Category Archives: Courage

2018 Parkinson’s Awareness Month and 65 Quotes to Support Your Life With Parkinson’s

“Don’t give up. Don’t ever give up.” Jim Valvano

“Courage starts with showing up and letting ourselves be seen.” Brené Brown

Parkinson’s disease Awareness Month: Parkinson’s awareness month is exactly that.  You simply start by making people around you familiar with this disorder.  And you can help others learn more about this neurodegenerative disease.

Description of Parkinson’s disease: Instead of the usual written narrative, here are a couple of video presentations.

NPFiconFor further information also see: Understanding Parkinson’s.

 65* Quotes on Adversity, Hope, Journey, Life, and Persistence to Help You During the ‘Off-moments’ and to Remind You to Never Give up (*Why 65? My age later this year):

  1. “To me, hope is informed optimism.” Michael J. Fox
  2. “The truth is that on most days, there comes a point where I literally can’t stop laughing at my own symptoms.” Michael J. Fox
  3. “The strongest people are not those who show strength in front of us but those who win battles we know nothing about.” Anonymous

  4. “Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” Glenn Schweitzer
  5. “Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything.”Muhammad Ali
  6. “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.” Muhammad Ali
  7. “Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip Toe if you must, but take a step.” Naeem Callaway
  8. “When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.”  Christopher Reeve
  9. “Believe in yourself and all that you are. Know that there is something inside of you that is greater than any obstacle.” Christian D. Larson
  10. “You shouldn’t focus on why you can’t do something, which is what most people do. You should focus on why perhaps you can, and be one of the exceptions.” Steve Case
  11. “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don’t give up.” Anne Lamott
  12. “You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes.”  unknown
  13. “Champions aren’t made in gyms. Champions are made from something they have deep inside them—a desire, a dream, a vision. They have to have last-minute stamina, they have to be a little faster, they have to have the skill and the will. But the will must be stronger than the skill.”Muhammad Ali
  14. “The strongest people I’ve met have not been given an easier life. They’ve learned to create strength and happiness from dark places.”  Kristen Butler
  15. “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” Josh Shipp
  16. “It’s not selfish to love yourself, take care of yourself, and to make your happiness a priority.” Mandy Hale
  17. “Live to inspire, and one day people will say, because of you, I didn’t give up” unknown
  18. Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best. Doe Zantamata
  19. “I can’t tell you when, but I can promise you it will get better, it will get easier, and it will all be worthwhile. Just promise me you won’t ever give up.” unknown
  20. “Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” Hannah Brecher
  21. “We are stronger in the places we have been broken.” Ernest Hemingway
  22. “Just put one foot in front of the other.”  Austin Peck
  23. “Coming together is a beginning; keeping together is progress; working together is success.”  Henry Ford
  24. “Alone we can do so little; together we can do so much.”  Helen Keller
  25. “If everyone is moving forward together, then success takes care of itself.”  Henry Ford
  26. “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
  27. “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
  28. “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
  29. “If you stumble, make it part of the dance.” unknown
  30. “If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” Carmen Ambrosio
  31. “Please be patient with me. Sometimes when I’m quiet, it’s because I need to figure myself out. It’s not because I don’t want to talk. Sometimes there are no words for my thoughts.”  Kamla Bolaños
  32. “What would the hero of your life’s movie do right now? Do that!” Joe Rogan
  33. “Inspirations knock and hang around for a while and wait for some kind of response, which is the beginning of a creative act.” Thomas Moore
  34. “What you do makes a difference, and you have to decide what kind of difference you want to make.” Jane Goodall
  35. “What’s meant to be will always find a way” Trisha Yearwood
  36. “Do not pray for an easy life, pray for the strength to endure a difficult one.”  Bruce Lee
  37. “One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.” Albert Schweitzer
  38. “When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.” Peter Marshall
  39. “Ask yourself what problem you have right now. Not next year, tomorrow or five minutes from now. You can always cope with the now, but you can never cope with the future. Nor do you have to. The answer, the strength and the right action will be there when you need it. Not before or after.” Eckhart Tolle
  40. “Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” Lance Armstrong
  41. “If you are depressed you are living in the past.
    If you are anxious you are living in the future.
    If you are at peace you are living in the present.”
    Lao Tzu
  42. “To die is poignantly bitter, but the idea of having to die without having lived is unbearable.” Erich Fromm
  43. “Sometimes the hardest part isn’t letting go but rather learning to start over.” Nicole Sobon
  44. “You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” Thomas Merton
  45. “The journey of a thousand miles begins with one step.” Lao Tzu
  46. “Everyone is handed adversity in life. No one’s journey is easy. It’s how they handle it that makes people unique.” Kevin Conroy
  47. “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.” Eleanor Roosevelt
  48. “Hope is faith holding out its hand in the dark.” George Iles
  49. “Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.” Winston S. Churchill
  50. “Hope is being able to see that there is light despite all of the darkness.” Desmond Tutu
  51. “Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” Thich Nhat Hanh
  52. “There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden
  53. “Courage is not having the strength to go on; it is going on when you don’t have the strength. ”Theodore Roosevelt
  54. “The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” Ben Okri
  55. “Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” Kelly Hemingway
  56. “You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.” Richelle E. Goodrich
  57. “You can have anything you want if you want it badly enough. You can be anything you want to be, do anything you set out to accomplish if you hold to that desire with singleness of purpose.” Abraham Lincoln
  58. “Whatever you are, be a good one.” Abraham Lincoln
  59. “I know now, after fifty years, that the finding/losing, forgetting/remembering, leaving/returning, never stops. The whole of life is about another chance, and while we are alive, till the very end, there is always another chance.” Jeanette Winterson
  60. “Affliction comes to us, not to make us sad but sober; not to make us sorry but wise.” H.G. Wells
  61. “Since receiving my Parkinson’s diagnosis, my opinion of exercise has changed.  With Parkinson’s, I’m now exercising as if my life depends on it.”  Frank C. Church
  62. We are identified by our characteristic symptoms of our unwanted companion named Parkinson’s. We are all in this together, united by our disorder; held together by those who love and care for us.” Frank C. Church
  63. Today renews your lease on the rest of your life, enjoy it (get up, get out, get going). Today acknowledge your Parkinson’s; give it a nudge, because you are ready for the battle and for life.” Frank C. Church
  64. “The sum total of our health is a complex formula that differs slightly for each one of us.  Those of us with a progressive neurodegenerative disorder like Parkinson’s increases the complexity of this life-equation.” Frank C. Church
  65. “Living with Parkinson’s requires you to adapt to its subtle but progressive changes over a long period of time; you need to remain hopeful for many different things.” Frank C. Church

“When nothing seems to help, I go and look at a sonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that last blow that did it, but all that had gone before.”  Jacob A. Riis

Cover photo credit: https://uspstrackingtool.com/red-tulips-bouquet-of-flowers-wallpaper/

 

A Good Life With Parkinson’s

“I choose to make the rest of my life the best of my life.” Louise Hay

“Avoiding problems you need to face is avoiding the life you need to live.” Paulo Coelho

Try to live following the advice of the opening quotes: Today renews your lease on the rest of your life, enjoy it (get up, get out, get going). Today acknowledge your Parkinson’s; give it a nudge, because you are ready for the battle and for life.

18.01.13b.Live_Better_PD

Live a better and healthier life by following this circle of words [yes, they all begin with the letter ‘F’ (click here to download the schematic above)]:
Fit/fitness-
Exercise as much as your body can take, then do some more. Getting/staying fit really matters in your battle with Parkinson’s.

Fortitude-
Stay strong in your effort with your adversity.

Food- Feed your brain properly, fuel your body well; it will make a difference.

Flexible (two definitions)-
Stay flexible by frequent (I mean really often) stretching; you’ve got a life-altering disorder, stay flexible and let your life follow what happens because it’ll be okay.

Fulltime– It takes time and effort to manage your life. You can find the time because managing your life well from this minute on will matter later in your life;

Faith (multiple definitions)– Believe in your ability to successfully navigate your life; trust in your loved ones to support your journey; believe that a higher entity truly loves you and acknowledges your strength and passion for life.

Forty-winks and sleep some more- The brain is like a sponge that fills up all day with fluid; sleep allows the brain to drain, to renew, to fire-up strong upon waking; sleep is a very good thing.

A Good Life With Parkinson’s: Our Common Bond and Hope
I feel your stiffness; I know it well.

I sense your troubled thoughts; my mind also has questions.
I notice your tremor; mine can act up too.
I perceive your frustation; life with Parkinson’s can be problematic.
I see your shuffle; my right leg drags when I’m tired.
I admire your strength; I’ve got it too.
I acknowledge your life-accomplishments; we are still the same person as before Parkinson’s.
I see your honor; our work our living makes a difference.
I see your smile; those around us still care for us, no matter what.
I feel your effort; like you, I’ll never give up.

“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://ognature.com/path-snow-winter-mist-sunset-sun-trees-wallpaper-iphone-6/

 

64 Quotes on Persistence to Help Your Journey With Parkinson’s Disease

“Kites rise highest against the wind – not with it!” Winston Churchill

“Energy and persistence conquer all things.” Benjamin Franklin

Introduction: On January 1, LinkedIn announced that I had a work anniversary of 32 years at The University North Carolina at Chapel Hill ( if you include my postdoc at UNC-CH, this is a grand total of 36 years). My dear friend Lisa Cox (she is a graduate of The University North Carolina at Chapel Hill) wrote to congratulate me and said the following: “Grateful for your commitment to the University and to your students. Your steadfast determination is to be commended.”  Her use of the words ‘steadfast determination’  got me thinking about the word persistent  (steadfast is a synonym for persistent) and this thinking led to the current blog post.

Persistence in the backdrop of staying hopeful:  I truly admire and enjoy reading works by Dr. Brené Brown. Her insight, research/writing and her thoughtful commentary on many different topics are truly remarkable.  She has studied hope and when you have Parkinson’s hope is a very important word to embrace.  One of her stories on hope, mixed with persistence, deals with the work of C. R. Snyder, at the University of Kansas, Lawrence.  Embracing and expanding upon this work, “hope is a thought process; hope happens when (1) We have the ability to set realistic goals (I know where I want to go); (2) We are able to figure out how to achieve those goals, including the ability to stay flexible and develop alternative routes (I know how to get there, I’m persistent, and I can tolerate disappointment and try again); and (3) We believe in ourselves (I can do this!).” To read in-depth this presentation entitled “Learning to Hope–Brené Brown”, click here. And again the word ‘persistent’ stood out while reading this document.

Persistence and Parkinson’s:Persistence (per·sist·ence /pərˈsistəns/ noun) is defined as (1) firm or obstinate continuance in a course of action in spite of difficulty or opposition, and (2) the continued or prolonged existence of something.  If you’re going to thrive in the presence of Parkinson’s, you will definitely need persistence because you will be locked in a lifelong battle to resist its presence every minute of every day.  Besides being hopeful and positive, having persistence will help enable your daily journey with Parkinson’s.  In other words, persistence is not giving up without trying,  searching out and exploring new pathways for your life, and it certainly demands steadfast determination.

64* Quotes on Persistence to Help You Stay Positive and Hopeful, and to Keep You Exercising: (*Why 64? Because I’m 64 years old) I started with >100 quotes and ended up with this list; they are arranged alphabetically by the author’s first name. [This is the third time I’ve written about persistence in the presence of Parkinson’s; to read the first blog post “Persistence and Parkinson’s” click here, and to read the most recent blog post “Chapter 7: A Parkinson’s Reading Companion on Persistenceclick here.]  May these quotes about persistence bolster your daily dealing with this dastardly disorder named Parkinson’s.

  1. “I do the very best I know how, the very best I can and I mean to keep doing so until the end.” Abraham Lincoln
  2. “It’s not that I’m so smart, it’s just that I stay with problems longer.” Albert Einstein
  3. “The best view comes after the hardest climb.” Anonymous/Unknown
  4.  “Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide n.ot to surrender, that is strength.” Arnold Schwarzenegger
  5. “We are what we repeatedly do. Excellence, then, is not an act, but a habit.” Aristotle
  6. “Things turn out best for the people who make the best out of the way things turn out.” Art Linkletter
  7. “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.” Atul Gawande
  8. “You just can’t beat the person who never gives up.” Babe Ruth
  9. “History has demonstrated that the most notable winners usually encountered heartbreaking obstacles before they triumphed. They won because they refused to become discouraged by their defeat.” C. Forbes
  10. “As long as there’s breath in You–Persist!” Bernard Kelvin Clive
  11. “No great achievement is possible without persistent work.” Bertrand Russell
  12. “My greatest point is my persistence. I never give up in a match. However down I am, I fight until the last ball. My list of matches shows that I have turned a great many so-called irretrievable defeats into victories.” Bjorn Borg
  13. “In the confrontation between the stream and the rock, the stream always wins – not through strength, but through persistence.” Buddha
  14. “Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent.” Calvin Coolidge
  15. “Success is the result of perfection, hard work, learning from failure, loyalty, and persistence.” Colin Powell
  16. “It does not matter how slowly you go as long as you do not stop.” Confucius
  17.  “Don’t let the fear of the time it will take to accomplish something stand in the way of your doing it. The time will pass anyway; we might just as well put that passing time to the best possible use.” Earl Nightingale
  18. “A little more persistence, a little more effort, and what seemed hopeless failure may turn to glorious success.”Elbert Hubbard
  19. “If you are doing all you can to the fullest of your ability as well as you can, there is nothing else that is asked of a soul.” Gary Zukav
  20. ”Morale is the state of mind. It is steadfastness and courage and hope. It is confidence and zeal and loyalty. It is elan, esprit de corps and determination.” George C. Marshall
  21. “You go on. You set one foot in front of the other, and if a thin voice cries out, somewhere behind you, you pretend not to hear, and keep going.” Geraldine Brooks
  22. “Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.” Hal Borland
  23. “Perseverance is a great element of success. If you only knock long enough and loud enough at the gate, you are sure to wake up somebody.” Henry Wadsworth Longfellow
  24. “The difference between perseverance and obstinacy is, that one often comes from a strong will, and the other from a strong won’t.” Henry Ward Beecher
  25. “When you have a great and difficult task, something perhaps almost impossible, if you only work a little at a time, every day a little, suddenly the work will finish itself.” Isak Dinesen
  26. “Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before.” Jacob A. Riis
  27. “The most essential factor is persistence–the determination never to allow your energy or enthusiasm to be dampened by the discouragement that must inevitably come.” James Whitcomb Riley
  28. ”We all have dreams. But in order to make dreams come into reality, it takes an awful lot of determination, dedication, self-discipline, and effort.” Jesse Owens
  29. “This is the highest wisdom that I own; freedom and life are earned by those alone who conquer them each day anew.” Johann Wolfgang von Goethe
  30. “Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into air.” John Quincy Adams
  31. “Perseverance is failing 19 times and succeeding the 20th.” Julie Andrews
  32. “If you wish to be out front, then act as if you were behind.” Lao Tzu
  33. “You aren’t going to find anybody that’s going to be successful without making a sacrifice and without perseverance.“ Lou Holtz
  34. “Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity.” Louis Pasteur
  35. “Full effort is full victory.” Mahatma Gandhi
  36. “You’re not obligated to win. You’re obligated to keep trying to do the best you can every day.” Marina Wright Edelman
  37. “If you can’t fly, then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do, you have to keep moving forward.” Martin Luther King, Jr.
  38. “Courage doesn’t always roar, sometimes it’s the quiet voice at the end of the day whispering I will try again tomorrow.” Mary Anne Radmacher
  39. “Courage is the most important of all the virtues because without courage, you can’t practice any other virtue consistently.” Maya Angelou
  40. “You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” Maya Angelou
  41. “I’ve missed more than 9,000 shots in my career. I’ve lost almost 300 games. 26 times, I’ve been trusted to take the game winning shot and missed. I’ve failed over and over and over again in my life. And that is why I succeed.” Michael Jordan
  42. “Give the world the best you have and you may get hurt. Give the world your best anyway.” Mother Theresa
  43. “Patience, persistence, and perspiration make an unbeatable combination for success.” Napoleon Hill
  44. “It always seems impossible until it is done.” Nelson Mandela
  45. “I will persist until I succeed. Always will I take another step. If that is of no avail I will take another, and yet another. In truth, one step at a time is not too difficult. I know that small attempts, repeated, will complete any undertaking.” Og Mandino
  46. “Enter every activity without giving mental recognition to the possibility of defeat. Concentrate on your strengths, instead of your weaknesses… on your powers, instead of your problems.” Paul J. Meyer
  47. “He conquers who endures.” Persius
  48. “Our greatest glory is not in never failing, but in rising up every time we fail.” Ralph Waldo Emerson
  49. “We are human. We are not perfect. We are alive. We try things. We make mistakes. We stumble. We fall. We get hurt. We rise again. We try again. We keep learning. We keep growing. And we are thankful for this priceless opportunity called life.” Ritu Ghatourey
  50.  “Success is the sum of small efforts, repeated day in and day out.” Robert Collier
  51. “The best way out is always through.” Robert Frost
  52. “Your hardest times often lead to the greatest moments of your life. Keep going. Tough situations build strong people in the end.” Roy Bennett
  53. “There are two ways of attaining an important end, force and perseverance; the silent power of the latter grows irresistible with time.” Sophie Swetchine
  54. “To succeed, you must have tremendous perseverance, tremendous will. “I will drink the ocean,” says the persevering soul; “at my will mountains will crumble up.” Have that sort of energy, that sort of will; work hard, and you will reach the goal.” Swami Vivekananda
  55. “Our greatest weakness lies in giving up. The most certain way to succeed is to always try just one more time.” Thomas Edison
  56. “Permanence, perseverance, and persistence in spite of all obstacles, discouragement, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.” Thomas Carlyle
  57. “With ordinary talent and extraordinary perseverance, all things are attainable.” Thomas Foxwell Buxton
  58. “I’m a great believer in luck, and I find the harder I work, the more I have of it.” Thomas Jefferson
  59. “We are made to persist. That’s how we find out who we are.” Tobias Wolff
  60. “I am not judged by the number of times I fail, but by the number of times I succeed: and the number of times I succeed is in direct proportion to the number of times I fail and keep trying.” Tom Hopkins
  61. “The quality of a person’s life is in direct proportion to their commitment to excellence regardless of their chosen field of endeavor.”  Vince Lombardi
  62. “Most people never run far enough on their first wind to find out they’ve got a second.” William James
  63. “Continuous effort–not strength or intelligence–is the key to unlocking our potential.” Winston Churchill
  64. “If you’re going through hell, keep going. Winston Churchill
Motivation using quotes on persistence and pictures/diagrams/ideas related to Parkinson’s:  I am a very visual person and I also need motivation as the new year begins with winter cold in North Carolina  (yes, we got some snow/freezing rain/ice, and yes Chapel Hill was mostly brought to a standstill; so we move on and hope for an early spring).  Therefore, to help me stay motivated to exercise every day,  and to remind me of all the benefits that exercise provides me against Parkinson’s progression I made the following images.
 Also displayed below are 12 additional quotes mounted on some colorful artful backgrounds.   Hopefully, this will provide you a template to make your own favorite motivational group of persistence quotes.

Please stay focused on taking the best care of you by working well with your family and support team, be honest with your movement disorder Neurologist, get plenty of exercise and try to sleep well.  You hold the key to unlock the plan to manage your Parkinson’s.

“Strength is found in each of us.  For those of us with Parkinson’s, we use our personal strengths of character to bolster our hope, courage, mindfulness/contentment/gratitude, determination, and the will to survive. Stay strong. Stay hopeful. Stay educated. Stay determined. Stay persistent. Stay courageous. Stay positive. Stay wholehearted. Stay mindful. Stay happy. Stay you.”  Frank C. Church

Cover Photo credit: http://www.wallpaperup.com/202084/morning_ice_sunrise_lake_snow_forest_winter_reflection.html

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

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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

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