Category Archives: Happiness

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).

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[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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Driving Under the Influence of Parkinson’s

“Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?” George Carlin

“If all the cars in the United States were placed end to end, it would probably be Labor Day Weekend.” Doug Larson

The Dilemma: At some age in our life, maybe, just maybe, we could lose the privilege of driving our car/truck.  If you are living with Parkinson’s, depending on the individual, losing the legal right to drive your motor vehicle might/could happen at an even earlier age.  A discussion of driving under the influence of Parkinson’s is presented here.

“I love driving cars, looking at them, cleaning and washing and shining them. I clean ’em inside and outside. I’m very touchy about cars. I don’t want anybody leaning on them or closing the door too hard, know what I mean?” Scott Baio

The Michon model of normal driving behavior:  In 1985, Michon proposed that drivers need to conduct problem-solving while driving; he divided it  into three levels of skill and control. The model includes strategic (planning), tactical (maneuvering), and operational (control) levels.   When you think about it driving really is a complicated task.   The strategic level is basically the general route and planning needed to successfully navigate the motor vehicle.  The tactical and control levels involve the individual driving circumstances and how one responds and our responsiveness to the action of driving.   And of course, it’s quite obvious, that unsafe driving is operating a motor vehicle in an unsafe manner regardless of your health status. Driving safely is important for the individual as well as for the people around you; thus, it is a serious task to evaluate someone’s competency to drive a motor vehicle. Shown below is a schematic drawing of the Michon model of normal driving behavior.

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“The one thing that unites all human beings, regardless of age, gender, religion, economic status, or ethnic background, is that, deep down inside, we all believe that we are above-average drivers.” Dave Barry

Decision-making while driving:   Below are some traffic signs that we might encounter in our usual driving pattern depending on where we live. When you think about decision-making you’re in your lane you’re driving down the road and you see signs like this, then what?  You can see how it takes all three levels of driving competency to navigate successfully while driving a motor vehicle in a complex maneuver.  Now add the complications of someone with Parkinson’s, you may need to re-think the entire situation. What this says is that when you’re driving a motor vehicle you’re trying to integrate many levels of sensory, motor and cortical function to the process. In Parkinson’s, we may have some sort of motor skill/task impairment, potentially mixed with a minor cognitive disorder, and further clouded by traditional drug therapy. Who makes the decision for the patient with Parkinson’s about being able to continue to drive?  Not an easy answer.

“Some beautiful paths can’t be discovered without getting lost.” Erol Ozan

 Possible problems that could occur while driving with Parkinson’s: The control or operational level of driving a car can be influenced by motor defects experienced by many with Parkinson’s, including rigidity, tremor, bradykinesia and dyskinesia. Futhermore, non-motor deficits could impair both route planning, strategic and tactical levels, and these would include cognitive decline, neuropsychiatric symptoms and/or visual impairment. And on top of that in the elderly population, many people with Parkinson’s have additional co-morbidity that could also contribute to diminish our ability to drive a motor vehicle. Thinking about just one aspect, slowness in cognitive function, the inability to make a decision quickly could lead to poor performance time and might affect driving in someone with Parkinson’s. Alternatively, you may have none of these problems and will be driving for many more years. But as we all start to exhibit signs and symptoms of motor and non-motor deficits, this will eventually become an important issue for each of us to deal with at some point in time.

“Always focus on the front windshield and not the review mirror.” Colin Powell

 What are some criteria for determining our fitness to drive a motor vehicle when you have Parkinson’s? In a very nice review, Jitkritsadakul and Bhidayasiri suggest there are five different red flags that should tell our neurologist that we may have an impairment that should limit our driving of motor vehicles. First, these include our clinical history, which would be a history of accidents, sleeping attacks while driving and combined with the daily dose amount of levodopa. Next would be a questionnaire to determine our level of daily sleepiness. Third, a motor assessment skills test. Fourth, a cognitive assessment. And fifth would be a visual assessment.  Look above at the Michon driving schematic and think about the three levels of skill required for driving and substitute someone with Parkinson’s and how that could diminish one or more of the skill sets over time.  What this says to me is that through a combination of family and friends and carepartner,  along with the advice of our neurologist, one should be able to make a critical assessment of whether or not we should continue to drive.

“Driving your car through deep pools of flood water is a great way of making your car unreliable. Smart people turn around and avoid it.” Steven Magee

A love of motor vehicles (a personal expression):  I grew up loving automobiles; and living on Air Force Bases, I saw many different types of sports cars  (e.g., Corvette, Jaguar, Triumph, Porsche, Shelby Mustang, Ferrari- you just had to believe that Air Force pilots live for speed in the air and their cars showed it on the ground). I can remember in 1964 (I was 11 years old) going to the Ford dealership with my dad to see the very first Ford Mustang cars; thinking how beautiful they were and remembering my dad’s comment that was a lot of car for $2,400.   I still have vivid memories of riding with my dad (yes, he was a former pilot) in his ~1962 white Porsche. I can still remember in 1971 getting my first car, a 1968 Chevrolet Camaro (red interior and red exterior) with standard transmission (three on the floor) and powered by a 327 cubic inch V-8 engine. [Please note, the pictures below are representative images because I could not find any actual old photos of these cars]

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Over the decades, I can recall the weekly car-washing sessions, typically on Saturday mornings. With the exception of one car in the early 1980’s, I have loved and truly enjoyed the automobiles I’ve driven.  Like many people I’ve named all my cars; my two current automobiles are named Raven and Portia. I still enjoy driving a standard shift car using the clutch that requires both cognitive function and motor skills to navigate the automobile. I have always thought “It’s going to be a cold day in hell before they take my car away”; however, it’s a reality in the future I now face with Parkinson’s. In fact one of the very first people I ever told about my Parkinson’s several years ago, the very first question she asked me was “Are you still able to drive?”  In summary, driving under the influence of Parkinson’s is something we all will need to consider with time; I wish you well with your driving experiences.

“Driving a car provides a person with a rush of dopamine in the brain, which hormonal induced salience spurs modalities of creative and critical thinking regarding philosophical concepts such as truth, logical necessity, possibility, impossibility, chance, and contingency.” Kilroy J. Oldster

https://www.ncbi.nlm.nih.gov/pubmed/27729986

1.    Jitkritsadakul O, Bhidayasiri R. Physicians’ role in the determination of fitness to drive in patients with Parkinson’s disease: systematic review of the assessment tools and a call for national guidelines. Journal of Clinical Movement Disorders. 2016;3(1):14. doi: 10.1186/s40734-016-0043-x.

Cover photo credit: s-media-cache-ak0.pinimg.com/564x/22/d1/75/22d175ac53a0a5dbb04e77ae52a49c52.jpg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“The blood is the life!” Bram Stoker

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

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

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

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

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

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