Tag Archives: Health and Healing

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

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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

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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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The Evolving Portrait of Parkinson’s

“Aging is not lost youth but a new stage of opportunity and strength.” Betty Friedane

 “If we own the story then we can write the ending.” Brené Brown

Précis:  To showcase the amazing art/photography/videography of Anders M. Leines who lives in Norway, which gives me the opportunity to voice an opinion about the emerging picture/image of Parkinson’s today.

World Parkinson Congress (WPC) Promo Video: Please watch this video, it’s powerful; “This is Parkinson’s” a WPC Promo from Anders M. Leines (either view it below or click here).  Anders is a videographer and cameraman who works in Oslo, Norway; he’s been diagnosed with young onset Parkinson’s. One of his goals is to change the view about how Parkinson’s is perceived by the world.  One look at his video reinforces this notion.  A very nice article about Mr. Leines was recently posted in “Parkinson’s Life” (click here to read this story).  Anders also shares his story with his own blog “This is Parkinson`s” – The Exhibition.  The pictures, the script, and the music accompanying the WPC 2016 Promo by Mr. Leines says more in 1 min 42 sec about Parkinson’s than someone could likely summarize by writing a blog post, but nonetheless I’m going to try.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve

The Historical Perception of Parkinson’s: Sir Richard Gowers, in 1886, used this drawing (below left panel) to depict a person with Parkinson’s. When you perform a Google search for a ‘picture of Parkinson’s disease’, these sorts of images are still very prevalent. Yes, the average age of someone with Parkinson’s is 60 years of age and older. And yes, Sir Gowers does accurately show the Cardinal signs of Parkinson’s: tremor, rigidity from muscle stiffness, bradykinesia (slowness of movement), postural instability, and masking (reduced facial expression).  Furthermore, Dr. Charcot’s  drawings, from 1888, also depict a typical Parkinson’s patient compared to an atypical patient with Parkinson’s (bottom right panel).  While these drawings are accurate, these images portray to many who see them that all people-with-Parkinson’s must look and act like this. 

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“In all human affairs there are efforts, and there are results, and the strength of the effort is the measure of the result.” James Allen

The Emerging Perception of Parkinson’s: The reality today is that available treatment strategy and approach to life for someone with Parkinson’s are very different than what was possible for the people portrayed by Sir Gowers and Dr. Charcot. Today, we have well-trained neurologists that are specialists in movement disorders. We have a growing appreciation and understanding of the pathology and biology of Parkinson’s disease.  We have learned about vital lifestyle changes needed to thrive in the presence of this disorder. We have a growing list of therapies [both traditional and complementary and alternative medicine (CAM)] to treat Parkinson’s; we even have deep brain surgery (this surgical technique itself is undergoing new advances and is further evolving in its attempt to control/modify symptoms). We have an increased awareness of the importance of exercise to try to slow progression of this disorder. There is clearly a subset of people with Parkinson’s that present at an earlier age than 60 years old (and this is what Mr. Leines and his exhibition is highlighting).   No doubt, we are living longer and we are likely healthier than someone from the 1880’s; however, that also implies we’re living more years with our Parkinson’s.

This is not saying that Parkinson’s today is either a benign or a tame disease; in fact, it’s an insidious disorder.  Having Parkinson’s is like trying to get rid of cockroaches in your house.  You’ve done all you can to eliminate the roaches from your home, and you don’t see them for weeks; subsequently one day, they’re back. Likewise, Parkinson’s creeps around in the background of your daily life by stealthily altering physical/movement functions, by slowly uncoupling your crucial autonomic nervous system, and surreptitiously in ~50% of people with the disorder, they can develop psychotic tendencies.  The image of Parkinson’s today is clearly evolving due to improved treatment, better understanding of the disorder itself, and improved strategies for living with it; however, under any guise it is still a disagreeable disorder.

“With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose.” Wayne Dyer

A Change is Happening in Our Perspective of Parkinson’s Today:  It is my belief that the perception of Parkinson’s today has changed and is becoming much different than the historical views as described above. I truly believe that the effort most people are using to handle their disorder puts them in a healthier and better lifestyle to manage their symptoms. An emerging predominate picture of Parkinson’s today is a person striving to live strongly. They’ve embraced the appropriate lifestyle, and they are trying their hardest to not become as depicted by the images from the 1800’s. When you do a Google search for ‘images of Parkinson’s disease 2016’, you will likely find more positive and dynamic pictures of people similar to those portrayed by Mr. Leines.

“Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity.” Louis Pasteur

A Personal Perspective of Parkinson’s Today: With the “This is Parkinson’s” video from Anders M. Leines as an inspiration, I’ve included two sets of pictures of my life with Parkinson’s (photos are below). If my disorder fully progresses, and it is a progressive neurodegenerative disorder, in advanced age (I’m currently 62 years old) I may possibly appear like the drawings above from Sir Gowers and Dr. Charcot. However, as a research scientist, I truly believe in the words of Dr. Claude Levi-Strauss who said “The scientist is not a person who gives the right answers, he is one who asks the right questions.”  I am trying to improve my own knowledge about Parkinson’s; after all, there are still so many questions I want to ask, there are so many new scientific advances that I need to better understand, and there are some emerging treatment strategies that I’d be willing to consider in the future. In other words, Parkinson’s is a reluctant and unwelcome visitor in my body and I’m doing as much as I can to manage the disorder.

With substantial effort, I’m going to do all I can to resist progression; I’m going to stay hopeful, be positive, and remain persistent for many years to come. Importantly, I will take time to stretch every few hours and really make an effort to exercise every day. I will try harder to get an adequate amount of sleep every night.  I am also trying to be mindful and live within the moment by not fretting about what the future could bring.

Thus, this is what I consider to be true of myself (many other people with Parkinson’s would also fit this description): I’m a healthy person that just happens to have Parkinson’s. As I’ve said before, we both have much left to accomplish. We are both still here. Stay focused and stay hopeful.

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“We live in a time when the words impossible and unsolvable are no longer part of the scientific community’s vocabulary. Each day we move closer to trials that will not just minimize the symptoms of disease and injury but eliminate them.” Christopher Reeve

Cover photo credit: http://epod.usra.edu/.a/6a0105371bb32c970b015438c5312a970c-pi

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Catching Up, Life-Stories, and Future Posts in Journey With Parkinson’s

“One isn’t necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can’t be kind, true, merciful, generous, or honest.” Maya Angelou

“Life is not a problem to be solved, but an experience to be had.” Alan Watts

Don’t You Get The Summer Off?: My favorite check out guy at Whole Foods asked me recently, “Don’t you get the summer off from teaching medical students?” And one of my  weekend golf buddies routinely jokes about the fact that I’m in academics and says “I only have to work nine hours a week.”  In reality, being at a medical school has always meant to me to work essentially everyday. As long as my brain is functioning, I will continue to follow this lifestyle.  I have spent the summer getting ready for the fall semester, catching up on my research in the laboratory, and doing all the things I neglected to do during the school year.  Yes, in the summer I do take more opportunity to play golf during the week; however, I make up the hours working either early in the morning or late in the evening.   I realized today that I had not posted a blog in over a month; I have been busy and just not had time to sit at my computer to plan, research, think and write. The goal of this current blog is meant to be an update including future planned posts.

“What I have learned from life is to make the most of what you have got.” Stephen Hawking

Letters of Recommendation:  One of the obligations of a university professor that teaches undergraduate students is to be willing and able to write supportive letters of recommendation (well, that’s my opinion).  Many of the students I’ve taught in the past year are applying to medical school, dental school, graduate school, physician assistant school, pharmacy school, nursing school, and postbaccalaureate programs.   Several of my former students are also reapplying to some of the same programs. In a typical year, I will write 40 to 50 letters of recommendation.  And of course, the goal is to write a uniquely different letter for each student; to describe their key highlights, give evidence of their potential, and to find the most appropriate descriptive adjectives for each person.  Thus, each letter becomes its own journey from my perspective, and it takes time and considerable attention to compose such a supportive type of letter. And writing for me is always a struggle, because I have to be in the right mental  frame of mind to compose any document. My goal for the rest of  July through August is to try and write one or two letters of recommendations every couple of days.

“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained.” Marie Curie

Parkinson’s Empowerment Symposium: Options for Care and Living Well for Patients and Families (June 18, 2016, Asheville, North Carolina): The UNC Movement Disorders Center hosted a 1-day symposium on Parkinson’s. The focus was described as follows: “This educational program is intended for individuals diagnosed with Parkinson’s disease and/or PD care partners, with the goals of reviewing treatment and therapy options, discussing effective coping, and providing a space to ask questions.” Seeking refuge from the summer heat, we combined a fun weekend in the cool Smoky mountains in the wonderfully eclectic city of Asheville with great cajun food for dinner, cool dry mountain air to play 18-holes of golf and just relaxing fun; we also attended the Parkinson’s symposium (see pictures below; the tattoo shop story will be reserved for a future blog post).  Being around a large group of people with Parkinson’s was inspiring and motivated me further to work managing/dealing with my Parkinson’s.  All-in-all, a great experience.

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“Life is like riding a bicycle. To keep your balance, you must keep moving.” Albert Einstein

Awakenings:  Awakenings is a 1973 book by Oliver Sacks; he found beneficial effects of the drug L-Dopa when given to catatonic patients with encephalitis lethargica. Awakenings is also a 1990 American movie on the same topic staring Robin Williams and Robert De Niro. Use of L-Dopa ‘awakened’ the patients after years of being catatonic and now they are confronted with renewed life many years beyond their comprehension. The idea behind the treatment came from the success of using L-Dopa for treating Parkinson’s.

For the past few months, I’ve been feeling more stiffness, moving less-well and generally had a slight foreboding sense of dread.  My Neurologist, during my recent visit, decided that my treatment strategy had become less effective and we needed to ‘add-on’ something.  After several minutes of options and dosing of various compounds, I made the decision to move to Sinemet (the generic formula of Carbidopa-Levodopa 25-100 tablets); in addition to the dopamine agonists (Ropinirole extended release tablets and  Rotigotine transdermal patch).  My ‘awakening’ moment happened with the first small dose of the generic Sinemet. Absolutely felt better, less stiff, more flexible, and totally different.  I am excited to see what the future brings in continuing my new group of drugs; ready to keep exercising with renewed hope and ready to keep the rest of my life moving more efficiently.  So far the addition of the generic Sinemet has been simply positive and my own awakening.

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” Bernice Johnson Reagon

Coming Attractions: There are 4 categories to posts for this blog: i) “Life Lessons” (describe living with Parkinson’s); ii) “Medical Education” (report emerging medical strategies for treating/managing/curing Parkinson’s); iii) “Strategy for Living” (support mechanism to anyone with Parkinson’s or other neurodegenerative disorder); and iv) “Translating Science” (educate by presenting scientific aspects of Parkinson’s).  Listed below are the posts that are coming later this summer (my hope/plan is to get ~2 posts finished/week):

Medical Education
Immune System and Parkinson’s (Part 2): Role of Innate Immunity.

Anatomy of Parkinson’s.
Traumatic Brain Injury (TBI) Associated with Increased Risk of Parkinson’s but not of Alzheimer’s.
Update on the Anti-leukemia Drug Nilotinib and Treatment of Parkinson’s.

Strategy for Living
Parkinson’s Wellness Recovery (PWR!) Exercise Program and Neuroplasticity.
Part 5: Journey to Parkinson’s and Transradial Cardiac Catheterization.

Part 4: Journey to Parkinson’s and Electromyography.
Part 3: Journey to Parkinson’s and Polysomnography.
Part 2: Journey to Parkinson’s and Magnetic Resonance Imaging.

Life Lessons
New Face of Parkinson’s and the World Parkinson Congress.
A Simple Plan.
Where Were You When?
Love in the Presence of Parkinson’s.

Translating Science
c-Abl and α-Synuclein Interactions Linked to the Development of Parkinson’s.
Less Clueless About Parkinson’s.
Genetic Profiling of Parkinson’s Disease and Parkinson’s Dementia.
Arginase in Alzheimer’s: A New Hope.
Deletion of Huntingtin Gene in Adult Mice Suggests a New Treatment Strategy for Huntington’s.
NAD+  is Neuroprotective in a Drosophila Model of Parkinson’s.

“Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.”  Mother Teresa

Cover photo credit: http://www.pixelstalk.net/wp-content/uploads/2016/05/HD-Summer-Desktop-Wallpaper.jpg

Treatment of Parkinson’s Psychosis with Nuplazid

“At what point do you give up – decide enough is enough? There is only one answer really. Never.” Tabitha Suzuma

“Be proud of your scars. They remind you that you have the will to live.” Paulo Coelho

Précis: ~50% of the people with Parkinson’s develop psychotic tendencies. Treatment of their psychosis can be relatively difficult. However, a new drug named Nuplazid™ was just approved by the FDA specifically designed to treat Parkinson’s psychosis. A brief review follows.

Psychosis in Parkinson’s (Hallucinations and Delusions): Psychosis can occur in ~50% of Parkinson’s patients. The Parkinson’s psychosis typically results in hallucinations (where you see or hear things that are not there) and/or delusions (where you have false beliefs). As one could imagine, hallucinations and delusions would be severe/serious aspects of this disorder.  Parkinson’s psychosis requires treatment because these symptoms are life-altering; they lead to an imbalanced emotional status, and they would disrupt interactions with loved ones and others.

“Severe mental illness like psychosis can lead to a tragedy like this – that people can see things that aren’t real and hear things that aren’t real and believe things that aren’t real, and act in that distorted reality.” Andrea Yates

Antipsychotic Drugs (APD) Typically Target Dopamine Receptors: There are many antipsychotic (neuroleptic) drugs available. Historically, most of these drugs target neurotransmitters that regulate nerve cell communications. Blocking the neurotransmitter dopamine is thought important to managing symptoms of psychosis. Modern pharmacology has not only expanded the drugs available, but many years of research has expanded the ‘targets’ for antipsychotic drugs (ADP).

The usual targets for most APD’s include dopamine receptors, serotonin receptors and other monoamine receptors (see figure below).  Therefore, if you are being treated for both Parkinson’s disease and Parkinson’s psychosis you can immediately see the ‘problem’. You likely take some form/mimic of dopamine to manage the movement disorder; at the same time, you could be blocking dopamine receptors with an APD being used to manage the Parkinson’s psychosis. This would likely create an antagonistic medication/treatment-relationship in managing the disorder.

16.06.05.Nuplazid


“He wrote on a piece of paper with his pencil. Psychosis: out of touch with reality. Since then, I have been trying to find out what reality is, so that I can touch it.” Jeanette Winterson

“New-Kid-on-the-Block” (Nuplazid™) to Treat Parkinson’s Psychosis: The US FDA has approved Nuplazid (pimavanserin), the first APD of its kind to treat the hallucinations and delusions associated with Parkinson’s psychosis. Nuplazid is being marketed by Acadia Pharmaceuticals Inc. of San Diego, California (click here for more detailed information about Nuplazid). Nuplazid was given breakthrough therapy designation and priority review by the FDA (click here to read the FDA news release); the goal was to help relieve symptoms in Parkinson’s psychosis.

Unlike other APD’s that have broader target sites, as depicted in the figure above, Nuplazid is a selective inverse agonist that targets 5-HT2 serotonin receptors. What is an ‘inverse agonist’?  A slight diversion into pharmacology says that “an inverse agonist is an agent that binds to the same receptor as an agonist but induces a pharmacological response opposite to that agonist.” (click here to read more). For a visual depiction on how an inverse agonist works as a drug, see the drawing below.

Inverse_agonist_3.svg

Nuplazid Offers New Hope: Using Nuplazid to treat Parkinson’s psychosis should have no negative impact on motor symptoms that need treatment in Parkinson’s. Michael S. Okun, MD, Medical Director of The National Parkinson Foundation, said last month: “Today’s approval of Nuplazid represents a major paradigm shift in the treatment of Parkinson’s disease psychosis. Through its novel and selective mechanism of action, Nuplazid is a breakthrough treatment that works in a whole new way— treating hallucinations and delusions without blocking dopamine receptors and, therefore, not impairing motor function in Parkinson’s psychosis patients.”  Thus, Nuplazid is both a first step and a new approach for managing the symptoms of Parkinson’s psychosis. Only time will tell if Nuplazid is a hopeful beginning for treating Parkinson’s psychosis.

“If we want to cultivate hopefulness, we have to be willing to be flexible and demonstrate perseverance. Not every goal will look and feel the same. Tolerance for disappointment, determination, and a belief in self are the heart of hope.” Brené Brown

Cover image credit: http://www.fyiaonly.com/wp-content/uploads/2014/06/Great-Smoky-Mountains.jpg

Inverse agonist figure credit: https://upload.wikimedia.org/wikipedia/commons/6/6c/Inverse_agonist_3.svg

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Muhammad Ali (1942-2016): Parkinson’s and A Courageous Life Journey

“Don’t count the days; make the days count.” Muhammad Ali 

“God will not place a burden on a man’s shoulders knowing that he cannot carry it.” Muhammad Ali 

Brief Biography: On June 3, 2016, Muhammad Ali passed away due to respiratory complications from his advanced Parkinson’s Disease. He was born Cassius Clay in Louisville, Kentucky, in 1942. Muhammad Ali first became an Olympic gold medalist for boxing in 1960; next, the world heavyweight-boxing champion in 1964. Following his suspension for refusing the military draft to Vietnam, in the 1970’s, Ali reclaimed the heavyweight boxing title two more times.

Life with Parkinson’s: Muhammad Ali was diagnosed with early onset Parkinson’s in 1984; he was 42 years old. Following the diagnosis, Ali devoted much of his time to philanthropy. In 1997, Ali lent his name and helped to establish The Muhammad Ali Parkinson Center  (read about this impressive facility: https://www.barrowneuro.org/get-to-know-barrow/centers-programs/muhammad-ali-parkinson-center/ ). For all of his service to help others, Muhammad Ali received the Presidential Medal of Freedom in 2005.

In front of essentially the entire world in 1996, Muhammad Ali with very apparent symptoms of Parkinson’s, lit the flame at the Summer Olympics in Atlanta (click here to view this event). More recently in 2012, Ali was a bearer of the Olympic Flag during the opening ceremonies at the Summer Olympics in London. Ali had to be assisted to stand before the flag due to the advanced stage of his Parkinson’s.“Dr. Michael S. Okun, NPF’s National Medical Director, noted that Mr. Ali lived nearly half of his life with Parkinson’s, concluding ‘He was a force and an inspiration to all people with Parkinson’s and their families, and taught me a lot about how to live a hopeful and meaningful life with Parkinson’s disease.’” (http://parkinson.org/our-impact/press-room/press-releases/NPF-celebrates-life-of-Muhammad-Ali?_ga=1.125294986.1610237772.1459510190 )

A Courageous Life: As a boxer, Muhammad Ali was both inspiring and controversial. Muhammad Ali was possibly the most significant heavyweight boxing champion.

Most notably, I will always admire, respect and remember the grace and courage in which Muhammad Ali lived out his life with Parkinson’s . Ali’s brave actions in front of the world in the presence of his disorder were most memorable. His >30 years of life with Parkinson’s was a journey filled with hope and in service to others.

A very sad day in the passing of Muhammad Ali; he was a most remarkable person.

Here are a few indelible quotes from Muhammad Ali:
“He who is not courageous enough to take risks will accomplish nothing in life.”

“The best way to make your dreams come true is to wake up.”

“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

“What you’re thinking is what you’re becoming.”

“The man who views the world at 50 the same as he did at 20 has wasted 30 years of his life.”

“If my mind can conceive it, and my heart can believe it – then I can achieve it.”

“The Service you do for others is the rent you pay for your room here on Earth.”

“Go to College,
Stay in school,
If they can make penicillin out of moldy bread,
they can sure make something out of you.”

“All through my life, I have been tested. My will has been tested, my courage has been tested, my strength has been tested. Now my patience and endurance are being tested.”

Parkinson’s is my toughest fight. No, it doesn’t hurt. It’s hard to explain. I’m being tested to see if I’ll keep praying, to see if I’ll keep my faith. All great people are tested by God.”

Cover image credit: Getty Images/Andrew H. Walker

Side-by-side photographs credit: http://www.dailymail.co.uk/news/article-3626482/Raising-fists-final-time-Haunting-portrait-Muhammad-Ali-reveals-devastating-effects-Parkinson-s-boxing-legend-manages-smile-like-true-champion.html

Quotes/images credit: https://s-media-cache-ak0.pinimg.com/736x/b1/9a/45/b19a45aadef5beb5507d99ddf67309cc.jpg and https://s-media-cache-ak0.pinimg.com/736x/d0/4b/58/d04b584dad1b1067dd283e17f118a2f0.jpg and http://www.quote-coyote.com/album/small/Muhammad-Ali-Inspirational-Quotes.jpg