Category Archives: Education and Support

Effect of Forgiveness on Health

“When you forgive, you in no way change the past – but you sure do change the future.”  Bernard Meltzer

“The first step in forgiveness is the willingness to forgive.” Marianne Williamson

Précis: Recently had a friend go through a difficult break-up from a marriage. The notion of getting past the failed relationship, achieving forgiveness, and moving on without causing illness was of paramount importance. The implications of forgiveness/unforgiveness as it relates to health-illness crossed my mind. It started with assembling the quotes in this post. Next, I did a Google Scholar search for “forgiveness and health” and discovered a whole new area of psychology-science-medicine (well, it was new to me). Most of us would agree that forgiving yourself promotes wellness; whereas remaining unforgiven could disrupt your mental and possibly even your physical health.  This post reviews forgiveness and its positive impact on our health.

“Forgiveness is really a gift to yourself – have the compassion to forgive others, and the courage to forgive yourself.” Mary Anne Radmach

Forgiveness and Health: The Oxford dictionary defines ‘forgive’ as to stop feeling angry and resentful towards (someone) for an offense, flaw, or mistake.  Positive psychology is the scientific study of the strengths that enable individuals and communities to thrive. Forgiveness is a big part of positive psychology regarding both physical and mental well-being.   Over the past 15 years, researchers have focused on 2 primary hypotheses: (1) forgiveness has important connections to physical health; and (2) this relationship is guided by an association between lack of forgiveness and anger.  Evidently, there is consensus in the field that these two primary processes form the basis of forgiveness: (i) letting go of one’s right to resentment and negative judgment; and (ii) fostering undeserved compassion and generosity toward the perpetrator.  The first process implies a person would reduce their negative emotions (i.e., anger and revenge); while  the second process involves increasing positive feelings and might even include reconciliation. Collectively, there is growing scientific evidence that links the positivity of forgiveness and health.

“He who is devoid of the power to forgive is devoid of the power to love.” Martin Luther King, Jr.

“The more you know yourself, the more you forgive yourself.” Confucius

Forgiveness vs. Unforgiveness: It is probably apparent (to you) that forgiveness is generally associated with improved mental and physical health, as opposed to someone unable/unwilling to forgive.  Modeling the relationship between forgiveness and health, based on the hypothesis that forgiveness reduces hostility (and this would be considered healthier), 6 paths linking forgiveness and health have been described: (i) decrease in chronic blaming and anger; (ii) reduction in chronic hyper-arousal [“a state of increased psychological and physiological tension marked by such effects as reduced pain tolerance, anxiety, exaggeration of startle responses, insomnia, fatigue and accentuation of personality traits.”]; (iii) optimistic thinking; (iv) self-efficacy to take health-related actions; (v) social support; and (vi) transcendent consciousness (“state achieved through the practice of transcendental meditation in which the individual’s mind transcends all mental activity to experience the simplest form of awareness“).

What does this mean? The majority of studies on forgiveness indicate a reciprocal relationship to hostility, anger, anxiety and depression.  Forgiveness may directly alter sympathetic reactivity, which is often referred to as the “fight-or-flight” response. These responses include increases in heart rate, blood pressure, cardiac contractility, and cortisol.  This implies that unforgiveness could promote an acute, stress-induced reactivity that could be associated with general health problems.  However, it is much more complicated than this simplistic flow of events: anger is a component of unforgiveness; anger is a health risk; therefore, unforgiveness is a health risk.  This is really interesting reading but way beyond my training as a protein biochemist (If interested, look over the references listed below)

Forgiveness and Mental Health: Let’s take a different angle by looking at mental health. We begin with unforgiveness as being associated with stress from an ‘interpersonal’ offense and stress is associated with diminished mental health. Furthermore, unforgiveness due to an ‘intrapersonal’ wrongdoing may lead to shame, regret and guilt, which could also negatively affect mental health. The positive impact of forgiveness may help correct the downturn in mental health that resulted from either interpersonal or intrapersonal stress.  In many instances, mental health is linked to physical health. This suggests that practicing forgiveness would positively influence mental health and could therein bolster physical health.

To summarize the ability of forgiveness to bolster mental health, I have re-drawn the figure from Toussaint and Webb  (2005) as a 4-piece puzzle. It begins with the ‘direct effect’ of forgiveness as told through unforgiveness with emotions of resentment, bitterness, hatred, residual hostility, and fear. The negative emotions of unforgiveness could contribute significantly to mental health problems.  By contrast, the emotion of forgiveness is positive and strong and love-based that could improve mental health. The ‘indirect effect’ of forgiveness through social support, interpersonal behavior and health behavior are all positively-linked to good mental health. The ‘developmental stage’ describes the recognition of the problem, need for an alternative solution, and ultimately the effect of forgiveness augments mental health.  The final piece to the puzzle is the ‘attributional process’, which suggests that being able to forgive bolsters personal control of one’s life, which is perceived to be positive.  By contrast, unforgiveness blocks this life-controlling process by consumptive negative emotions made worse in the individual through rumination.  Due to my own internal word limit and time-period to read/understand the topic, I have not included the religious or spiritual basis of the forgiveness of God, feeling God’s forgiveness, and seeking God’s forgiveness in the narrative of this post.  For many people, these would be integral components to the discussion here on forgiveness and its overall impact on both mental and physical health.

Forgiveness.2

“I don’t know if I continue, even today, always liking myself. But what I learned to do many years ago was to forgive myself. It is very important for every human being to forgive herself or himself because if you live, you will make mistakes- it is inevitable. But once you do and you see the mistake, then you forgive yourself and say, ‘Well, if I’d known better I’d have done better,’ that’s all.” Maya Angelou

9 Steps to Forgiveness (Fred Luskin, LearningToForgive.com): Dr. Luskin is a noted-researcher in the field of forgiveness. His belief is that by practicing forgiveness, your anger, hurt, depression and stress will all be reduced and it will increase feelings of hope, compassion and self confidence. Furthermore, he believes that practicing forgiveness contributes to healthy relationships and to improved physical health; here are the 9 steps to forgiveness:

  1. Know exactly how you feel about what happened and be able to articulate what about the situation is not OK. Then, tell a trusted couple of people about your experience.
  2. Make a commitment to yourself to do what you have to do to feel better. Forgiveness is for you and not for anyone else.
  3. Forgiveness does not necessarily mean reconciliation with the person that hurt you, or condoning of their action. What you are after is to find peace. Forgiveness can be defined as the “peace and understanding that come from blaming that which has hurt you less, taking the life experience less personally, and changing your grievance story.”
  4. Get the right perspective on what is happening. Recognize that your primary distress is coming from the hurt feelings, thoughts and physical upset you are suffering now, not what offended you or hurt you two minutes – or ten years – ago. Forgiveness helps to heal those hurt feelings.
  5. At the moment you feel upset practice a simple stress management technique to soothe your body’s flight or fight response.
  6. Give up expecting things from other people, or your life, that they do not choose to give you. Recognize the “unenforceable rules” you have for your health or how you or other people must behave. Remind yourself that you can hope for health, love, peace and prosperity and work hard to get them.
  7. Put your energy into looking for another way to get your positive goals met than through the experience that has hurt you. Instead of mentally replaying your hurt seek out new ways to get what you want.
  8. Remember that a life well lived is your best revenge. Instead of focusing on your wounded feelings, and thereby giving the person who caused you pain power over you, learn to look for the love, beauty and kindness around you. Forgiveness is about personal power.
  9. Amend your grievance story to remind you of the heroic choice to forgive.

“Forgiving does not erase the bitter past. A healed memory is not a deleted memory. Instead, forgiving what we cannot forget creates a new way to remember. We change the memory of our past into a hope for our future.” Lewis B. Smedes

Forgiveness in the Presence of Parkinson’s:  Receiving a diagnosis of Parkinson’s, a lifelong chronic progressive neurodegenerative disorder is a real shock.  The diagnosis comes with a variety of emotions. After a while, acceptance takes over; no, not your identify, just ok, I’ve got Parkinson’s, live through it, make the most of this experience. Eventually I had to put forgiveness into part of this living-life-equation. There were two self-involved events where I might have contributed to the development of my own disease.  The first was as a young boy in the summertime riding my bicycle behind the DDT trucks spraying for mosquitoes on our Air Force bases [Dichlorodiphenyltrichloroethane (DDT) is a colorless, tasteless, and almost odorless crystalline organochlorine known for its insecticidal properties]. DDT is one of the known chemical inducers of Parkinson’s. Second, in graduate school before OSHA took over regulating lab safety, I routinely used many different noxious compounds for the benefit of science and for the completion of my PhD. Both events caused me to pause and ponder; however, I decided to forgive myself. I truly believe had I remained unforgiving, I would have paved a path of ill health.

This whole process of dealing with the emotion from diagnosis to acceptance (and forgiveness) of Parkinson’s reminds me of the opening verse of “We Are The Champions” by Queen: “I paid my dues/ time after time./ I’ve done my sentence/ but committed no crime./ And bad mistakes-/ I’ve made a few./ I’ve had my share of sand kicked in my face/ but I’ve come through./  (And I need to go on and on, and on, and on)

The vast majority of people with Parkinson’s are 60-years of age or older (although there is a group of early-age-onset). Interestingly, in a recent study with an elderly population, forgiveness showed positive and significant association with mental and physical health.

“You cannot travel back in time to fix your mistakes, but you can learn from them and forgive yourself for not knowing better.” Leon Brown

“Accept the past as past, without denying it or discarding it.” Mitch Albom

Forgive Ourselves: Dr. Elaine in her post “The-healing-power-of-forgiveness” nicely summarized self-forgiveness: “We tend to believe that forgiveness supports the transgression that has been committed against us. But forgiveness is not an endorsement of wrongdoing; rather, it’s an act of releasing the pain and hurt it caused through love, the root of forgiveness—and it is not love of the other but of the self. We must forgive ourselves as well as others in order to be whole and healed.”

Effect of Forgiveness on Health: 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.  Thus, dealing with the axis defined by forgiveness/unforgiveness in the matter of health (both mental and physical) clearly could complicate our health.  Truly we need to add forgiveness as a filter to our life-lens; the benefits from this addition should favor our health in the long-run.

“If we all hold on to the mistake, we can’t see our own glory in the mirror because we have the mistake between our faces and the mirror; we can’t see what we’re capable of being. You can ask forgiveness of others, but in the end the real forgiveness is in one’s own self.” Maya Angelou

Cover photo credit: https://orig05.deviantart.net/0a42/f/2015/095/1/6/painted_wallpaper___fog_on_lake_by_dasflon-d8oiudk

Useful References:

Lawler KA, Younger JW, Piferi RL, Jobe RL, Edmondson KA, Jones WH. The Unique Effects of Forgiveness on Health: An Exploration of Pathways. Journal of Behavioral Medicine. 2005;28(2):157-67. doi: 10.1007/s10865-005-3665-2.

Akhtar, S., Dolan, A., & Barlow, J. (2017). Understanding the Relationship Between State Forgiveness and Psychological Wellbeing: A Qualitative Study. Journal of Religion and Health, 56(2), 450–463. http://doi.org.libproxy.lib.unc.edu/10.1007/s10943-016-0188-9

Lawler-Row KA, Karremans JC, Scott C, Edlis-Matityahou M, Edwards L. Forgiveness, physiological reactivity and health: The role of anger. International Journal of Psychophysiology. 2008;68(1):51-8. doi: https://doi.org/10.1016/j.ijpsycho.2008.01.001.

Rey L, Extremera N. Forgiveness and health-related quality of life in older people: Adaptive cognitive emotion regulation strategies as mediators. Journal of Health Psychology. 2016;21(12):2944-54. doi: 10.1177/1359105315589393. PubMed PMID: 26113528.

Toussaint, L., J.R. Webb.  Theoretical and empirical connections between forgiveness, mental health, and well-being E.L. Worthington Jr (Ed.), Handbook of forgiveness, Brunner–Routledge, New York (2005), pp. 207-226

 

 

 

 

B Vitamins (Folate, B6, B12) Reduce Homocysteine Levels Produced by Carbidopa/Levodopa Therapy

“The excitement of vitamins, nutrition and metabolism permeated the environment.” Paul D. Boyer

“A substance that makes you ill if you don’t eat it.” Albert Szent-Gyorgy

Introduction: Claire McLean, an amazing-PT who is vital to my life managing my Parkinson’s, posted a very interesting article about the generation of homocysteine from the metabolism of levodopa to dopamine in the brain. Here is the article:

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This was all a very new concept to me. And as an ‘old-time’ biochemist by training, it led me down a trail of wonderful biochemical pathways and definitely a story worth retelling  for anyone taking carbidopa/levodopa.  Excessive generation of homocysteine leads to something called hyper-homocysteinuria, which is very detrimental to the cardiovascular system and even the neurological system.  Over time this could lead to a depletion of several B vitamins, which themselves would have biochemical consequences. This post is about the supplementation with a complex of B vitamins (including a cautionary note) during long-term therapy with carbidopa/levodopa.

“There are living systems; there is no ‘living matter’.” Jacques Monod

A reminder about Parkinson’s, dopamine and carbidopa/levodopa:  Someone with Parkinson’s  has reduced  synthesis of dopamine, an essential neurotransmitter produced by the substantia nigra of the midbrain region. A common medical treatment for Parkinson’s is the replacement of dopamine with its immediate precursor levodopa. Here are some of the key aspects regarding use of carbidopa/levodopa for treating Parkinson’s:

  1. Dopamine does not make it through the blood brain barrier to get to the brain;
  2. Levodopa (also known as L-3,4,-dihydroxyphenylalanine) is an amino acid that can cross the blood brain barrier and then be converted to dopamine;
  3. In the G.I. tract and the bloodstream, levodopa can be converted to dopamine by an enzyme named aromatic-L-amino-acid decarboxylase (DOPA decarboxylase or DDC),  which reduces the amount of levodopa that reaches the brain;
  4.  Carbidopa is a small molecule that prevents DOPA decarboxylase from converting levodopa to dopamine;
  5.  Carbidopa cannot pass through the blood brain barrier;
  6.  The “gold standard” treatment for Parkinson’s is a combination of carbidopa/levodopa, these drugs are commonly known as Sinemet, Sinemet CR, and Parcopa;
  7.  To review, we ingest carbidopa/levodopa, the carbidopa inhibits tissue enzymes that would break down the levodopa, this allows the levodopa to reach the blood-brain barrier, and then get converted to dopamine in the brain.
  8. Important side-note: Levodopa is an amino acid that crosses the blood brain barrier through a molecular amino acid transporter that binds amino acids.  Thus, eating and digestion of a protein-rich meal (also to be broken down to amino acids) either before or with your carbidopa/levodopa dose would competitively lower transport of levodopa across the blood brain barrier.  You should have been advised to take your carbidopa/levodopa doses (i) on an empty stomach, (ii) ~1 hr before eating or (iii) ~1-2 hr after eating (assuming you can tolerate it and the drug doesn’t cause nausea); this would insure your dose of levodopa gets across the blood brain barrier.

Here are the structures of the main players (top-left panel is levodopa; top-right panel is carbidopa; and the most commonly used dose is 25/100 immediate release carbidopa-levodopa (tablet with 25 mg carbidopa and 100 mg levodopa) on the bottom panel.

“The quality of your life is dependent upon the quality of the life of your cells. If the bloodstream is filled with waste products, the resulting environment does not promote a strong, vibrant, healthy cell life-nor a biochemistry capable of creating a balanced emotional life for an individual.” Tony Robbins

What’s the big deal about homocyteine (Hcy)?  Homocysteine is a sulfur-containing amino acid formed by demethylation of the essential amino acid methionine. Methionine is first modified to form S-adenosylmethionine (SAM), the direct precursor of Hcy,  This is important because SAM serves as a methyl-group “donor” in almost all biochemical pathways that need methylation (see figure below).  There are pathways that Hcy follows; importantly, the B vitamins of B6, B12 and folic acid are required for proper recycling/processing of Hcy.   An abnormal increase in levels of Hcy says that some disruption of this cycle has occurred.     Elevated Hcy is associated with a wide range of clinical manifestations, mostly affecting the central nervous system. Elevated Hcy has also been associated with an increased risk for atherosclerotic and thrombotic vascular diseases.  The mechanism for how Hcy damages tissues and cells remains under study; however, many favor the notion that excess Hcy increases oxidative stress.  As you might see why from the figure below, Hcy concentrations may increase as a result of deficiency in folate, vitamin B6 or B12. To recap, Hcy is a key biochemical metabolite focused in the essential methyl-donor pathway, whereby successful utilization of Hcy requires a role for complex B vitamins.  By contrast,  there is substantial evidence for a role of elevated Hcy as a disease risk factor for the cardiovascular and central nervous systems.

SAM+HCY


“We need truth to grow in the same way that we need vitamins, affection and love.” Gary Zukav

Sustained use of carbidopa/levodopa can result in elevated levels of homocysteine: As shown below, one of the reactions on levodopa involves methylation to form a compound named 3-O-methyldopa (3-OMD).   The reaction involves the enzyme catechol-O-methyl-transferase (COMT) and requires SAM as the methyl group donor. There is evidence that plasma Hcy levels are higher in carbidopa/levodopa-treated Parkinson’s patients when compared to controls and untreated Parkinson’s patients.  Interpretation of these results suggest the elevated Hcy levels is due to the drug itself and not from Parkinson’s.

Levodopa-3MO

B vitamins (folate, B6, B12) reduce homocysteine produced by carbidopa/levodopa therapy:   Based on the cycle and loops drawn below, they are not strictly one-way in  that theoretically you can drive the reaction in the reverse direction by using an excess amount of folate (NIH fact sheet, click here), vitamin B6 (NIH fact sheet, click here) and vitamin B12 (NIH fact sheet, click here) to reduce levels of Hcy. Folate supplementation was  previously found to reduces Hcy levels when used to treat an older group of people with vascular disease. Using the scheme depicted below as given in the slideshow there are four points I’d like to make:

  1. One might envision the brain is constantly processing a very small amount of levodopa to dopamine throughout the day. By contrast, we take 100’s of         milligram quantities of levodopa several times a day almost as if  we are giving ourselves a bolus of the precursor that reaches the brain. This scheme suggests that L-DOPA + SAM by COMT will produce Hcy; Over time ↑Hcy levels would be generated, leading to hyper-Hcy. Implied by hyper-Hcy is the consumption of B vitamins like folate, B12 and B6; deficiency of these vitamins would contribute to the body being unable to metabolize the excess Hcy.
  2. The folate/vitamin B12 cycle is crucial for DNA synthesis in our body.  This cycle verifies the essential role of folate and vitamin B12 in our diet and demonstrates their function in a key biochemical pathway. This also suggests that making too much Hcy could potentially consume both folate and B12, which would be detrimental to you. By contrast, the cycle also implies that by taking excess  folate and vitamin B12 you might drive the reaction the other direction and reduce the amount of Hcy generated,  and preserve the biochemical integrity of the cycle.
  3.  The processing of HCy is somewhat dependent on vitamin B6.  In the presence of excess Hcy you would consume the vitamin B6 ; however, the cycle also implies in the presence of an excess of vitamin B6 would allow the processing of Hcy further downstream.
  4.  Finally, unrelated to the B vitamins, the addition of N-Acetyl-cysteine (NAC) to the pathway would generate glutathione, which would help consume the excess Hcy  and also generate a very potent antioxidant compound.

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“1914…Dr. Joseph Goldberger had proven that (pellagra) was related to diet, and later showed that it could be prevented by simply eating liver or yeast. But it wasn’t until the 1940’s…that the ‘modern’ medical world fully accepted pellagra as a vitamin B deficiency.” G. Edward Griffin

Beware of taking a huge excess of vitamin B6 in the presence of carbidopa/levodopa, a cautionary tale: I started taking a supplement that had relatively large amounts of complex B vitamins  (specifically the one labeled number two below) had 100% (400 mcg) folate, 1667% (100 mcg) vitamin B12 and 5000% (100 mg) of vitamin B6 (based on daily requirement from our diet).   Over a period of several days I started feeling stiffer, weaker as if  my medicine had stopped treating my Parkinson’s. I especially noticed it one day while playing golf because I had lost significant yardage on my shots, I was breathing heavily, and I was totally out of sync with my golf swing.  Just in general, my entire body was not functioning well.  Timing wise, I was taking the complex B vitamin pill with my early morning carbidopa/levodopa pill on an empty stomach. Something was suddenly (not subtly) wrong with the way I was feeling, and the only new addition to my treatment strategy was this complex B  vitamin pill. There had to be an explanation.

17.08.16.B_Vitamins

I went home and started thinking like a biochemist, started searching the Internet as an academic scientist, and found the answer in the old archives of the literature.  The older literature says taking more than 15 mg of vitamin B6 daily could compromise the effectiveness of carbidopa to protect levodopa from being activated in the tissues. Thus, I may have been compromising at least one or more doses of levodopa daily by taking 100 mg of vitamin B6 daily.  Let me further say I found that the half-life of vitamin B6 was 55 hours; furthermore, assuming 3L of plasma to absorb the vitamin B6, and a daily dose of 100 mg I plotted the vitamin B6 levels in my bloodstream. The calculation is based on a simple, single compartment elimination model assuming 100% absorbance that happens immediately. The equation is: concentration in plasma (µg/ml vitamin B6) = dose/volume * e^(-k*t) :

Screen Shot 2017-09-11 at 8.37.48 PM

And further inspection of the possible reaction properties between vitamin B6, carbidopa and even levodopa suggests that vitamin B6 could be forming a Schiff Base, which would totally compromise the ability of either compound to function biologically (this is illustrated below).   And I should have known this because some of my earliest publications studied the binding site of various proteins and they were identified using vitamin B6 modifying the amino groups of the proteins (we were mapping heparin-binding sites):

Church, F.C., C.W. Pratt, C.M. Noyes, T. Kalayanamit, G.B. Sherrill, R.B. Tobin, and J.B. Meade (1989) Structural and functional properties of human α-thrombin, phosphopyridoxylated-α-thrombin and γT-thrombin: Identification of lysyl residues in α-thrombin that are critical for heparin and fibrin(ogen) interactions.  J. Biol. Chem. 264: 18419-18425.

Peterson, C.B., C.M. Noyes, J.M. Pecon, F.C. Church and M.N. Blackburn (1987)  Identification of a lysyl residue in antithrombin which is essential for heparin binding.  J. Biol. Chem.  262: 8061-8065.

Whinna, H.C., M.A. Blinder, M. Szewczyk, D.M. Tollefsen and F.C. Church (1991) Role of lysine 173 in heparin binding to heparin cofactor II.  J. Biol. Chem.  266: 8129-813

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“…The Chinese in the 9th century AD utilized a book entitled The Thousand Golden Prescriptions, which described how rice polish could be used to cure beri~beri, as well as other nutritional approaches to the prevention and treatment of disease. It was not until twelve centuries later that the cure for beri~beri was discovered in the West, and it acknowledged to be a vitamin B-1 deficiency disease.” Jeffrey Bland

To take or not to take, complex B vitamin supplementation:  I literally have been writing and working on this post since July; it started as a simple story about the use of complex B vitamins to reduce homocysteine levels as a consequence of chronic carbidopa/levodopa use to manage Parkinson’s.   If you eat a good healthy diet you’re getting plenty of B vitamins. Do you need mega-doses of complex B vitamins? My cautionary note described taking very large amounts of vitamin B6 may be compromising both carbidopa and/or levodopa. You should talk with your Neurologist because it’s straightforward to measure folate, vitamin B6 and B12, and homocysteine levels to see if they are in the normal range if you are taking carbidopa/levodopa. The hidden subplot behind the story is the growing awareness and importance of managing homocysteine levels and also knowing the levels of folate, B6 and B12 to help maintain your neurological health.  Bottom line, if you need it, take a multiple vitamin with only 100 to 200% of your daily need of vitamin B6 (what is shown in panel three and four above). And please be careful if you decide to take a larger dose of vitamin B6 (between 10-100 mg/day).

“A risk-free life is far from being a healthy life. To begin with, the very word “risk” implies worry, and people who worry about every bite of food, sip of water, the air they breathe, the gym sessions they have missed, and the minutiae of vitamin doses are not sending positive signals to their cells. A stressful day sends constant negative messaging to the feedback loop and popping a vitamin pill or choosing whole wheat bread instead of white bread does close to zero to change that.” Deepak Chopra

Cover photo credit:

photos.smugmug.com/Kure-Beach-NC/i-QS7T6sW/2/df8e6878/L/kbp3-L.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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10 “P-Words” That Will Help Your Career Even in the Presence of Parkinson’s

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sign post scienceofparkinsons.com/

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.

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Parkinson’s Awareness Month: Greetings from North Carolina, USA

With Parkinson’s you have two choices: You can let it control you, or you can control it. And I’ve chosen to control it.” US Senator Isakson

“Perhaps I am stronger than I think.” Thomas Merton

Précis: A brief overview about Parkinson’s disease, highlights from our Moving Day NC Triangle Planning Committee during “Parkinson’s Disease Awareness Month”, and some interesting points about the State of North Carolina.

Parkinson’s disease overview:

“The strongest people are not those who show strength in front of us but those who win battles we know nothing about.” Anonymous

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. Blake Tedder, our Parkinson’s Foundation Community Development Manager, has been busy.  He has been requesting/receiving proclamations recognizing and acknowledging the impact of Parkinson’s.  We will be thanking Blake for the rest of the year in his tireless effort on Parkinson’s disease; from all of us on the Moving Day planning committee, thank you Blake!

“We aren’t victims, we are strong, amazing people who just happen to have a crummy disease, and we want a cure to that disease”  Kate Matheson

Partial list of events where we have received proclamations (click here for the complete list- 2017PAM_Proclamations_final):

  • Town of Carrboro – Tuesday March 28th 7:30pm – Carrboro Town Hall, Carrboro
    Attending: Blake Tedder, National Parkinson Foundation
    Frank Church, PhD, UNC School of Medicine, Moving Day Planning committee, PWP;
  • Wake County – Monday April 3rd– 5:00pm – Wake Justice Building, Raleigh
    Attending: David E. Malarkey, DVM/PhD, Councilor, People with Parkinson’s Advisory Council, Parkinson’s Foundation;
  • Durham – Monday April 3rd– 7:00pm – Wake Justice Building, Raleigh
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Jeaninne Wagner, Moving Day Planning committee, PWP;
  • Orange County – Tuesday April 4th– 7:00pm – Whitted Building, Hillsborough
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Susan Gerbeth-Jones, MS, Orange County Resident, PWP;
  • Durham County – Tuesday April 11th– 7:00pm – Durham County Building/Main St, Durham|
    Attending: Blake Tedder, MSW, National Parkinson Foundation;
  • Town of Chapel Hill – Monday April 17th7:00pm – Chapel Hill Town Hall, Chapel Hill
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Frank Church, PhD, UNC School of Medicine, Moving Day Planning committee, PWP
    Jessica Shurer, MSW, Social Worker/Coordinator UNC Department of Neurology Movement Disorders Clinic;
  • Received via Mail or outside of a Formal Meeting:
    State of North Carolina – Governor Roy Cooper
    North Carolina Senate – Sen. Floyd McKissick
    Town of Cary –  Mayor Weinbrecht
    Town of Hillsborough – Mayor Tom Stevens
    City of Raleigh – Mayor Nancy MacFarlane

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“Chris[topher] Reeve wisely parsed the difference between optimism and hope. Unlike optimism, he said, ‘Hope is the product of knowledge and the projection of where the knowledge can take us.” Michael J. Fox

10-interesting points about North Carolina (click here for the complete list):

  • The University of North Carolina Chapel Hill is the oldest State University in the United States.
  • In 1903 the Wright Brothers made the first successful powered flight by man at Kill Devil Hill near Kitty Hawk. The Wright Memorial at Kitty Hawks now commemorates their achievement.
  • Mount Mitchell in the Blue Ridge Mountains is the highest peak east of the Mississippi. It towers 6,684 feet above sea level.
  • The first English colony in America was located on Roanoke Island. Walter Raleigh founded it. The colony mysteriously vanished with no trace except for the word “Croatoan” scrawled on a nearby tree.
  • High Point is known as the Furniture Capital of the World.
  • Babe Ruth hit his first home run in Fayetteville on March 7, 1914.
  • The Biltmore Estate in Ashville is America’s largest home, and includes a 255-room chateau, an award-winning winery and extensive gardens.
  • Pepsi was invented and first served in New Bern in 1898.
  • North Carolina leads the nation in furniture, tobacco, brick, and textile production.
  • Arnold Palmer recognized as the player whose aggressive play and winning personality raised golf to national attention, honed his skills on the championship golf team of Wake Forest University.

The State motto of North Carolina is “Esse quam videri” (To be rather than to seem),  which says be who you really are instead of who/how you want people to think you are.  Here is an editorial about our State motto (click here to read it).

A few closing personal comments about North Carolina: I was 24 years old in 1978 when I moved to Raleigh, North Carolina to begin working on my PhD.  Thirty-nine years later, I still call North Carolina home.  For 35 years I’ve been in Chapel Hill and working at UNC-Chapel Hill.  This is a beautiful state, with mountains on the western edge and the ocean on the eastern side.  We are quite blessed geographically.  We seem to be a ‘melting-pot’ for many from the northeast, midwest and western states to move here for career or to retire.  I really think we have nice 4-season weather (usually). The pictures below highlight just a few areas: beaches, mountains, beautiful downtown skyline of Charlotte, and the town of Chapel Hill (which changes dramatically when UNC-CH wins a national basketball championship).  I’ve been branded the ‘northerner of my family’ (my roots are in Louisiana and Alabama), but I’ve grown to really enjoy calling North Carolina home.  

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“Always remember, your life matters now with Parkinson’s as much as it did before Parkinson’s. Stay hopeful as you navigate adversity, stay you in spite of your Parkinson’s.” Frank C. Church

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