  During her post-doctorate, she developed the LSVT Big therapy program. Following this, she created the exercise program of PWR!Moves, opened the PWR! Gym that follows a philosophy centered on exercise is medicine and framework call PWR!4Life; in all this is contained within the nonprofit organization called Parkinson Wellness Recovery (PWR!).  The PWR! Retreat begins and ends with Dr. Farley; she’s clearly the heartbeat of why we were in Arizona.

•Dr. Jennifer Bazan-Wigle has her doctorate of physical therapy from Nova Southeastern University. She is an expert in treating individuals with Parkinson’s and various movement disorders and works at the PWR!Gym in Tucson, Arizona.  My history with Jennifer starts in 2016 when she was my instructor for PWR!Moves certification;  she was a motivated teacher, very knowledgeable about Parkinson’s and had intensity and the drive to really focus us to learn the material.  Jennifer is a role model for a physical therapist, and she is an amazing educator for working with those of us with Parkinson’s.

Jan Beyer completed her Masters in health education from Cortland state New York and started her own personal training business called “FitJan”.   She now lives and works in the Vancouver, Washington area where she’s working for the Quarry Senior living as the fitness director/Parkinson’s director.

Dr. Emily Borchers has her doctorate in physical therapy from Ohio State University and she currently works at the PWR!Gym.  Emily was very effective at sharing her expertise in helping teach all of the individuals with Parkinson’s.

Heleen Burghout has a Masters degree in physiotherapy from University of Amsterdam,  the Netherlands; and she has a primary care practice called ‘FhysioAlign’ in Ede,  the Netherlands. One of the main focuses of her practice is dealing with exercise and improving physical and mental conditions of people with Parkinson’s.

Dr. Valerie A. Carter has a doctorate in physical therapy from Northern Arizona University in Flagstaff Arizona and is an associate clinical professor of physical therapy at Northern Arizona University.  She is certified and has taught workshops in both PWR! Moves and LSVT Big.  She owns and operates “Carter rehabilitation and wellness center and outpatient physical therapy clinic” in Flagstaff and she is an expert dealing with Parkinson’s patients.

Dr. Carl DeLuca has a doctorate in physical therapy from the University of Wisconsin-Madison.  He works in Wisconsin Rapids Wisconsin and is focused on a patient population with outpatient orthopedic and neurological including people with Parkinson’s.  He is working to set up a central Wisconsin PT program for Parkinson’s.

Dr. Chelsea Duncan has a doctorate in physical therapy from University Southern California and works as an outpatient neurologic clinic that specializes in movement disorders. She focuses in teaching both one-on-one and group exercise classes  for people with Parkinson’s. And she does live in sunny Los Angeles California.

Marge Kinder has a degree in physical therapy from University of California, San Francisco and for more than 40 years has been practicing and treating neurological disorders.  She is the project coordinator for the Redmond Regional Medical Center in Rome Georgia.

Dr. Claire McLean  has a doctorate in physical therapy  from the University of Southern California and is an adjunct faculty member at both University of Southern California and California State University, Long Beach.  She has extensive training and is a board-certified neurologic clinical specialist and teaches both PWR! therapist and instructor courses. She has started a community wellness program for people with Parkinson’s and this is located in Southern California. My experience with Claire is that she was the voice and instructor for the videos that I use in my own training and for my undergraduate class in highlighting PWR! Moves.  Claire is an incredible PT/educator of exercise-and-life-programs for those of us with Parkinson’s.

Nancy Nelson is an ACE certified personal trainer and fitness specialist with over three decades of work experience in the health and wellness industry. She is an expert in dealing with exercise and Parkinson’s.

Sarah Krumme Palmer  has an MS degree in exercise physiology and have been working with patients with Parkinson’s for over 20 years. She is the owner of ‘forever fitness’ in Cincinnati Ohio. She is certified in PWR! moves professional, and has the Rock Steady Boxing affiliate in Cincinnati and has a Certified Strength and Conditioning Specialist (CSCS) certification through the National Strength and Conditioning Association (NSCA).

Kimberly Peute has an MBA from Webster University and is currently a JD candidate University of Arizona School of Law. She was an active participant in the PWR! retreat and was in charge of the care partner program.

•Lisa Robert has a physical therapy degree from the University of Alberta and Edmonton Alberta Canada and has been working in various settings including acute care, private practice and outpatient setting treating neurological patients.   Lisa has NDT, LSVT Big and PWR! Moves professional training experience, and she is a Master Trainer for urban poling. Lisa is also an excellent golfer; I had the opportunity and pleasure to play golf with her twice during the week of the PWR! Retreat.

•Ben Rossi has nearly 20 years of experience in fitness coaching, eight years dealing with the peak Parkinson’s community and as the founder of InMotion, he owns and operates ATP evolution performance training center.  Ben’s goal is straightforward in that he wants you in motion, helps you achieve a better eating program, encourages a positive attitude and he wants you to become 1% better every day.  He lives in Warrensville Heights Ohio.

Melinda Theobald has her MS degree in human movement from the A.T. Still University, Arizona School of Health Sciences, where she is certified by the National Academy sports medicine as corrective exercise specialist and a performance enhancement  specialist.  She currently works for Banner Neuro Wellness West in Sun City Arizona.

•Christy Tolman  has been a licensed realtor for over a decade and  served on the Parkinson’s network of Arizona at the Mohammad Ali Parkinson Center in Phoenix.  She was everything to the PWR! Retreat in terms of organizational skills;  in other words,  the PWR! Retreat was successful because of Christy’s effort.

“If everyone is moving forward together, then success takes care of itself.”  Henry Ford

Impressions of format, instructors, teams, and location: 
Location– Scottsdale Resort in McCormick Ranch in Scottsdale Arizona was the ideal setting for the PWR! Retreat. The resort itself was well-kept and the rooms we used for the retreat were just right; the staff were helpful; it was adjacent to a golf course (great for me); many restaurants/shopping were only minutes away; and the food was just never-ending and really good quality.   I realize you can’t control the weather, but it was ideal sunny, hot and dry with clear skies.
Format–  the format was described above and it seemed ideal for the participants dealing with exercise in the morning and education in the afternoon with evenings free either to do things with your partner or with the group-at-large.
Instructors– They totally rocked!  I cannot imagine a better group of people to teach PWR! Moves and the other exercise (PWR-pole-walking, Circuit and Nexus) routines associated with the PWR! Retreat.  It was also so nice to see them outside of exercise; some gave talks in the afternoon sessions, we had meals together with them , and they were also active participants in all of our other events. 
Teams–   we had four different teams, my team was the Blue team  (For pole walking it was both the people with Parkinson’s and the care partners together, and for the exercise it was typically just the people with Parkinson’s together) and my group did the following sessions together as illustrated by the blue boxes in the table below.   I will describe the experience in more detail in my next post.  However, this was the vital experience that made the PWR! Retreat so valuable, spending time with these people the majority of whom had Parkinson’s (it was a special treat and honor to have the care partners with us for so much time as well because they were remarkable people themselves).

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“Don’t dwell on what went wrong. / Instead, focus on what to do next. / Spend your energies on moving forward / toward finding the answer.” Denis Waitley

Pictures With Great Memories:  Below are posted many of the pictures that were contained in the video I showed in the beginning of the post. My second post I will spend more time talking about the exercise routines, education program, team camaraderie, and my personal feelings behind the week of exercise and everything else associated with the PWR! Retreat.   It’s very safe to say as I remarked at the beginning, the impact of  the PWR! Retreat on me was life altering and very meaningful in a profound manner.

My Team/Program Leaders (names of those missing from pictures are given in the video):

 The Team Leaders and Teams:

Exercise Routines (Pole walking, PWR! Moves, Nexus and Circuit):

 

Dance night, game night and meditation:

 

My Keynote presentation and additional ‘stuff’:

 

 

Additional photos of the PWR! Retreat instructors/organizers:
Screen Shot 2017-07-14 at 9.39.41 AMIMG_5228 (1)Golf fun:

 

Giving thanks and saying good-bye to all of the instructors:

 

 

“I do believe my life has no limits! I want you to feel the same way about your life, no matter what your challenges may be. As we begin our journey together, please take a moment to think about any limitations you’ve placed on your life or that you’ve allowed others to place on it. Now think about what it would be like to be free of those limitations. What would your life be if anything were possible?” Nick Vujicic

Cover photo credit:

http://www.genehanson.com/images/photography/777sunset/020_arizona_sunetset_image0001.jpg

 

 

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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.

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“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]

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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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Evidence that Parkinson’s and Alzheimer’s are Not Transmitted by Blood Transfusion

“I owe my life to blood donors. I’m forever grateful to people who donate.” Niki Taylor

“We are linked by blood, and blood is memory without language.” Joyce Carol Oates

Synopsis: Could either Parkinson’s or Alzheimer’s be communicable diseases from human blood products? A recent study shows there is no evidence for these neurodegenerative disorders to be transmitted by blood transfusion.  This observation may contradict a growing hypothesis of a prion-like pathogenesis process for Parkinson’s.  The goal of this post is to present a brief overview of blood transfusion medicine and the study that suggests Parkinson’s and Alzheimer’s are not transmitted through blood transfusion.

“The easiest thing to be in the world is you. The most difficult thing to be is what other people want you to be. Don’t let them put you in that position.” Leo Buscaglia

Brief history of transfusion medicine (derived from a lecture in my undergraduate Biology/Pathology course): Galen of Pergamon was a Greek physician-philosopher who believed in the four humors of Hippocratic medicine, which were black bile, yellow bile, phlegm, and blood. Each of the four humors corresponded to one of the four traditional personality types/traits. Galen’s theories influenced Western medical science for many years, where blood-letting was even used medically to release a body of a bad humor (see the 2 images on the left side of the figure below).

Galen’s theory of blood circulation physiology lasted until 1628 when William Harvey showed that the heart acts as a pump to circulate the blood. By this time, everyone was aware of the life-giving qualities of blood. In the 1600’s, physician-scientists developed techniques to isolate dog veins, which led them to experiment with the transfusion from dog to dog. Jean-Baptiste Denys carried out the first transfusion of animal to human. The patient complained of “a very great heat along his arm”. Antoine Mauroy had received calves’ blood, he had pain in the transfused arm, vomiting, kidney dysfunction, and pressure in the chest. The next day he passed black urine; he had all of the “classic symptoms” of a hemolytic transfusion reaction. Sadly, Mauroy was re-transfused the next day and died, which resulted in Denys being charged with murder (see the 2 images on the middle of the figure below).   Jump ahead to the 1800’s, and Dr. James Blundell further describes human-to-human blood transfusion studies in a publication in the medical journal Lancet.

“And so I conclude that blood lives and is nourished of itself and in no way depends on any other part of the body as being prior to it or more excellent… So that from this we may perceive the causes not only of life in general… but also of longer or shorter life, of sleeping and waking, of skill, of strength and so forth.” William Harvey

In 1900, Karl Landsteiner performed a series of experiments with 22 colleagues in which the red blood cells of each individual were mixed with the serum of each of the others. From agglutination studies, he found three groups, which he named A, B and C. Landsteiner received the Nobel Prize in Physiology or Medicine in 1930 for discovering blood groups and the beginning of transfusion medicine (see the 2 images on the right side of the figure below).

“I have recently observed and stated that the serum of normal people is capable of clumping the red cells of other healthy individuals… As commonly expressed, it can be said that in these cases at least two different kinds of agglutinins exist, one kind in A, the other in B, both together in C. The cells are naturally insensitive to the agglutinins in their own serum.” Karl Landsteiner

transfusion-history-2

Blood facts and statistics in the USA (for the full set of lists, please click here): (a) every two seconds someone in the U.S. needs blood,  ~36,000 units of red blood cells are needed every day in the U.S., and  ~7,000 units of platelets and 10,000 units of plasma are needed daily in the U.S., respectively; (b) the yearly U.S. blood supply is through collection of 13.6 million units of whole blood and red blood cells from 6.8 million donors; (c) blood donation is a safe process that is a simple four-step process that consists of registration, medical history and mini-physical, donation and refreshments; (d) the average adult has about 10 pints of blood in their body with ~1 pint given during a donation; and (e) there are four types of transfusable products obtained from blood: red cells, platelets, plasma and cryoprecipitate, and a single donation can potentially help more than one patient.

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“Blood is a very special juice.” Johann Wolfgang von Goethe

Is there a risk of getting either Parkinson’s disease or Alzheimer’s disease from blood products?  Short-answer, no. This conclusion was reported by  Edgren, G., et al. (2016). “Transmission of neurodegenerative disorders through blood transfusion: A cohort study.” Annals of Internal Medicine 165(5): 316-324 (click here to view paper).  This is a retrospective cohort study, which means a scientific study of a group of people (cohort) that share a common exposure factor (here it a blood transfusion) to determine its influence on getting a disease (here it would be a neurodegenerative disease such as Parkinson’s  or Alzheimer’s), and then comparing this group of people to individuals not exposed to this situation/factor.

The study was based on >40 000 patients from a Swedish-Danish transfusion database who had received blood between 1968 and 2012 from donors who were later diagnosed with Parkinson’s, Alzheimer’s or dementia.  The comparison was then done with more than 1.4 million patients who never received blood from donors who subsequently received a diagnosis of a neurodegenerative disorder (Parkinson’s, Alzheimer’s or dementia). They found 2.9% of this group of patients had received a blood product from a donor later diagnosed with a neurodegenerative disorder.  This group of  patients who received blood from donors who were later diagnosed with a neurodegenerative disorder were followed for many years (up to 44 years), and they were matched for sex, age, and time since first transfusion (among some of the features compared/studied).

A big strength of this study was a rigorous statistical analysis of these patients that revealed there was no evidence of transmission of any of these neurodegenerative diseases. If you like statistics keep reading because they calculated a hazard ratio of 1.04 (95% CI, 0.99 to 1.09) for dementia in recipients of blood from donors with dementia versus recipients of blood from healthy donors, and they found for Parkinson’s a hazard ratio of 0.94 (95% CI, 0.78-1.14) and for Alzheimer’s a hazard ratio of 0.99 (95% CI, 0.85-1.15), neither of which were significant. The conclusion from these results suggest that there is no evidence that either Parkinson’s or Alzheimer’s is being transmitted through blood transfusion.

“The blood is the life!” Bram Stoker

Neurodegenerative disorders and prions:  The above study somewhat complicates the growing notion that α-synuclein acts as a prion-like substance to contribute to the development of Parkinson’s.  What are prions? Prions are proteins that take-on alternate shapes to cause disease. Prions were discovered while studying the cause of rare neurodegenerative diseases of animals and humans called scrapie and Creutzfeldt–Jakob disease, respectively.  Importantly, variant Creutzfeldt-Jakob disease (vCJD) may be transmissible by blood (click here to learn more) and blood products (click here); however, as found in the United Kingdom, most cases of vCJD have occurred due to increased potential exposure to contaminated beef in the diet.  Like α-synuclein in Parkinson’s, the prion-like substance in Alzheimer’s is a misfolded fragment of amyloid beta (Aβ) protein. Aβ fragments are prion-like in their manner of neuronal cell transmission.  A future post will describe in further detail the prion hypothesis for Parkinson’s disease (aggregates of α-synuclein) and Alzheimer’s  disease (aggregates of Aβ protein fragments).  The prion hypothesis of Parkinson’s and Alzheimer’s suggests these aggregated proteins are directly toxic to healthy neurons as documented in other prion disorders.

“It will have blood, they say; blood will have blood.” William Shakespeare

Blood donation and Parkinson’s, a personal perspective: The paper from Edgren et al. says that it is safe to donate blood even if you have Parkinson’s.  Their results tell me it is okay to continue to donate my blood to the American Red Cross.  This is especially important since I had been donating blood during the window-of-time where I had Parkinson’s before the actual diagnosis.  Good news!

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 “Let ourselves be seen, deeply seen, vulnerably seen, to love with our whole hearts, even though there’s no guarantee… to practice gratitude and joy in those moments of terror… to say ‘I’m just so grateful because to feel this vulnerable means I’m alive’… to believe that we’re enough. Because when we work from a place, I believe, that says, ‘I’m enough’, then we stop screaming and start listening, we’re kinder and gentler to the people around us, and we’re kinder and gentler to ourselves.” Brené Brown

Cover photo credit:  https://c2.staticflickr.com/8/7156/6782892659_a4bec2c07d_b.jpg

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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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7 Healthy Habits For Your Brain

   “Your brain – every brain – is a work in progress. It is ‘plastic.’ From the day we’re born to the day we die, it continuously revises and remodels, improving or slowly declining, as a function of how we use it.” Michael Merzenich

“The root of all health is in the brain. The trunk of it is in emotion. The branches and leaves are the body. The flower of health blooms when all parts work together.” Kurdish Saying

7 Basic Brain Facts [click here for more facts]: (1) The typical brain is ~2% of your total weight but it uses 20% of your total energy and oxygen intake. (2) >100,000 chemicals reactions/sec occur in your brain. (3) The latest estimate is that our brains contain ~86 billion brain cells. (4) In contrast to the popular belief that we use ~10% of our brains; brain scans show we use most of our brain most of the time. (5) There are as many as 10,000 specific types of neurons in the brain.  (6) Cholesterol is an integral part of every brain cell. Twenty-five percent of the body’s cholesterol resides within the brain. (7) Your brain generates between 12-25 watts of electricity, which is enough to power a low wattage LED light.

7 Healthy Habits for Your Brain: With or without Parkinson’s disease, taking care of your brain is all-important to your overall well-being, life-attitude, and health. These are  straightforward suggestions of healthy habits for your brain; hopefully, this list will serve as a reminder about their importance.  Here is a 1-page summary of the “7 Healthy Habits for Your Brain” (Click here to download file).

7-healthy-habits-for-your-brain


[1] Exercise and neuroplasticity:
  Exercise is almost like a soothing salve for your brain.  Some benefits of exercise include helping your memory and increased flow of oxygen to brain, which energizes the brain.  Exercise is good for both your heart and your brain. Exercise can reduce inflammation in the brain and increase hormones circulating to your brain.  For a brief overview on the benefits of exercise to your brain, click here.

Neuroplasticity is the ability to re-draw, re-wire the connections in your brain. What this means is that neuroplasticity is a concerted attempt of neurons to compensate for brain injury/disease. Neuroplasticity ultimately modifies your brain’s activities in response to changes in these neuronal-environments.

There is much positive evidence in animal models of Parkinson’s regarding exercise-induced neuroplasticity.  The same benefits are now being tested in humans with Parkinson’s and the results are most encouraging. One of the numerous backlogged blog drafts that will be completed in the near-future is a “Review of Exercise and Neuroplasticity in Parkinson’s”.

“Exercise is really for the brain, not the body. It affects mood, vitality, alertness, and feelings of well-being.” John Ratey

“Neuroplasticity research showed that the brain changes its very structure with each different activity it performs, perfecting its circuits so it is better suited to the task at hand.” Naveen Jain

[2] Diet and brain food: Your memory is aided by ‘what’ you eat.  Harvard’s Women Health Watch makes the following suggestion to boost your memory through diet (click here to read entire article): “The Mediterranean diet includes several components that might promote brain health: Fruits, vegetables, whole grains, fish, and olive oil help improve the health of blood vessels, reducing the risk for a memory-damaging stroke; Fish are high in omega-3 fatty acids, which have been linked to lower levels of beta-amyloid proteins in the blood and better vascular health; Moderate alcohol consumption raises levels of healthy high-density lipoprotein (HDL) cholesterol. Alcohol also lowers our cells’ resistance to insulin, allowing it to lower blood sugar more effectively. Insulin resistance has been linked to dementia.”  WebMD summarized the role of diet and brain health in “Eat Smart for a Healthier Brain” (click here to read article).

A large group of women (>13,000 participants) over the age of 70 were studied and the results showed that the women who ate the most vegetables had the greater mental agility (click here to read the article). These results suggest for a healthy brain we should eat colorful fruits and vegetables high in antioxidants; and foods rich in natural vitamin E, vitamin C, B (B6, B12) folic acid and omega-3 fatty acids. Furthermore, we should avoid refined carbohydrates and saturated fats. In small amounts, vitamin D3 is almost like candy for your brain.

“Hunger, prolonged, is temporary madness! The brain is at work without its required food, and the most fantastic notions fill the mind.” Jules Verne

“Everything one reads is nourishment of some sort – good food or junk food – and one assumes it all goes in and has its way with your brain cells.” Lorrie Moore

[3] Mindfulness/meditation: Greater Good (The Science of a Meaningful Life) describes mindfulness as “…maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment. Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a ‘right’ or ‘wrong’ way to think or feel in a given moment.”  I recently described mindfulness as “Mindfulness means you stay within your breath, and focus within yourself, with no remembrance of the past minute and no planning for the future moment.”  Here’s a simple mindfulness experience/moment: simply be aware of the steam leaving your morning cup of coffee/tea, clear your immediate thoughts, then sip, focus and savor this moment.

“The picture we have is that mindfulness practice increases one’s ability to recruit higher order, pre-frontal cortex regions in order to down-regulate lower-order brain activity,” a comment from Dr. Adrienne Taren, a researcher studying mindfulness at the University of Pittsburgh. She also said  “it’s the disconnection of our mind from its ‘stress center’ that seems to give rise to a range of physical as well as mental health benefits.”  (Click here to read this article).  “What Does Mindfulness Meditation Do to Your Brain?” (click here to read more)

“Mindfulness practices enhance the connection between our body, our mind and everything else that is around us.” Nhat Hanh

“Mindfulness is a pause — the space between stimulus and response: that’s where choice lies.” Tara Brach

 [4] Stress reduction: When you are under constant or chronic stress your body makes more of the steroid hormone cortisol (a glucocorticoid), which is produced by the adrenal glands above your kidneys.  Over time, chronic stress can trigger changes in brain structure and function. Excess cortisol production reduces neuronal cells, over-produces myelin protective covering to our nerves, and we make more oligodendrocytes.  How do you reduce chronic stress?  Exercise and mindfulness/meditation are both able to lower cortisol levels.  Easier said then done to making life-style changes to reduce chronic stress; however, doing it will allow the neuroplastic process to begin re-wiring your brain. For an overview of stress and trying to manage/reduce chronic stress, click here.

“Stress is an ignorant state. It believes that everything is an emergency.” Natalie Goldberg

“There is more to life than increasing its speed.” Mahatma Gandhi

[5] Work, keep active mentally:  There are 2 sides to this topic.  First, stay engaged at work and you won’t age as fast as someone disengaged.  What I’m trying to say is simply staying active mentally at work will assist your brain during the ageing process.  Keep your brain stimulated with work, thought, challenges; the effort provides your brain with significant growth.  Your reward will be an active-focused and rejuvenated mind.  Second, by contrast, we’re all working long hours balancing too many tasks, all-the-time; ultimately, we’re trying to multi-task when we really can’t multi-task very well.  In a nice article entitled “The Magic of Doing One Thing at a Time“, Tony Schwartz summarized a key problem: “It’s not just the number of hours we’re working, but also the fact that we spend too many continuous hours juggling too many things at the same time. What we’ve lost, above all, are stopping points, finish lines and boundaries.”  As you balance the 2-sides-of-the-topic, focus your energy on the first-side by performing each individual task/topic; clear your mind, keep your brain engaged, focus hard and then let your brain renew.

“To let the brain work without sufficient material is like racing an engine. It racks itself to pieces.” Arthur Conan Doyle

“A fresh mind keeps the body fresh. Take in the ideas of the day, drain off those of yesterday.” Edward Bulwer-Lytton

 [6] Positive and happy is better for your brain:  I truly believe you need to be positive in dealing with Parkinson’s; trying to focus on staying happy will benefit all-around you and bolster your brain’s health. Using positivity will allow you to creatively handle many obstacles ahead, whether in the absence or presence of Parkinson’s.  Susan Reynolds summarized in “Happy Brain, Happy Life” that being happy: “stimulates the growth of nerve connections; improves cognition by increasing mental productivity; improves your ability to analyze and think; affects your view of surroundings; increases attentiveness; and leads to more happy thoughts.”  On the notion of staying positive, she said: “…thinking positive, happy, hopeful, optimistic, joyful thoughts decreases cortisol and produces serotonin, which creates a sense of well-being. This helps your brain function at peak capacity.”


Positive

“Do the best you can until you know better. Then when you know better, do better.” Maya Angelou

“You have to train your brain to be positive just like you work out your body.” Shawn Achor

[7] Sleep: It’s simple; our brains, our bodies need sleep.  Many of us battle with less than adequate daily sleep habits.  However, it’s really simple; our brains, our bodies need sleep.  Much of our day’s success resides in the quality of sleep the night before.  The science of sleep is complex but much of it revolves around our brain.  We use sleep to renew and de-fragment our brain; and sleep helps strengthen our memory.  For more details on sleep science, please look over “What Happens in the Brain During Sleep?” (click here).  Alice G. Walton very nicely summarized several aspects of the sleep-brain interactions focusing on the following 7 headings: “Sleep helps solidify memory; Toxins, including those associated with Alzheimer’s disease, are cleared during sleep; Sleep is necessary for cognition; Creativity needs sleep; Sleep loss and depression are  intertwined; Physical health and longevity; and Kids need their sleep” [click here for “7 Ways Sleep Affects The Brain (And What Happens If It Doesn’t Get Enough)”].  Finally, the Rand Corp. just released a comprehensive study on sleep and the economic burden being caused by the lack of sleep (click here to read the 100-page report).

Sleep is the golden chain that ties health and our bodies together.Thomas Dekker

A good laugh and a long sleep are the best cures in the doctor’s book.   Irish Proverb

A Personal Reflection on the “7 Healthy Habits for Your Brain”:  My fall semester is physically, mentally, and emotionally draining; and I cherish doing all of these tasks, I really do.  The writing of this blog is a deliberate attempt to remind me what I need to be doing, to re-initiate tomorrow in my daily life.  I could explain each point in detail in what poor-brain-health-habits I’ve developed this semester (but I won’t).  However, I am printing out the 1-page handout of 7-healthy-brain-habits to keep it with me as I spend the rest of December re-establishing effective habits for my brain; and doing a better job of balancing work with life-love-fun.

“Your body, which is bonding millions of molecules every second, depends on transformation. Breathing and digestion harness transformation. Food and air aren’t just shuffled about but, rather, undergo the exact chemical bonding needed to keep you alive. The sugar extracted from an orange travels to the brain and fuels a thought. The emergent property in this case is the newness of the thought; no molecules in the history of the universe ever combined to produce that exact thought.” Deepak Chopra

Cover image: https://img1.etsystatic.com/000/0/6392236/il_fullxfull.267319437.jpg

Mindfulness list: http://www.mindful.org/7-things-mindful-people-do-differently-and-how-to-get-started/

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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).

slide01

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:

slide02

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).

slide14

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…

slide29

“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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9 Life Lessons from 2016 Commencement Speeches

“There is no script. Live your life. Soak it all in.” Dick Costolo, University of Michigan in 2013

“I encourage you to live with life. Be courageous, adventurous. Give us a tomorrow, more than we deserve.” Maya Angelou, University of California Riverside in 1977

Introduction: Each spring  semester, University systems have  graduation ceremonies along with commencement speakers to give advice about life ahead for our graduating students. We can all use such life lessons as a guidepost for what to do or what to expect with our lives. For some of you, these ‘pearls of wisdom’ may serve as as a reminder to what you’ve already (possibly/probably) experienced. There are three parts to this post: Part 1 gives some notable advice from various 2016 Commencement speeches; Part 2 is using this advice living in the presence of Parkinson’s; and Part 3 is a reflection on two graduation ceremonies I attended.

Part 1: 9 Life Lessons from 2016 Commencement Speeches Presented as a Chart (please click here to view/download a full-size version: 16.06.01.Graduation Life Lessons).
16.06.01.Graduation Life Lessons

Part 2: Using the 9 Life Lessons Living with Parkinson’s.

  1. Resilience and Persistence. “When the challenges come, I hope you remember that anchored deep within you is the ability to learn and grow. You are not born with a fixed amount of resilience. Like a muscle, you can build it up, draw on it when you need it. In that process you will figure out who you really are — and you just might become the very best version of yourself.Sheryl Sandberg (COO Facebook), University of California at Berkeley
    A thriving daily life with Parkinson’s requires both resilience and persistence to resist its constant negative forces. Life (at times) can be a challenge, but challenges can be met with steadfastness/determination from a resilient and persistent attitude.

  2. Mindfulness. “In those moments when you’re doing something that could be life-changing, whether it’s in space, or in your career, you need to constantly remind yourselves that there is nothing more important than what you’re doing right now.Scott Kelly  (retired NASA astronaut), University of Houston
    Losing sleep over what happened with your disorder yesterday is no doubt difficult; but it’s better to dwell in the present moment and neither fret over yesterday nor dread about what may come tomorrow. You control the current moment, please practice mindfulness.
  3. Embrace The Unexpected. Don’t be so focused in your plans that you are unwilling to consider the unexpected.Senator Elizabeth Warren, Bridgewater State University
    Consider your disorder, you must be able to embrace this unexpected turn in your life and manage the best you can. Personalize your disorder and understand its nuances on you; then you will be able to successfully navigate life in its daily presence.

  4. Care Is Investing In Others. Care is as important as career. … Career is investing in yourself. Learning, growing, and building on the education you received here. Care is investing in others. It is learning like a gardener, or a teacher, or a coach, what to do and what not to do to enable others to grow and flourish.” Anne Marie Slaughter (President and CEO of New America), University of North Carolina at Chapel Hill
    Yes, a career is important; however, caring and investing in others will be equally valuable over the course of your life. The caring for others allows you to approach life with open arms and not be afraid to ask for help when the time is needed.
  5. Mistakes Will Happen. “Every stumble is not a fall, and every fall does not mean failure. Know the next right move when the mistake happens. Because being human means you will make mistakes. And you will make mistakes, because failure is God’s way of moving you in another direction.” Oprah Winfrey (American media proprietor and philanthropist), Johnson C. State University
    Clearly, we’ve all made mistakes and likely even failed at something before. Within the framework of having Parkinson’s, just keep trying to do the things you were doing before the diagnosis. You may falter more frequently now with the disorder but it really is the effort that counts.

  6. Kindness. “We like to feel we are civilized. How do you measure that? The usual versions look at science, technology, wealth, education, happiness. Every measure fails, except one. There is one measure of civilization and it comes down to how people treat each other. Kindness is the basic ingredient.” William Foege (American epidemiologist who devised the global strategy that led to the eradication of smallpox), Emory University
    This reminds me of the Golden rule, which says, “Do unto others as you would have them do unto you.”  The cornerstone of kindness is simple but true; be kind and honorable to others, the rest will take care of itself.

  7. Turn No Into Yes. When life tells you no, find a way to keep things in perspective. That doesn’t make the painful moments any less painful… You don’t have to live forever in that no. Because if you know what you’re capable of, if you’re always prepared, and you keep things in perspective, then life has a way of turning a no into yes.” Russell Wilson  (NFL starting quarterback), University of Wisconsin
    Within you lies the same person you were before Parkinson’s; thus, you should remember what you are clearly capable of doing. Go ahead and see for yourself,  yes  is still occurring with the disorder and likely outweighs the no in terms of frequency.

  8. Life-long Learner. “The secret to success is not rocket science. It just requires true dedication and a willingness to go the extra mile…. Let’s put it this way: I know of no Nobel Prize winner who has stopped studying.” Michael Bloomberg (former Mayor of New York City), University of Michigan
    Your lessons of life continue to accumulate. Get to know your disorder and stay educated about it. The more up-to-date you become about Parkinson’s the better you will be prepared in terms of living years in the future.

  9. Live Every Day. “Live with the understanding of how precious every single day would be. How precious every day actually is” Sheryl Sandberg (COO Facebook), University of California at Berkeley
    Your life-contract begins when you wake up each morning, and it’s reassessed fully as you fall asleep each evening. Please stay hopeful, positive, courageous and cherish each day even with your disorder, appreciate each day as it occurs.

Part 3: Two UNC-CH Graduation Ceremonies, May 2016.  We have our graduation ceremonies on Mother’s Day weekend. Besides the graduates themselves, equally involved are immediate/extended families, loved ones and friends.  Receiving a degree of any distinction (e.g., BA/BS, MA/MS, MD, or PhD) is an achievement. Everyone deserves congratulations.  For me, participating in the School of Medicine ceremony [where I get to sit on the stage and wear my regalia  (please note the medical school pictures below are from last year because I forgot my cell phone this year) and watching the Department of Biology ceremony are very proud and joyful times seeing everyone graduate (and moving on to the next life-phase).

My Graduation Advice: On the last day of my undergraduate Biology class, I give advice to the graduating seniors (and it’s based on these four points):

  1. Dreams and hard work will make a difference, over time.
  2. Think about now and in the future, what makes you happy?
  3. Listen to others, seek their advice, keep listening, keep thinking.
  4. Family and real friends will always be there for you, always.

Graduation weekend signifies both an ending and a beginning. It is a completion of a cycle for many students graduating; and it states that soon we begin again with a brand-new set of students. Ultimately, to me graduation signifies a feeling of hope, determination, and renewal.  These graduation ceremonies bolster my resistance against my Parkinson’s.  I am already looking forward to next year’s events.

“There is nothing more beautiful than finding your course as you believe you bob aimlessly in the current. And wouldn’t you know that your path was there all along, waiting for you to knock, waiting for you to become. This path does not belong to your parents, your teachers, your leaders, or your lovers. Your path is your character defining itself more and more every day.” Jodie Foster, University of Pennsylvania in 2006

References:
http://www.bloomberg.com/news/videos/2016-05-27/the-best-commencement-speech-of-2016
http://www.people.com/article/commencement-addresses-2016
http://www.pbs.org/newshour/making-sense/column-the-5-best-pieces-of-advice-from-2016-commencement-speeches/
https://www.washingtonpost.com/news/on-leadership/wp/2016/05/27/the-best-commencement-speeches-you-may-have-missed/
http://www.thefiscaltimes.com/2016/05/20/Best-Advice-Commencement-Speeches-2016
http://www.inc.com/laura-garnett/the-most-inspirational-commencement-speeches-of-2016.html
https://www.entrepreneur.com/slideshow/275897#1
http://onpoint.wbur.org/2016/05/16/best-of-2016-commencement-speeches
https://www.themuse.com/advice/35-inspirational-graduation-quotes-everyone-should-hear

Cover photo credit: https://s3.amazonaws.com/media.dth/17887_0512_graduation2_zhango.jpg