Category Archives: Happiness

Understanding The Positive Health Benefits of Gratitude

“If the only prayer you ever say in your entire life is ‘thank you’, it will be enough.” Medieval German Theologian Meister Eckhart

“The smallest act of kindness is worth more than the greatest intention.” Khalil Gibran.

Preface: Gratitude is good for you. The Roman philosopher Seneca said, “Nothing is more honorable than a grateful heart.” The Roman senator Cicero remarked, “Gratitude is not only the greatest of virtues but the parent of all others.” Recognize the health benefits of being grateful.  Why? Gratitude will lead you to the fountain of hope; it is good for your heart, soul, mind, and practicing gratitude will be beneficial for your life with Parkinson’s.

Introduction: In the backdrop of having a chronic disorder like Parkinson’s disease, it is easy to get trapped and driven down emotionally from its daily burden. Life happens and we are constantly making micro- and macro-decisions, big and small changes in direction, and it seems to me the list grows with time. Today’s post is centered on gratitude, not to complicate your life, but as a reminder that being thankful can improve your health all on its own.

“Develop an attitude of gratitude, and give thanks for everything that happens to you, knowing that every step forward is a step toward achieving something bigger and better than your current situation.” Brian Tracy

Gratitude Defined: [grat·i·tudeˈɡradəˌt(y)o͞od/] Gratitude is from the Latin word gratus, meaning “pleasing” or “thankful,” Words from the Latin gratus have something to do with being pleasing or being thankful. To feel grateful is to feel thankful for something. Gratitude is a feeling of thankfulness (Merriam-Webster). Thank you in several languages is shown below (image credit).

h-GRATITUDE-640x362

“No duty is more urgent than that of returning thanks.” James Allen

Studies on Gratitude and Health: Doing a PubMed search for “Gratitude” reveals >1000 papers/chapters/books; searching for “gratitude and health” shows >500 citations.  Outside of PubMed, there are numerous reviews and magazine/newspaper/journal articles describing the health benefits of being thankful (having gratitude).  In the end, I will list several for your further viewing/reading. Here are some highlights linking gratitude and a better life.

  • Blessings vs. Burdens- In 2003, Emmons and McCullough published a landmark study of gratitude and well being entitled “Counting Blessings Versus Burdens: An Experimental Investigation of Gratitude and Subjective Well-being in Daily Life”.  They described 3 experiments, two groups were healthy college-aged students and the third group was adults with various neuromuscular disorders.  Within each separate study, some subjects were asked to maintain a journal on a weekly basis for 10 weeks, and others on a daily basis for 2 or 3 weeks.  They all kept records of both positive and negative effects they had experienced; including their behavior coping with these events (health behavior and physical symptoms), and their overall appraisal of life.  Subgroups from each study were asked to focus their journal entries on different things: (Group A) this group recorded things for which they were grateful (they were “counting their blessings”); (Group B) this group recorded things they found irritating and/or annoying (they were “counting their burdens”); and (Group C) this group recorded things that had a major impact on them.  After compiling the data from the 3 experiments, two trends stood out. (1) The participants from ‘Group A’, those recording things for which they were ”grateful’, showed much higher levels of well-being compared to Groups ‘B’ and ‘C’; and this was particularly evident when compared to those recording events that were ‘annoying or irritating’. (2) The positive effects of gratitude in the 10 week study, compared to the 2 or 3 week studies, showed not only better well-being; these participants also showed social and physical benefits.
  • Feeling Happy- In a separate study from 2002, McCullough et al. reported that recording your blessings on a regular basis was linked with increased happiness. In a separate study, Kurtz et al. (2008) showed that this feeling of happiness through gratitude was sustained for several months.
  • Optimism– A study by Overwalle et al. (1995) found a positive link between the ability to express gratitude and the feeling of well-being; suggesting these individuals had an improved/optimistic outlook of their future.
  • Strengthening Bonds and Building Relationships- The link of happiness from gratitude was shown to strengthen bonds, enable friendships, and support social networks.  The results from Reynolds (2008) showed that by practicing gratitude, participants felt more cared for/loved by others.
  • Mapping Neural Networks of Gratitude- In a 2015 paper entitled “Neural correlates of gratitude”, Fox et al. used magnetic resonance imaging (MRI) to map the effect of gratitude in volunteers. They tested a hypothesis that gratitude activity would be linked to brain regions associated with moral cognition, value judgment and theory of mind. Their results showed that gratitude was correlated with brain activity in the anterior cingulate cortex (ACC) and medial prefrontal cortex (mPFC), which supported their hypothesis (see drawing below).

18.04.12.ACC_mPFC_Thalamus.

“Let us be grateful to people who make us happy.” Marcel Proust

 Linking Gratitude to the Anterior Cingulate Cortex and Basal Ganglia:  The anterior cingulate cortex (ACC) can be described as a ‘neural network interface’ between emotion, sensation, and action. The ACC is linked anatomically with brain areas associated with each of these functions. An important interaction of the ACC is highlighted by its reciprocal connections to the reward centers of the brain, which includes the orbitofrontal cortex, insula, and the basal ganglia. Thus, the ACC is a target for the dopamine-expressing neurons from the substantia nigra (part of the basal ganglia; see figure below).  Understanding the reward of gratitude within the brain has given us an appreciation to what leads to a healthier and happier self. To further augment the benefits of gratitude, we enlist neurotransmitters (serotonin and dopamine):

serotonin.A Squeeze of Serotonin-  Serotonin is an elixir that boosts our mood, enhances will-power and eliminates self-doubt. The anterior cingulate cortex (ACC)  releases serotonin (i) when we write about gratitude and (ii) when we reflect about the positives in our lives (and our work).

dopamine.A Drop of Dopamine- Dopamine makes us feel good. With respect to practicing gratitude, we release dopamine (from the substantia nigra in the basal ganglia) (i) when we express gratitude for what’s good in our lives and (ii) when we offer gratitude for someone who has helped us thrive at life/work,

5379005_orig

“We must find time to stop and thank the people who make a difference in our lives.” John F. Kennedy

Gratitude Promotes the “4H Club” That Includes Happy, Healthy, Heartfelt, and Hopeful: I am neither a psychologist nor a neurologist, but I truly enjoyed reading the Emmons and McCullough (2003) paper described above (“Counting Blessings Versus Burdens: An Experimental Investigation of Gratitude and Subjective Well-being in Daily Life”).  First, it was well-written and easy to follow.  Second, they asked and answered some very important questions linked to gratitude.  Clearly, their work was preceded by other studies; however, their results likely provided a foothold for others to launch their ideas about how gratitude influences the human condition. In summarizing many studies, the folks at Happier Human (What About Happiness?) posted an amazing article entitled “The 31 Benefits of Gratitude You Didn’t Know About: How Gratitude Can Change Your Life” (click here) along with the figure below showing the huge overall impact of gratitude on human happiness (credit).

Benefits-of-Gratitude5

Remember, I am not a psychologist.  However, I felt that four major themes could be used to represent the positive impact of gratitude. Borrowing from the ‘4H Club’ name, the benefits of gratitude could make someone Happy, Healthy, Heartfelt, and Hopeful (see Figure below). And there are numerous studies to support the positive impact of gratitude on these four aspects of life (see references cited at the end).

Screenshot 2018-04-10 23.49.01

“To give thanks in solitude is enough. Thanksgiving has wings and goes where it must go. Your prayer knows much more about it than you do.” Victor Hugo

Pursuing Happiness Through Gratitude and How to Achieve it: The best strategy for expressing gratitude requires your investment of time to create and maintain a gratitude-journal.  The idea is for your gratitude-journal to have short statements where you describe your gratitude, you reflect on your positive life-events, you give thanks to others, you think-ponder deeply, and write 3-5 things per time and you decide on the frequency (every few days, more or less, but you decide).   Here are some examples:

  • I hit golf balls at the driving range 2 days in a row this week, what fun;
  • Spring weather finally has arrived, it waited ’til now but that’s OK;
  • Got 6.5 hours of sleep one night last weekend (yay!);
  • A reader of the blog wrote to tell me how much he appreciates and values my blog posts [and that he was my biggest fan (thank you so much)];
  • I’ve enjoyed teaching my undergraduate class this semester;
  • Thankful for all of my favorite Physical Therapists who inspire me to exercise and to stay healthy (“Keeping your body healthy is an expression of gratitude to the whole cosmos — the trees, the clouds, everything.” Nhat Hanh);
  • So very proud of CJ for presenting her poster this week at the University Undergraduate Student Research Day;
  • Very thankful for the incredible help Marissa and Shelby have provided me as Teaching Assistants this semester;
  • Look forward to seeing my sisters in the near future;
  • Having lunch tomorrow with 2 former students from my undergraduate class, and this week I went out for lunch with the current class (I learn much from these events);
  • Received an amazing thank-you note from a former student;
  • Very fortunate to have Susan in my life, look forward to catching up soon.

“For each new morning with its light, For rest and shelter of the night, For health and food, for love and friends… Feeling gratitude and not expressing it is like wrapping a present and not giving it.” William Arthur Ward

Benefits of Gratitude and Health in the Presence of Parkinson’s: The anterior cingulate cortex (ACC) and medial prefrontal cortex (mPFC) of the brain are the key components that respond to gratitude. There is no doubt that people-with-Parkinson’s experience the benefits of gratitude and the 4H’s (Happy, Healthy, Heartfelt, and Hopeful).  However, the ACC communicates with the basal ganglia, which implies some role for dopamine. Thus, we must believe we still synthesize enough dopamine to realize the positive effects from gratitude (well, this is what I believe).

In closing, as I said at the start, I am convinced that gratitude will lead you to the fountain of hope; it is good for your heart, soul, mind, and practicing gratitude will be beneficial for your life with Parkinson’s. May you continue to be thankful. May the positive effects from gratitude provide you a constant source of happiness and good health that are reinforced by heartfelt feelings and hope for years to come.

“Thanks are the highest form of thought.” Gilbert K Chesterton

References For Your Further Reading:
Emmons RA, McCullough ME. Counting blessings versus burdens: an experimental investigation of gratitude and subjective well-being in daily life. Journal of personality and social psychology. 2003;84(2):377-89. Epub 2003/02/15. PubMed PMID: 12585811.

Fox GR, Kaplan J, Damasio H, Damasio A. Neural correlates of gratitude. Frontiers in psychology. 2015;6:1491. Epub 2015/10/21. doi: 10.3389/fpsyg.2015.01491. PubMed PMID: 26483740; PMCID: PMC4588123.

The 31 Benefits of Gratitude You Didn’t Know About: How Gratitude Can Change Your Life (click here).

McCullough ME, Emmons RA, Tsang J. The grateful disposition: a conceptual and empirical typology. J Pers Soc Psychol. 2002;82:112–127.

Kurtz JL, Lyubomirsky S. Towards a durable happiness. In: Lopez SJ, Rettew JG, eds. The Positive Psychology Perspective Series. Vol 4. West-port, CT: Greenwood Publishing Group; 2008:21–36.

Overwalle FV, Mervielde I, De Schuyter J. Structural modeling of the relationships between attributional dimensions, emotions, and performance of college freshmen. Cognition Emotion. 1995;9:59–85.

7 Surprising Health Benefits of Gratitude (click here).

Martins A, Ramalho N, Morin E. A comprehensive meta-analysis of the relationship between Emotional Intelligence and health. Personality and Individual Differences. 2010;49(6):554-64. doi: https://doi.org/10.1016/j.paid.2010.05.029.

Alspach G. Extending the tradition of giving thanks recognizing the health benefits of gratitude. Crit Care Nurse. 2009;29(6):12-8. doi: 10.4037/ccn2009331. PubMed PMID: 19952333.

Emmons RA, Crumpler CA. Gratitude as a Human Strength: Appraising the Evidence. Journal of Social and Clinical Psychology. 2000;19(1):56-69. doi: 10.1521/jscp.2000.19.1.56.

Ma LK, Tunney RJ, Ferguson E. Does gratitude enhance prosociality?: A meta-analytic review. Psychological bulletin. 2017;143(6):601-35. Epub 2017/04/14. doi: 10.1037/bul0000103. PubMed PMID: 28406659.

7 Ways to Boost Your Gratitude (click here).

Reynolds DK. Naikan Psychotherapy: Meditation for Self-Development. Chicago, IL: University of Chicago Press; 1983.

O’Connell BH, O’Shea D, Gallagher S. Feeling Thanks and Saying Thanks: A Randomized Controlled Trial Examining If and How Socially Oriented Gratitude Journals Work. Journal of clinical psychology. 2017;73(10):1280-300. Epub 2017/03/07. doi: 10.1002/jclp.22469. PubMed PMID: 28263399.

Sirois FM, Wood AM. Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis. Health psychology : official journal of the Division of Health Psychology, American Psychological Association. 2017;36(2):122-32. Epub 2016/10/28. doi: 10.1037/hea0000436. PubMed PMID: 27786519.

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend.” Melody Beattie

 Cover photo credit: https://visitsrilanka.com/news/its-blooming-spring-22-great-uk-walks/

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/

 

Living and Working with “HOPE” in the Presence of Parkinson’s

“Life is difficult. This is the great truth, one of the greatest truths-it is a great truth because once we see this truth, we transcend it.” M. Scott Peck

“Life is hard. Life is beautiful. Life is difficult. Life is wonderful.” Kate DiCamillo

Introduction: A student and loyal reader of this blog recently asked “What do I do with all of the advice/tips/suggestion posts from the blog?” My reply was they help me balance out my day-to-day life; especially for work and to protect my time for exercise and time to spend with the significant-people in my life.  I typically print out the 1-page summaries and keep them in a folder, or post them at work, as reminders to what I value.  “What about all of your supportive and descriptive statements about living well with Parkinson’s disease?  I bet your readers of the blog would enjoy having some of your statements compiled like your advice posts, don’t you agree?”  My response was you want me to make some 1-page handouts of my comments? Yes, I could do that. That kind of a handout could help me as well; they could also serve as a roadmap to where the blog has traveled.  Interesting questions/suggestions, thanks for asking them.

“If you don’t know where you are going, you might wind up someplace else.” Yogi Berra

The tenacity of hope: There are 4 broad goals to this blog: i) describe living with Parkinson’s (“Life Lessons“); ii) report emerging medical strategies for treating/managing/curing Parkinson’s (“Medical Education“); iii) support mechanism to anyone with Parkinson’s or any of the neurodegenerative disorders (“Strategy for Living“); and iv) educate by presenting scientific aspects of Parkinson’s (“Translating Science”).  Throughout much of the posts here, I firmly believe that words/concepts like hope, positive, persistent, staying happy and healthy, exercise (a lot, daily if possible), and refuse to give up are all important ‘life-lines’ for us to adopt in our dealing with this disorder.  Today’s message returns to hope and “HOPE”.  Hope is defined by the Cambridge dictionary as “the feeling that something desired can be had or will happen”.  I use HOPE as an acronym in Parkinson’s and it stands for:

H = Hope/Health(y)
O = Optimistic/Positive
P = Persistent/Perseverance
E = Enthusiasm for life, for career, and for exercise

Steve Gleason said “Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love – I think that’s the meaning of this human experience.”  I really like the sentiment of his statement and admire his courage through adversity.  It reminds me that we are a community with a shared theme; while we are spread out throughout the world, we understand one another because Parkinson’s has been sewn in to the fabric of our lives. I am also convinced that staying hopeful and using HOPE gives us tenacity to deal with the subtle changes being forced upon us by the ever present Parkinson’s.

“Your qualifications, your CV, are not your life, though you will meet many people of my age and older who confuse the two. Life is difficult, and complicated, and beyond anyone’s control, and the humility to know that will enable you to survive its vicissitudes.” J.K. Rowling

Living and working with HOPE: This current post reinforces the meaning for HOPE.  It reminds me of Stevie Nicks and Fleetwood Mac’s Landslide where she sings “Can I sail through the changin‘ ocean tides? / Can I handle the seasons of my life?” We confront both of these questions daily with Parkinson’s.  My hope is you find reassurance that your life and world are still meaningful, and you are not battling Parkinson’s alone. We know and we understand what you are confronting each day; thus, be persistent and remain hopeful.

Here is a link to a SlideShare file that will allow you to easily read/view all of these 1-page handouts.  You do not need a login, it’s free. You can read, clip and copy individual slides (1-page handouts); it even will let you download the entire file: click here to view Living and Working with “HOPE” in the Presence of Parkinson’s. Alternatively, here is the URL: https://www.slideshare.net/FrankChurch1/living-and-working-with-hope-in-the-presence-of-parkinsons  And finally, in case the above link proves problematic, here is a copy of these 1-page summaries (click here to download PDF file).  I have enjoyed re-reading the old blog posts these were derived from (some of these were previously posted and several are new) and they are presented as follows:

  • Part 1: Some of Frank’s quotes about living with Parkinson’s (four 1-page handouts);
  • Part 2: Suggestions, character traits, and tips for the journey through life and career in the absence and presence of Parkinson’s (seven 1-page summaries);
  • Part 3: Health and exercise while living with Parkinson’s (five 1-page summaries);
  • Part 4: Historical time-line of Parkinson’s disease (six 1-page reports)

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

Know that wherever you are in your life right now is both temporary, and exactly where you are supposed to be. You have arrived at this moment to learn what you must learn, so you can become the person you need to be to create the life you truly want. Even when life is difficult or challenging-especially when life is difficult and challenging-the present is always an opportunity for us to learn, grow, and become better than we’ve ever been before.” Hal Elrod

Cover photo credit: asisbiz.com/USA/17-Mile-Drive/images/The-Lonely-Cypress-Tree-17-Mile-Drive-Monterey-California-July-2011-06.jpg

Dopamine Agonist Withdrawal Syndrome (DAWS) in Parkinson’s

“Some remedies are worse than the disease.” Publilius Syrus

“Each patient carries his own doctor inside him.” Norman Cousins

Summary: Dopamine agonists are widely used in the treatment of Parkinson’s, especially as a first-line therapy. Some patients on a dopamine agonist experience side-effects that require either tapering or discontinuation of the drug.  First described in 2010, dopamine agonist withdrawal syndrome (DAWS) is a complication of ~20% of Parkinson’s patients who are either lowering or stopping the dopamine agonist.  DAWS presents as a cluster of physical and behavioral symptoms [e.g., agitation, depression, drug craving, and panic attacks (to give a few possible symptoms)]. There is no known standard-of-care in dealing with DAWS in Parkinson’s. Presented here is a brief overview of DAWS in Parkinson’s including dopamine agonists, clinical description, risk factors and prevalence, mechanism of action, treatment/management, and key publications.

“To heal illness, begin by restoring balance.” Caroline Myss

Dopamine agonists (DA): Dopamine agonists are ‘mimics’ of dopamine that pass through the blood brain barrier to interact with target dopamine receptors. Symptomatic treatment of Parkinson’s remains dopamine replacement, including the DA’s.  Dopamine agonists are frequently the first line of choice for therapy for the just diagnosed Parkinson’s patient. Dopamine agonists do help control motor symptoms in Parkinson’s although there can be significant side-effects (see Table below). Also below is a Table describing DA’s. The DA side effects can become intolerable for some people-with-Parkinson’s, and the decision to taper or withdraw the DA is made. Or maybe you’re a candidate for deep-brain stimulation (DBS) surgery and to calibrate the device you’ll be asked to stop your Parkinson’s medication for a short period of time.

18.01.03.DA+DAWS

18.01.03.DA+DAWS

“I enjoy convalescence. It is the part that makes the illness worth while.” George Bernard Shaw

First report of dopamine agonist withdrawal syndrome (DAWS): Dopamine agonist withdrawal syndrome (DAWS) was first described in 2010 by Rabinak and Nirenberg on five of their patients with non-motor impulse control behavioral disorders (ICD) caused by the DA; thus, they were tapered. Two patients were further described in this publication. The first patient was a 67-year-old woman with a six year history of Parkinson’s, and she had been taking various drugs including a DA. She had developed a difficult ICD, and they elected to taper the DA; unexpectedly, she then had severe anxiety and dysphoria. They tried an increase in carbidopa/levodopa and they used other therapy for cognitive behavior control; to no benefit to the patient. They changed her back to the original DA dose and she had a rapid and dramatic improvement in all of her symptoms. This patient continues to use the DA and remains with the difficult ICD.

Patient #2 was a 61-year-old woman with a six-year history of Parkinson’s and likewise an ICD prompted by the DA; she began a DA tapering with increased carbidopa/levodopa medication.  During the DA taper, she developed depression and severe anxiety and became agitated; she also had fatigue and insomnia.  As with Patient #1, adding back the DA improved all of her non-motor symptoms. It took several years for her to successfully reduce her DA doseage. The figure below visually highlights some of the key symptoms of DAWS.

18.01.04.DAWS_faces

What both cases shared were prominent psychiatric symptoms, poor response to both additional carbidopa/levodopa (to take the place of the DA) and psychiatric medication; however, both had rapid improvement in their ‘new symptoms’ when placed back on the DA. The majority of DAWS symptoms are presented in the the Table below.Document5“The secret of learning to be sick is this: Illness doesn’t make you less of what you were. You are still you.” Tony Snow

Risk-factors and prevalence of DAWS: Since the original study in 2010, there have been several follow-up studies on DAWS. Some of the studies speculated that a large DA dose in the presence of pre-existing ICD are the most important risk factors for DAWS. The ‘number’ talked about frequently is something called the ‘levodopa equivalent daily dose’ (LEDD) of the dopamine agonist, where it has been suggested that >150 mg was linked to an increased risk of DAWS. Use this on-line program to calculate your LEDD (click here).  Here is an LEDD example: someone taking 14 mg ropinirole/day (with the online algorithm), the LEDD would be 280 mg daily.  What? OK, so what did you say?  This means if you wanted to replace the 14 mg/day ropinirole with carbidopa/levodopa you would need about 300 mg per day of levodopa based on this calculation.  I refer you to do the papers cited at the end of the blog post for more details about LEDD. What is interesting is several of the studies have compared the taper versus total withdrawal of the DA; it does not seem to alter the risk of DAWS.  Good news is if you’re not having any detrimental side effects from the DA, just continue on and you’re good to go. The bad news is if you are having some side effects and you want to try and eliminate them by tapering down need to carefully consult with your neurologist and work up a feasible plan.  Please remember I’m a biochemist, not a physician, and I just am interpreting data from publications.

The prevalence of DAWS has been reported to be between 15 and 19% in patients with Parkinson’s; it seems to be consistently about one-in-five.  As mentioned previously, there appears to be no difference in relative risk of DAWS comparing patients that discontinue DA completely or those that reduce the DA by taper. Based on the percentage mentioned above, this says ~4 out of 5 people-with-Parkinson’s can DA taper without any problems.

“It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body.” Marcel Proust

DA mechanism of action to cause DAWS:  To recap, DAWS occurs in a subset of patients with Parkinson’s that have had difficulties managing the side effects of a DA, and the decision has been made to remove that DA from the patient’s regimen.  The simplest notion is that you would then replace the DA with an increased dose of carbidopa/levodopa (using the LEDD); however, this is Parkinson’s and this is the brain and it’s just not going to be that easy. The diagram below summarizes a very simplistic view of dopamine and DA’s in their interactions with motor and reward pathways.  There is no doubt that in treating Parkinson’s, the replacement of dopamine is crucial for many different physiological functions in the human body. Dopamine agonists and dopamine share similar binding properties to dopamine receptors. They are very important in improving motor symptoms (through the nigrostriatal pathway) but there is also some potential detrimental crossover to the reward center (through the mesocorticolimbic pathway).  It is this minor pathway that is linked to the increased risk of ICD in some patients being treated with a DA. It is not clear, however from the data published so far that there is a difference in this 20% of the patient population in their mesocorticolimbic circuitry system with the DA in comparison to the other 80% of the population.  In summary, what causes DAWS during DA tapering is not well understood.18.01.07.Dopamine_Motor_Reward“Medicine is intention. Those who are proficient at using intention are good doctors.” Sun Simiao

Treatment/management of DAWS during DA taper:  DAWS is a relatively recent phenomena related to DA withdrawal.  Patients with (i) a predisposition to ICD and (ii) a larger dose of DA are apparently at increased risk of developing DAWS. There is no well-delineated treatment plan that the neurologist can follow; best recommendation (from the papers cited below) is the patient should be tapered at a very slow dose reduction over a long period of time, and see what happens. Clearly, it is crucial that the patient and the neurologist carefully evaluate signs of ICD and DAWS at every visit, especially for patients at high risk.

“The treatments themselves do not ‘cure’ the condition, they simply restore the body’s self-healing ability.” Leon Chaitow

 Summary: As someone with Parkinson’s, I’ve done a lot of reading about treatment strategies (what’s good and what’s not so good). For someone my age there would almost always be a recommendation to begin the DA (the so-called sparing one of levodopa until it’s absolutely needed) and then as symptoms progressed, you would switch over and combine the DA with carbodipa/levodopa.  Had I read the opinions of Dr. Ahlskog in the beginning, I might have opted to start with carbidopa/levodopa without the DA (Ahlskog JE. Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease. Mayo Clinic Proceedings. 2011;86(12):1211-6. doi: https://doi.org/10.4065/mcp.2011.0443). Biochemically, DAWS is an interesting problem but there needs to be additional studies to delineate the mechanism of action. Finally  DAWS clinically is worrisome and definitely not well-understood; and likely, the scope of DAWS is under-recognized.

Key References:

  1. Rabinak CA, Nirenberg MJ. Dopamine agonist withdrawal syndrome in Parkinson disease. Arch Neurol. 2010;67(1):58-63. doi: 10.1001/archneurol.2009.294. PubMed PMID: 20065130.
  2. Nirenberg MJ. Dopamine agonist withdrawal syndrome and non-motor symptoms after Parkinson’s disease surgery. Brain. 2010;133(11):e155; author reply e6. doi: 10.1093/brain/awq165. PubMed PMID: 20659959.
  3. Cunnington AL, White L, Hood K. Identification of possible risk factors for the development of dopamine agonist withdrawal syndrome in Parkinson’s disease. Parkinsonism Relat Disord. 2012;18(9):1051-2. doi: 10.1016/j.parkreldis.2012.05.012. PubMed PMID: 22677468.
  4. Pondal M, Marras C, Miyasaki J, Moro E, Armstrong MJ, Strafella AP, Shah BB, Fox S, Prashanth LK, Phielipp N, Lang AE. Clinical features of dopamine agonist withdrawal syndrome in a movement disorders clinic. J Neurol Neurosurg Psychiatry. 2013;84(2):130-5. doi: 10.1136/jnnp-2012-302684. PubMed PMID: 22933817.
  5. Edwards MJ. Dopamine agonist withdrawal syndrome (DAWS): perils of flicking the dopamine ‘switch’. J Neurol Neurosurg Psychiatry. 2013;84(2):120. doi: 10.1136/jnnp-2012-303570. PubMed PMID: 22993451.
  6. Nirenberg MJ. Dopamine agonist withdrawal syndrome: implications for patient care. Drugs Aging. 2013;30(8):587-92. doi: 10.1007/s40266-013-0090-z. PubMed PMID: 23686524.1.
  7. Nirenberg MJ. Dopamine agonist withdrawal syndrome: implications for patient care. Drugs Aging. 2013;30(8):587-92. doi: 10.1007/s40266-013-0090-z. PubMed PMID: 23686524.
  8. Solla P, Fasano A, Cannas A, Mulas CS, Marrosu MG, Lang AE, Marrosu F. Dopamine agonist withdrawal syndrome (DAWS) symptoms in Parkinson’s disease patients treated with levodopa-carbidopa intestinal gel infusion. Parkinsonism Relat Disord. 2015;21(8):968-71. doi: 10.1016/j.parkreldis.2015.05.018. PubMed PMID: 26071817.
  9. Huynh NT, Sid-Otmane L, Panisset M, Huot P. A Man With Persistent Dopamine Agonist Withdrawal Syndrome After 7 Years Being Off Dopamine Agonists. Can J Neurol Sci. 2016;43(6):859-60. doi: 10.1017/cjn.2015.389. PubMed PMID: 26842385.
  10. Patel S, Garcia X, Mohammad ME, Yu XX, Vlastaris K, O’Donnell K, Sutton K, Fernandez HH. Dopamine agonist withdrawal syndrome (DAWS) in a tertiary Parkinson disease treatment center. J Neurol Sci. 2017;379:308-11. doi: 10.1016/j.jns.2017.06.022. PubMed PMID: 28716269.
  11. Yu XX, Fernandez HH. Dopamine agonist withdrawal syndrome: A comprehensive review. J Neurol Sci. 2017;374:53-5. doi: 10.1016/j.jns.2016.12.070. PubMed PMID: 28104232.
  12. Solla P, Fasano A, Cannas A, Marrosu F. Dopamine agonist withdrawal syndrome in Parkinson’s disease. J Neurol Sci. 2017;382:47-8. doi: 10.1016/j.jns.2017.08.3263. PubMed PMID: 29111017.

“Life always gives us exactly the teacher we need at every moment. This includes every mosquito, every misfortune, every red light, every traffic jam, every obnoxious supervisor (or employee), every illness, every loss, every moment of joy or depression, every addiction, every piece of garbage, every breath. Every moment is the guru.” Joko Beck

Cover photo credit: f.fwallpapers.com/images/sun-peeking-through-snow-covered-trees.jpg

Agitation- img.aws.livestrongcdn.com/ls-article-image-400/cme/cme_public_images/www_livestrong_com/photos.demandstudios.com/49/85/fotolia_4199215_XS.jpg
Depression- http://www.scientificamerican.com/sciam/cache/file/FCD288AE-5C2E-49F2-85858FA255A8034B_source.jpg
Fatigued- www.belmarrahealth.com/wp-content/uploads/2017/03/fatigue-in-the-elderly-300×200.jpg
Panic attack- lifetimewoman.com/wp-content/uploads/2016/09/panica-1.jpg

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

7 Tips and Healthy Habits for Working with Parkinson’s

“Nothing will work unless you do.” Maya Angelou

“The best preparation for good work tomorrow is to do good work today.” Elbert Hubbard

Précis: Over the past eight weeks, some loyal readers and several friends have asked me: “Is everything  okay?”; “Has my health taken a downturn?”; “Have you stopped writing your blog?”; “I have been worried about you because it has been well over six weeks since your last blog post.”  I responded to each that I was well and doing fine, my health has been steady. However, the fall semester (early August-early December) for me is over-flowing with my job/work (teaching, administrative and still trying to maintain some research) and other commitments (service) [let alone trying to find time to exercise and other personal time], which leads to very little spare time to even think about composing a blog post. I apologized to everyone who contacted me; and I do stand in awe of all of the bloggers I follow who are able to both write and work full-time at the same time.  Thus, the topic for the current post is about having a career/full-time job in the presence of Parkinson’s disease.

“The world is full of willing people; some willing to work, the rest willing to let them.” Robert Frost

There is an old saying that ‘there are people who work to live’ and that ‘there are people who live to work’: One of these phrases likely describes your attitude (or opinion) about your job/career.  One phrase is not more correct than the other phrase. Likely, one phrase will matter in which career path you follow and it will contribute to your overall satisfaction in work-matters.  Thus, an honest assessment will help you identify which of these beliefs you most are aligned with as your life and career unfolds.  Your happiness matters.

I have been in an academic medicine setting for the past 35 years and I am more closely linked with the phrase ‘live to work’.  I have never regretted this career choice.  It has taken me a long time to understand the how and the why of my academic career successes and advances mixed with the typical setbacks/compromises.  A dear friend recently told me she could not imagine me doing anything else career-wise, it’s a perfect match. Currently, I am still able to work 6 days/week with the following goals: educating future healthcare providers, serving on several committees, and planning that next experiment to get one more research proposal submitted/funded.  Then Parkinson’s happened.

“The only place success comes before work is in the dictionary.” Vince Lombardi

The equilibrium between life and career: The “life-work equation” is now of primary importance to me.  My version can be summarized as given below (likely, you’d have different/additional variables in your own ‘personal’ life-work equation):

Health (exercise and living with Parkinson’s) + Living (importance of loved ones, family, friends, colleagues) + Career (teaching and research) = Life.

The spectrum of balancing life-work ranges from happy/positive/fulfilling to unhappy/unfulfilling/find something else to do/not enough time to manage my Parkinson’s.  Ultimately, at 64 years of age, and with Parkinson’s, I need to consider adding another possibility (or dimension) to my life-career equation, namely retirement.  Well, at least, the thought has been planted.

“The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle.”  Steve Jobs

7 tips and healthy habits for working with Parkinson’s: Clearly, understanding and balancing your career is an important aspect to your life (something that has not always been obvious to me).  Taking care of your health and career, especially in the presence of Parkinson’s is of paramount importance and will contribute to your wellness and happiness.  These are straightforward suggestions for you to consider while working with Parkinson’s; hopefully, this list will serve as a reminder about their importance. Also shown below are several photos of me at work and at play. Here is a 1-page summary of the “7 Tips and Healthy Habits for Working with Parkinson’s” (Click here to download file).

Slide1

17.12.26b_7 Habits For Working with PD

[1] Executive Function. Executive function describes the group of mental skills that help you get things done. The frontal lobe of the brain controls your ability to execute these skills.  There are three key features to executive function: (1) working memory allows you to keep information in your mind and use it appropriately; (2) cognitive flexibility is being able to think about something in more than one way; and (3) inhibitory control  is being able to ignore something and resist temptation. Executive function allows you to manage time, pay attention, plan and organize, remember details and the ability to multitask.  Many with PD show a slow erosion of executive function. You need to recognize this aspect of your mind is partly responsible for your ability to work well (or not); therefore, keep going as best you can. 

executivefunctioncoaching3“The essence of strategy is choosing what not to do.“ Michael Porter

[2] Be willing to discuss your disease.  You have made the decision to inform others about your Parkinson’s and tell your friends and colleagues. Good for you!  In my case, I spent almost a year trying to avoid telling people about my Parkinson’s. Instead I just informed people who worked with me, my family and close friends. In hindsight, living openly with Parkinson’s is so much easier because everyone has been very supportive, receptive and very caring. To most people, Parkinson’s is a mystery. And it gets more difficult, not easier, when your colleagues (family and friends) acknowledge that they know about Michael J. Fox, Robin Williams and Mohammad Ali.  Educating your colleagues about you, your issues, your disease gives you so much credibility and bolsters respect among your peers.

This above all; to thine own self be true.” William Shakespeare

[3] Stay positive and go forward. At times, you live negatively and go backwards. Focus on staying positive and practice moving forward; your co-workers will appreciate the effort. A constant theme of this blog has been to try to remain positive and to live in a forward manner and not look backwards. We can reflect on today and you can plan for tomorrow all you can do is relive yesterday. It’s much better to stay positive and go forward.

List of positive words:

list-of-positive-words

Always turn a negative situation into a positive situation.” Michael Jordan

[4] Exercise, sleep and eat well. In the absence of regular exercise, adequate sleep and a healthy diet you’ll be unable to work effectively.  Just do all three each day; everyone around you at work will care for you even more, why?  Because you are now positively fueling your entire body-mind. Go here for a few additional blog posts on these topics: exercise (9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s; Golf And Parkinson’s: A Game For Life; Meditation, Yoga, and Exercise in Parkinson’s); sleep (Sleep Disturbances in Parkinson’s and the Eagles Best Song Lyrics; Sleep, Relaxation, And Traveling; 7 Healthy Habits For Your Brain); and nutrition (Diet and Dementia (Cognitive Decline) in the Aging; B Vitamins (Folate, B6, B12) Reduce Homocysteine Levels Produced by Carbidopa/Levodopa Therapy).

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A lifestyle is what you pay for; a life is what pays you.” Thomas Leonard

[5] Stress reduction and mindfulness. Cortisol is produced as a by-product from stress.  Mindfulness reduces stress to reduce cortisol levels, a winning scenario for you at work and your brain will be healthier.  Take time during the work-day to practice mindfulness; even 5’ daily improves your body-heart-mind-soul axis.

stressresponse

Men for the sake of getting a living forget to live.” Margaret Fuller

[6] Gadgets can make a big difference.  Technology today is simply amazing; take advantage of it to keep going in your job. For example, if you type a lot on a keyboard/computer, use dictation with Dragon®. If your posture is poor from sitting all day at a desk, get the BackJoy® and help better support your back.   I  definitely have  a tendency to sit too long when I’m focusing on work and writing; one way I deal with it is to have Alexa (my Amazon Echo Dot®) set a timer for every 20 minutes to get me up and stretching.  I also have my Fitbit Charge 2® exercise watch set in silent alarm mode to vibrate every five and six hours, respectively, to remind me to take my medication. Just a few examples of many.

Technology feeds on itself. Technology makes more technology possible.” Alvin Toffle

[7] Have a career plan with accommodations. Let’s  be realistic and accept the notion that our PD symptoms may eventually interfere with our work.  Be self-aware of these small physical/mental changes; be prepared (proactive) and have a Plan B or a Plan C ready to implement. Consider that stopping work and being diagnosed with Parkinson’s are both typically at 60 something years of age, which makes the intersection of job and PD diagnosis/progression a very important “X marks the spot”.

I never think of the future – it comes soon enough.” Albert Einstein

Working while with Parkinson’s:  I have had Parkinson’s for the past ~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.   For the past two years, I’ve been contemplating a couple of different plans once I stop working full-time. They consist of phasing-out retirement, exercise, PD outreach, teaching, and a few other ‘opportunities’ that I’m not yet ready to describe because they are still being developed. My future will likely be as busy as I am now but not necessarily all at the same place or at the same time.  When the full-time clock stops ticking it will be because either “it’s time, I’ve done enough” or my health has interfered with my schedule. My plan is still a couple of years away from being implemented. Like everyone with Parkinson’s, I’m acutely cognizant of my disorder. In the meantime, I have much left to accomplish with my education-science-service-outreach.

“Thunder is good, thunder is impressive; but it is lightning that does the work.” Mark Twain

“Beingness, doingness and havingness are like a triangle where each side supports the others. They are not in conflict with each other. They all exist simultaneously. Often people attempt to live their lives backwards: They try to have more things, or more money, in order to do more of what they want, so that they will be happier. The way it actually works is the reverse. You must first be who you really are, then do what you need to do, in order to have what you want.” Shakti Gawain

Cover photo credit: xinature.com/wp-content/uploads/2016/10/winter-trees-sun-lake-ice-dusk-sunshine-nature-water-snow-scene-landscape-sunrise-dawn-desktop-scenes.jpg

Executive function image: goosecreekconsulting.com/picts/executivefunctioncoaching.jpg

Stress response image: themeditatingman.com/wp-content/uploads/2016/08/stressresponse.jpg

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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