Tag Archives: life

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

A Good Life With Parkinson’s

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

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

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

18.01.13b.Live_Better_PD

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

Fortitude-
Stay strong in your effort with your adversity.

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

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

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

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

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

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

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

“Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.” Mother Teresa

Cover photo credit: http://ognature.com/path-snow-winter-mist-sunset-sun-trees-wallpaper-iphone-6/

 

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

Complementary and Alternative Medicine (CAM) and Over-the-Counter Therapies in Parkinson’s

With Parkinson’s, exercise is better than taking a bottle of pills. If you don’t do anything you’ll just stagnate.” Brian Lambert

“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

Introduction: Having one of the numerous neurodegenerative disorders can be disheartening, difficult and life-threatening/ending; however, Parkinson’s remains in the forefront of treatment schemes and therapeutic options.  We may have a slowly evolving disorder, yet I remain firmly entrenched both in striking back to try-to-slow its progression and in remaining hopeful that new advances are on the horizon to throttle-back its progression.  Recently, several people have asked for an update on my strategy for treating Parkinson’s.  My plan consists of (i) traditional Parkinson’s medication,  (ii) supplemented by a complementary and alternative medicine (CAM) approach, and (iii) fueled by exercise. My philosophy is simple because I truly believe there are steps I can follow to remain as healthy as possible, which include having a positive mindset to support this effort, and to accept the axiom of the harder I try the better I’ll be.

“Life is to be lived even if we are not healthy.” David Blatt

Complementary and Alternative Medicine (CAM):The National Institutes of Health defines CAM as follows: “Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard medical care. ‘Complementary medicine’ refers to treatments that are used with standard treatment. ‘Alternative medicine’ refers to treatments that are used instead of standard treatment.”  Here is a nice overview of CAM (click here). The National Center for CAM (click here for NCCAM) gives five categories to broadly describe CAM (see below, and followed by some representative components for each of the 5 categories):

17.12.31.CAM_Summary

(1) Alternative medical systems include treatment by traditional Chinese medicine, Ayurveda and naturopathic medicine;
(2) Mind-body interventions like mindfulness meditation;
(3) Biologically-based therapies include over-the-counter natural products and herbal therapies;
(4) Manipulative and body-based methods describe chiropractic and massage therapies;
(5) Energy therapies include techniques such as Reiki and therapeutic touch.

“My way of dealing with Parkinson’s is to keep myself busy and ensure my mind is always occupied.” David Riley

CAM and Parkinson’s: Published CAM clinical trial studies have yielded only a sliver of positive response to slowing the progression of Parkinson’s, several were halted due to no change compared to the placebo-control group. Regardless of these ‘failed’ studies, many have embraced a CAM-based approach to managing their disorder, including me. Please remember that I’m not a clinician, and I’m not trying to convince you to adopt my strategy.  I am a biochemist trained in Hematology but I do read and ponder a lot, especially about Parkinson’s.  We know a lot about Parkinson’s and we’re learning a lot about the molecular details to how it promotes the disease.  There is not a cure although we have a growing array of drugs for therapeutic intervention.  Without a  cure, we look at the causes of Parkinson’s (see schematic below), we consider various CAM options, and we go from there (see schematic below). If you venture into adding to your portfolio of therapy, it is imperative you consult with your Neurologist/family medicine physician beforehand.  Your combined new knowledge with their experience can team-up to make an informed decision about your herb, over-the-counter compound use and its potential benefit/risk ratio.

17.12.31.PD_Cause.CAM“I discovered that I was part of a Parkinson’s community with similar experiences and similar questions that I’d been dealing with alone.”Michael J. Fox

A strategy for treating Parkinson’s: The treatment plan I follow uses traditional medical therapy, CAM (several mind-body/manual practices and numerous natural products) and the glue that ties it all together is exercise.  Presented here is an overview of my medical therapy and CAM natural products. I only list the exercises I am using, not describe or defend them.  Due to my own personal preference for the length of a blog post, I will return to them later this year and include an update of the mind-body/manual practices that I’m currently using. Please note that these views and opinions expressed here are my own. Content presented here is not meant as medical advice. Definitely consult with your physician before taking any type of supplements.   The schematic below gives a ‘big-picture’ view of my treatment strategy.

18.01.01.Daily_Take. brain.druge.CAM.Exercise

To some, my treatment plan may seem relatively conservative. It has been developed through conversations with my Neurologist and Internist.  This was followed by studying the medical literature on what has worked in Parkinson’s treatment, the list of compounds to consider was defined/refined (actually, my choice of OTC compounds has been trimmed from several years ago).  My CAM drug/vitamin/natural products strategy for treating Parkinson’s goes as follows: a) compounds (reportedly) able to penetrate the blood brain barrier; b) compounds (possibly) able to slow progression of the disorder; c) compounds that either are anti-oxidative or are anti-inflammatory; d) compounds that don’t adversely alter existing dopamine synthesis/activity; e) compounds that support overall body well-being; and f) compounds that support specific brain/nervous system health/nutrition. [Please consult with your physician before taking any type of supplements.] The Table below presents a detailed overview of my strategy for treating Parkinson’s.

18.01.01.DailyTherapy4Note of caution: Most herbs and supplements have not been rigorously studied as safe and effective treatments for PD. The U.S. Food and Drug Administration (FDA) does not strictly regulate herbs and supplements; therefore, there is no guarantee of safety, strength or purity of supplements.

REPLACING DOPAMINE:
On a daily basis, I use a combination of Carbidopa/Levodopa (25 mg/100 mg tablet x 4 daily, every 5 h on an empty stomach if possible, typically 6AM, 11AM, 4PM, 9PM) and a dopamine agonist Requip XL [Ropinirole 6 mg total (3 x 2 mg tablets) x 3 daily, every 6 h, typically 6AM, noon, 6PM).  This treatment strategy and amount combining Carbidopa/Levodopa and Ropinirole has been in place for the past 18 months (NOTE: I stopped using the additional dopamine agonist Neupro transdermal patch Rotigotine). For an overview on Carbidopa/Levodopa, I highly recommend the following 2 papers:
[1.] 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.
[2.] 1. Espay AJ, Lang AE. Common Myths in the Use of Levodopa in Parkinson Disease: When Clinical Trials Misinform Clinical Practice. JAMA Neurol. 2017. doi: 10.1001/jamaneurol.2017.0348. PubMed PMID: 28459962.

ISRADIPINE:
An FDA-approved calcium-channel blocker (CCB) named Isradipine penetrates the blood brain barrier to block calcium channels and potentially preserve dopamine-making cells. Isradipine may slow the progression of Parkinson’s. The primary use of Isradipine is in hypertension; thus, to treat my pre-hypertension I switched from the diuretic Hydrochlorothiazide to the CCB Isradipine.  A CCB is a more potent drug than a diuretic; importantly, my blood pressure is quite normal now and maybe I’m slowing the progression of my Parkinson’s. Please see this blog post for a review of Isradipine (click here). [Please consult with your physician before taking any type of new medication.

ANTIOXIDANTS/VITAMINS/GENERAL HEALTH:
N-Acetyl-Cysteine (NAC; 600 mg x 3 daily) is a precursor to glutathione, a powerful anti-oxidant. In several studies, NAC has been shown to be neuroprotective in Parkinson’s (click here).  I have recently posted an overview of NAC (click here). Furthermore, the ‘Science of Parkinson’s disease’ has presented their usual outstanding quality in a blog post on NAC in PD (click here);
trans-Resveratrol (200 mg daily) is an antioxidant that crosses the blood-brain barrier, which could reduce both free-radical damage and inflammation in Parkinson’s. If you decide to purchase this compound, the biologically-active form is trans-Resveratrol. The ‘Science of Parkinson’s disease’ has an excellent blog post on Resveratrol in PD (click here);
Grape Seed (100 mg polyphenols, daily) is an antioxidant that crosses the blood-brain barrier, which could reduce both free-radical damage and inflammation in Parkinson’s;
Milk Thistle (Silybum Marianum, 300 mg daily) and its active substance Silymarin protects the liver.  Dr. Jay Lombard in his book, The Brain Wellness Plan, recommends people with PD who take anti-Parkinson’s drugs (metabolized through the liver) to add 300 mg of Silymarin (standardized milk thistle extract) to their daily medication regime.
Melatonin (3 mg 1 hr before sleep) Melatonin is a hormone that promotes sustained sleep. Melatonin is also thought to be neuroprotective (click here);
Probiotic Complex with Acidophilus is a source of ‘friendly’ bacteria to contribute to a healthy GI tract.
Vitamin (daily multiple)
A high-potency multivitamin with minerals to meet requirements of essential nutrients, see label for content [I only take 1 serving instead  of the suggested 2 gummies due to my concern about taking a large amount of Vitamin B6 as described in a recent blog (click here)]:
IMG_2059 copyVitamin D3 (5000 IU 3 times/week) is important for building strong bones. Now we also know that vitamin D3 is almost like ‘brain candy’ because it stimulates hundreds of brain genes, some of which are anti-inflammatory and some support nerve health (click here). Supplementation with vitamin D3 (1200 IU/day) for a year slowed the progression of a certain type of Parkinson’s (click here). Furthermore, augmentation with vitamin D3 was recently shown to slow cognitive issues in Parkinson’s (click here).

NO LONGER TAKE Coenzyme Q10 (CoQ10), Creatine and Vitamin E because they did not delay the progression of Parkinson’s or they were harmful.
NO LONGER TAKE a high potency Vitamin B Complex (see label below) due to my concern that a large excess vitamin B6 could be detrimental to Carbidopa/Levodopa (click here for blog post):
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List of several recent PubMed peer-reviewed CAM reviews (includes a more comprehensive overview of all areas of CAM in treating Parkinson’s):
Bega D, Zadikoff C. Complementary & alternative management of Parkinson’s disease: an evidence-based review of eastern influenced practices. J Mov Disord. 2014;7(2):57-66. doi: 10.14802/jmd.14009. PubMed PMID: 25360229; PMCID: PMC4213533.

Bega D, Gonzalez-Latapi P, Zadikoff C, Simuni T. A Review of the Clinical Evidence for Complementary and Alternative Therapies in Parkinson’s Disease. Current Treatment Options in Neurology. 2014;16(10):314. doi: 10.1007/s11940-014-0314-5.

Ghaffari BD, Kluger B. Mechanisms for alternative treatments in Parkinson’s disease: acupuncture, tai chi, and other treatments. Curr Neurol Neurosci Rep. 2014;14(6):451. doi: 10.1007/s11910-014-0451-y. PubMed PMID: 24760476.

Kim HJ, Jeon B, Chung SJ. Professional ethics in complementary and alternative medicines in management of Parkinson’s disease. J Parkinsons Dis. 2016;6(4):675-83. doi: 10.3233/JPD-160890. PubMed PMID: 27589539; PMCID: PMC5088405.

Kim TH, Cho KH, Jung WS, Lee MS. Herbal medicines for Parkinson’s disease: a systematic review of randomized controlled trials. PLoS One. 2012;7(5):e35695. doi: 10.1371/journal.pone.0035695. PubMed PMID: 22615738; PMCID: PMC3352906.

Wang Y, Xie CL, Wang WW, Lu L, Fu DL, Wang XT, Zheng GQ. Epidemiology of complementary and alternative medicine use in patients with Parkinson’s disease. J Clin Neurosci. 2013;20(8):1062-7. doi: 10.1016/j.jocn.2012.10.022. PubMed PMID: 23815871. 

Today we take control over our Parkinson’s:
Please stay focused on dealing with your disorder.
Please learn as much as you can about Parkinson’s.
Please work with your neurologist to devise your own treatment strategy.
Please stretch and exercise on a daily basis, it will make a difference.
Please be involved in your own disorder; it matters that you are proactive for you.
Please stay positive and focused as you deal with this slowly evolving disease.
Please stay hopeful you can mount a challenge to slow the progression.
Please remain persistent; every morning your battle renews and you must be prepared.

 

In the midst of winter, I found there was, within me, an invincible summer.  And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” Albert Camus

Cover photo credit: news.nowmedia.co.za/medialibrary/Article/109153/Wine-grape-crop-6-7-down-in-2016-800×400.jpg

 

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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17.12.26b_7 Habits For Working with PD

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

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

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

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

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

List of positive words:

list-of-positive-words

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

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

17.12.28.Healthy_brain

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

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

 

 

 

 

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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