Category Archives: Courage

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

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

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

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

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

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

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

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

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

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

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

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

 

Parkinson’s Disease Research: A Commentary from the Stands and the Playing Field

“You can have a very bad end with Parkinson’s, but on the other hand, you can be like me, because I’m lucky. I’m not having a bad end.” Margo MacDonald

“My age makes me think how valuable life is. How bad is something like Parkinson’s in relation to not having life at all?” Michael J. Fox

Introduction: Last month, together with Dr. Simon Stott and his team of scientists (The Science of Parkinson’s Disease), we co-published a historical timeline of Parkinson’s disease beginning with the description of the ‘shaking palsy’ from James Parkinson in 1817. My post entitled “Milestones in Parkinson’s Disease Research and Discovery” can be read here (click this link). The Science of Parkinson’s Disease post entitled “Milestones in Parkinson’s Disease Research and Discovery” can be read here (click this link).

We spent a lot of time compiling and describing what we felt were some of the most substantial findings during the past 200 years regarding Parkinson’s disease.  I learned a lot; truly amazing what has been accomplished in our understanding of  such a complex and unique disorder.  Simon posted a follow-up note entitled “Editorial: Putting 200 years into context” (click this link). I have decided to also post a commentary from the standpoint of (i) being someone with Parkinson’s and (ii) being a research scientist.

“Every strike brings me closer to the next home run.” Babe Ruth

Baseball: I want to use the analogy of a baseball game to help organize my commentary. Baseball fans sit in the stands and have fun watching the game, thinking about the strategy behind the game, eating/drinking, and sharing the experience with family/friends/colleagues.   Most baseball players begin playing early in life and the ultimate achievement would be to reach the major leagues. And this would usually have taken many years of advancing through different levels of experience on the part of the ballplayer. How does how this analogy work for me in this blog? Stands: I am a person-with-Parkinson’s watching the progress to treat and/or cure this disorder. Playing field: I am a research scientist in a medical school (click here to view my training/credentials).

“Never allow the fear of striking out keep you from playing the game!”  Babe Ruth

Observation from the stands:
I am a spectator like everyone else with Parkinson’s. I read much of the literature available online.  Like you, I think about my disorder; I think about how it’s affecting me every day of my life. Yes, I want a cure for this disease.  Yes, I’m rather impatient too.  I understand the angst and anxiety out there with many of the people with Parkinson’s. In reality, I would not be writing this blog if I didn’t have Parkinson’s. Therefore, I truly sense your frustration that you feel in the presence of Parkinson’s, I do understand.  Given below are examples of various organizations and ads and billboards in support of finding a cure for Parkinson’s.  Some even suggest that a cure must come soon.   However, the rest of my post is going to be dedicated to trying to explain why it’s taking so long; why I am optimistic and positive a cure and better treatment options are going to happen.  And it is partly based on the fact that there really are some amazing people working to cure Parkinson’s and to advance our understanding of this disorder.

“When you come to a fork in the road take it.” Yogi Berra

Observations from the playing field (NIH, war on cancer, research lab, and advancing to a cure for Parkinson’s):

National Institutes of Health (NIH) and biomedical research in the USA: Part of what you have to understand, in the United States at least, is that a large portion of biomedical research is funded by the NIH (and other federally-dependent organizations), which receives a budget from Congress (and the taxpayers). What does it mean for someone with Parkinson’s compared to someone with cancer or diabetes? The amount of federal funds committed to the many diseases studied by NIH-funded-researchers are partly divvied up by the number of people affected. I have prepared a table from the NIH giving the amount of money over the past few years for the top four neurodegenerative disorders, Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis (ALS), and Huntington’s Disease, respectively [taken from “Estimates of Funding for Various Research, Condition, and Disease Categories” (click here)]. And this is compared to cancer and coronary arterial disease and a few other major diseases. Without going into the private organizations that fund research, a large amount of money comes from the NIH. Unfortunately, from 2003-2015, the NIH lost >20% of its budget for funding research (due to budget cuts, sequestration, and inflationary losses; click here to read further).   Therefore,  it is not an overstatement to say getting  funded today by the NIH is fiercely competitive.  From 1986 to 2015, my lab group was supported by several NIH grants and fellowships  (and we also received funding from the American Heart Association and Komen for the Cure).

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“In theory, there is no difference between theory and practice. But in practice, there is.” Yogi Berra

War against cancer: In 1971, Pres. Richard Nixon declared war against cancer and Congress passed the National Cancer Act.  This created a new national mandate “to support research and application of the results of research to reduce the incident, morbidity, and mortality from cancer.” Today, cancer is still the second leading cause of death in the USA; however, we’ve come such a long way to improving this statistic from when the Cancer Act was initiated.

Scientifically, in the 1970’s, we were just learning about oncogenes and the whole field of molecular biology was really in its infancy. We had not even started sequencing the human genome, or even of any organism.  We discovered genes that could either promote or suppress cellular growth.   We began to delineate the whole system of cell signaling and communications with both normal and malignant cells. We now know there are certain risk factors that allow us to identify people that may have increased risk for certain cancers. Importantly,  we came to realize that not all cancers were alike,  and it offered the notion to design treatment strategies for each individual cancer.  For example,  we now have very high cure rates for childhood acute leukemia and Hodgkin’s lymphoma and we have significantly improved survival statistics for women with breast cancer. Many might say this was a boondoggle and that we wasted billions of dollars  funding basic biomedical research on cancer; however, basic  biomedical research is expensive and translating that into clinical applications is even more expensive.  [ For a  very nice short review on cancer research please see the following article, it may be freely accessible by now: DeVita Jr, Vincent T., and Steven A. Rosenberg. “Two hundred years of cancer research.” New England Journal of Medicine 366.23 (2012): 2207-2214.]

“One of the beautiful things about baseball is that every once in a while you come into a situation where you want to, and where you have to, reach down and prove something.” Nolan Ryan

The biomedical research laboratory environment:  A typical laboratory group setting is depicted in the drawing below. The research lab usually consists of the lead scientist who has the idea to study a research topic, getting grants funded and in recruiting a lab group to fulfill the goals of the project.  Depending on the philosophy of the project leader the lab may resemble very much like the schematic below or may be altered to have primarily technicians or senior postdoctoral fellows working in the lab  (as two alternative formats). A big part of academic research laboratories is education and training the students and postdocs to go on to advance their own careers; then you replace the people that have left and you continue your own research.  Since forming my own lab group in 1986, I have helped train over 100 scientists in the research laboratory: 17 graduate students, 12 postdoctoral fellows, 17 medical students, and 64 undergraduates. The lab has been as large as 10 people and a small as it is currently is now with two people. People come to your lab group because they like what you’re doing scientifically and this is where they want to belong for their own further training and advancement.  This description is for an academic research  laboratory; and  I should also emphasize that many people get trained in federal government-supported organizations, private Pharma and other types of research environments that may differ in their laboratory structure and organizational format.

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“Hitting is 50% above the shoulders.” Ted Williams

 In search of the cure for Parkinson’s:    First, I understand the situation you’re in with Parkinson’s because I’m living through the same situation.   But when people find out I’m a research scientist they always wonder why aren’t we doing more to find a cure, and I  hear the sighs of frustration and I see the anxiety in their faces. Second, the previous three sections are not meant to be an excuse for why there is still no cure for Parkinson’s. It is presented in the reality of what biomedical research scientists must undergo to study a topic.  Third, the experiments that take place in basic biomedical research laboratory may happen over weeks to months if successful. Taking that laboratory data to the clinic and further takes months and years to succeed if at all.   The section on cancer reminds me a lot of where we are going with Parkinson’s and trying to advance new paradigms in the treatment and curative strategies.  Professionally, I have even decided  to pursue research funding in the area of Parkinson’s disease.   Why not spend the rest of my academic career studying my own disease; in the least I can help educate others about this disorder. Furthermore, I can assure you from my reading and meeting people over the last couple of years, there are many hundreds of scientists and clinicians throughout this world studying Parkinson’s and trying to advance our understanding and derive a cure.  I see their devotion, I see their commitment to helping cure our disorder.

The science behind Parkinson’s is quite complicated. These complications suggest that Parkinson’s may be more of a syndrome rather than a disease. Instead of a one-size-fits-all like a disease would be classified; Parkinson’s as a syndrome would be a group of symptoms which consistently occur together.  What this might imply is that some treatment strategy might work remarkably well on some patients but have no effect on others. However, without a detailed understanding and advancement of what Parkinson’s really is we will never reach the stage where we can cure this disorder.

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In a recent blog from the Science of Parkinson’s disease, Simon nicely summarized all the current research in 2017 in Parkinson’s disease (click here to read this post). To briefly summarize what he said is that there are multiple big Pharma collaborations occurring to study Parkinson’s.  There are more than 20 clinical trials currently being done in various stages of completion to prevent disease progression but also to try to cure the disorder.  From a search of the literature, there are literally hundreds of research projects going on that promise to advance our understanding of this disorder. With the last point, it still will take time to happen. Finally, I am a realist but I’m also optimistic and positive that we’re making incredible movement toward much better therapies, which will eventually lead to curative options for Parkinson’s.

And a final analogy to baseball and Parkinson’s, as Tommy Lasorda said “There are three types of baseball players: those who make it happen, those who watch it happen, and those who wonder what happens.”  I really want to be one of those scientists that help make it happen (or at least to help advance our understanding of the disorder).

“You can’t expect life to play fair with your heart or your brain or your health. That’s not the nature of the game we call life. You have to recognize the nature of the game and know that you can do your best to make the right choices, but life if going to do whatever the hell it pleases to you anyway. All you can control is how you react to whatever life throws at you. You can shut down or you can soar.” Holly Nicole Hoxter

Cover photo credit: PNC Park photo: i.imgur.com/32RWncK

Sign post scienceofparkinsons.com/

Building Empathy for Parkinson’s

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

“To perceive is to suffer.”  Aristotle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Nothing worth having comes easy.” Theodore Roosevelt

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Part 2: Journey to Parkinson’s and Magnetic Resonance Imaging

“The best thing about the future is that it comes one day at a time.” Abraham Lincoln

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” Ralph Waldo Emerson

Introduction: Along the way to the diagnosis of Parkinson’s, you may have to undergo several different kinds of tests to help your physician(s) learn what actually is going on with your physiology and neurological network.  Remember there is neither a reliable blood test nor a comprehensive genetic marker evaluation to provide a diagnosis of Parkinson’s. Therefore, the exams I’m getting ready to describe are sometimes done to exclude other disorders and to further implicate Parkinson’s.  My Neurologist says the most helpful thing is the actual patient interview (History and Physical) since most people with Parkinson’s have a characteristic set of signs and symptoms.

These posts (a series of 5 procedures) are purely descriptive/informational but they are important to describe because they can be kind of intimidating and nerve-racking to undergo (just in case any of these tests are suggested by your physician team).  Let me be clear, I am not recommending any of these procedures for you (I’m a basic scientist not a physician). Interestingly, my Neurologist was involved only in the MRI and sleep study, which were done after my diagnosis of Parkinson’s. The other procedures were done before my diagnosis as we (another group of very talented physicians) were trying to sort out what was wrong. These are the procedures:

Part 1 described the Barium Swallow test (click here to read this post);
Part 2 gives an overview of Magnetic Resonance Imaging (MRI) [Current post];
Part 3 highlights Polysomnography, which is a sleep study;
Part 4 presents Electromyography (EMG), which measures nerve/muscle interactions;
Part 5 characterizes Transradial Cardiac Catheterization and Angiography.

“Life is simple. Everything happens for you, not to you. Everything happens at exactly the right moment, neither too soon nor too late. You don’t have to like it… it’s just easier if you do.” Byron Katie

ABC’s of MRI:  Magnetic resonance imaging (MRI) uses powerful magnetic fields and radio waves to produce images of organs and structures inside your body. MRI scans are useful to help physicians diagnose a variety of disease processes, from torn ligaments to visualizing tumors. In Parkinson’s and related disorders, MRI scans are valuable for examining the brain and spinal cord.  During the scan, you lie on a table that slides inside a tunnel-shaped machine (pictured below). Good news is the scan is painless; bad news is the MRI machine is very loud. They will likely offer you earplugs.  Use the earplugs because it is that loud (magnets are being re-positioned).  If you are claustrophobic, request a damp wash cloth to place over your eyes.   They may offer you pillows for support, and they will instruct you and make sure you understand you need to be still.  There will be an emergency call button, laid close to your hand; just in case for whatever reason you need to terminate the scan.  Finally, the average duration of the scan is ~45 minutes; you need to come prepared for this time to be as relaxed and still as possible. The staff helping me get ready for my MRI were very kind, patient and friendly; they were also very knowledgeable.

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

Are there any special precautions beforehand? No, there is little to no preparation required before getting an MRI scan. You will be asked to change into a gown; your clothes are stored in a locked closet. The only unusual preparation is that all removable metallic objects must be left outside the shielded MRI room itself, including removable hearing aids, dentures and other prosthetic devices.  Furthermore, magnetic strips on credit cards can be damaged by the MRI magnet.

“Our greatest glory is not in never falling, but in rising every time we fall.” Confucius

How MRI works ? (Taken from http://www.livescience.com/39074-what-is-an-mri.html): “The human body is mostly water. Water molecules (H20) contain hydrogen nuclei (protons), which become aligned in a magnetic field. An MRI scanner applies a very strong magnetic field (about 0.2 to 3 teslas, or roughly a thousand times the strength of a typical fridge magnet), which aligns the proton ‘spins’.

The scanner also produces a radio frequency current that creates a varying magnetic field. The protons absorb the energy from the variable field and flip their spins. When the field is turned off, the protons gradually return to their normal spin, a process called precession. The return process produces a radio signal that can be measured by receivers in the scanner and made into an image.

Protons in different body tissues return to their normal spins at different rates, so the scanner can distinguish among tissues. The scanner settings can be adjusted to produce contrasts between different body tissues. Additional magnetic fields are used to localize body structures in 3D.”

“Success is not final, failure is not fatal: it is the courage to continue that counts.” Winston Churchill

Why did your neurologist order the MRI? Mostly to eliminate other reasons for our symptoms of Parkinson’s; such as a stroke (ischemic or hemorrhagic), trauma resulting in bleeding (hemorrhage), or brain tumor. If there are no signs of a stroke, other forms of bleeding,  or brain tumor, most MRI brain scans of people with Parkinson’s will appear normal.

mri_substantia_nigra_brain
Example of what the mid-brain looks like from the MRI scan (*SN = Substantia nigra, the dopamine-producing region).

Good news/Bad news: The difficult issue is that you’ve just been told that you have Parkinson’s; however, let’s do the MRI scan to rule out stroke, bleeding/trauma, tumor just in case.  I understand what you are feeling, I do.  Knowing you have Parkinson’s takes your breath away; verifying it by eliminating these other processes mentioned above, still sucks.  My Neurologist told me that my brain was ‘unremarkable’; in other words, you’ve got Parkinson’s.  Stay focused, keep an even keel, your life has changed; however, your life is still relevant, keep going forward.

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

“Never give up, for that is just the place and time that the tide will turn.” Harriet Beecher Stowe

References about MRI:
http://www.webmd.com/a-to-z-guides/magnetic-resonance-imaging-mri#1
http://www.mayoclinic.org/tests-procedures/mri/home/ovc-20235698
http://www.medicalnewstoday.com/articles/146309.php
http://www.livescience.com/39074-what-is-an-mri.html
https://en.wikipedia.org/wiki/Magnetic_resonance_imaging

Cover photo credit: http://www-tc.pbs.org/wgbh/nova/next/wp-content/uploads/2013/11/malbec-grapes.jpg

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The Mask of Parkinson’s

“I wear the mask. It does not wear me.” Man in the Iron Mask

“See to it, then, that the light within you is not darkness.” Luke 11:35

Précis: The simplest way to describe Parkinson’s is that it’s a movement disorder due to the reduction of dopamine production.  Sometimes one of the more obvious places this absence of dopamine is noticed is the reduction of facial expressions (also referred to as masked facies or hypomimia).  The “mask of Parkinson’s” is further described below.

Loss of facial expression: There are 43 muscles in the face, which are all mostly controlled by the seventh cranial nerve.  Johann Kaspar Lavater said “…The human face is nature’s tablet, the truth is certainly written thereon.” We view the smile as a sign of friendship, happiness, and acceptance; while we view the frown as a sign of sadness or unacceptable.  The Parkinson’s face is somewhat less expressive than before; somewhat more rigid than before.  Many people-with-Parkinson’s also have chronic stiff necks; however, that doesn’t make us Frankenstein.

Scenario #1: You’ve played 17 holes of golf, and you approach the 18th hole to finish the round. This is a long par three with a lake between you on the tee box and the putting surface.  Your three golf buddies have already safely hit their balls over the lake;  you  launch the ball over the water and safely onto the green (this is a big deal).  Without Parkinson’s, your facial expression and your exuberance are so obvious.  With Parkinson’s, your joy and exuberance are still over-flowing inwardly yet it is displayed in a more muted  manner.

‘Life is a mask through which the universe expresses itself.” Frank Herbert

“You wear a mask for so long, you forget who you were beneath it.” Alan Moore

Changes in your voice: The loss of dopamine in your brain leads to reduced volume in your voice along with your voice becoming flatter/softer in tone.  The same process affecting your face is happening in your voice. If you think of dopamine as a “messenger service”, the brain uses it to send orders/messages to nerves.  When dopamine-producing cells die, all muscles are affected and diminish, including muscles involved in speaking, swallowing, facial motion, legs and  walking, and hand/arm movements.

Scenario #2:  You and your partner are attending a college basketball game;  your home team is 3-points ahead of your biggest rival, and it’s near the end of the second half.  Game over, your team wins, let the fun begin.  Like everyone else in the arena, you are standing, jumping around, high-five’s all near you, and you are shouting (and singing) your lungs out.  Such happens during great college basketball rivalry games.  Without Parkinson’s, all of this is a reality, a dream come true.  There is a feeling of satisfaction and there is a huge positive feeling from the game.  With Parkinson’s, there is the same positive feeling of happiness but with a diminished ability to clap  continuously and you’re less able to shout and sing along loudly with everybody.

Two famous masks:

“Without wearing any mask we are conscious of, we have a special face for each friend.’ Oliver Wendell Holmes

“A mask tells us more than a face.” Oscar Wilde

Consequences of the ‘Parkinson’s Mask’: The change is subtle over time. Mostly,  there is a softness to your voice, your smile is not as big, and you don’t blink your eyes as much.

Subtle differences in the before/after pictures (I’m also younger in the without PD pictures):

16-12-17photoscomp-pd

Because I do a lot of teaching, I get a lot of teaching evaluations and critiques. Here are two comments from two medical students regarding my lecturing in Immunology (one of the medical school courses I co-direct and teach in):

“Dr. Church is a wonderful lecturer! Not only is he easy to follow during lectures as far as explaining concepts is concerned, but his dedication to his students, their questions, and their general well-being never ceases to amaze me.

“Dr. Church should take it as a huge compliment that he was able to convey enthusiasm about the topic and inspire passion in students despite his expression often being limited by Parkinson’s.”

LSVT LOUD® can certainly help boost the volume and tone of your voice. If you use it and practice, it will make a difference.  My Speech Pathologists told me that we think we’re speaking at a normal volume but we’re really not.  Your goal is to train your brain to really speak loud (almost shouting). You can also practice making accentuated facial motions, trying to accentuate what’s going on with your face. You can practice smiling large, and other facial exercises (try practicing your vowels).  I have never had a loud voice and I’m not an overly expressive person; having Parkinson’s has softened everything. When you listen to someone speaking, you also listen with your eyes; thus,  the reduction in visual cues makes it harder to understand you.  To continue to get these positive comments shown above, I need to be constantly practicing on speaking louder and working on my facial exercises.

“Take the emotional temperature of those listening to you. Facial expressions, voice inflection and posture give clues to a person’s mood and attitude.” John C. Maxwell

“People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” Elisabeth Kubler-Ross

Resist the evolving Parkinson’s mask:  The worst-case scenario to what I’ve been describing is the total outward masking/blocking of your inner self and its expression. We must resist that change, we must really work hard to speak louder and to over-accentuate our facial motion to show the emotion that’s within us. Change may be subtle but change is inevitable for most of us regarding this mask. Stay vigilant. Let’s keep working on talking louder and being more expressive. The inner you is still there, it’s functioning and still wanting to get out. Keep working.

“When we can let go of what other people think and own our story, we gain access to our worthiness—the feeling that we are enough just as we are and that we are worthy of love and belonging. When we spend a lifetime trying to distance ourselves from the parts of our lives that don’t fit with who we think we’re supposed to be, we stand outside of our story and hustle for our worthiness by constantly performing, perfecting, pleasing, and proving. Our sense of worthiness—that critically important piece that gives us access to love and belonging—lives inside of our story.” Brené Brown

Cover photo credit: http://7-themes.com/6793576-free-pacific-ocean-wallpaper.html