All posts by Frank Church

Medical school and undergraduate biology educator, biomedical science researcher and part-time golfer. My diagnosis of Parkinson's Disease, combined with my career in science and education, allows me the ultimate "teachable moment". Thus, the theme of this blog is my journey with Parkinson's.

The Yack on NAC (N-Acetyl-Cysteine) and Parkinson’s

“Once you choose hope, anything’s possible.” Christopher Reeve

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.” Lin Yutang

Introduction: N-Acetyl-Cysteine (or N-acetylcysteine, usually abbreviated NAC and frequently pronounced like the word ‘knack’) is an altered (modified by an N-acetyl-group) form of the sulfur-containing amino acid cysteine (Cys).  NAC is one of the building blocks for the all important antioxidant substance glutathione (GSH).   GSH is a powerful reagent that helps cells fight oxidative stress.  One of the putative causes of Parkinson’s is oxidative stress on dopamine-producing neurons (see figure below). This post summarizes some of the biochemistry of NAC and GSH.  Furthermore, NAC may provide some neuroprotective benefit as a complementary and alternative medicine (CAM) approach to treating Parkinson’s.

“Losing the possibility of something is the exact same thing as losing hope and without hope nothing can survive.” Mark Z. Danielewski

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 Glutathione (GSH):  GSH is a 3-amino acid substance (tripeptide) composed of Cys linked to glutamate (Glu) and followed by glycine (Gly). NAC would need to be de-acetylated to provide Cys and that would feed in to the reaction synthesis. Importantly, Cys is the rate limiting reactant, which means without adequate amounts of Cys you do not make GSH.   The schematic below gives the orientation and order of addition of the three amino acid components to give you GSH.

NACtoGSH

There are two advantages of NAC over Cys for making GSH: (i) the sulfhydryl group of NAC remains reduced (that is as an SH group) more so than the SH group of Cys; and (ii) the NAC molecule appears to transport itself through cell membranes much more easily than Cys.  The reduced (i.e.,  free SH group) form of GSH, once synthesized within the cell, has several key functions that range from antioxidant protection to protein thiolation to drug detoxification in many different tissues.   The key function of GSH is to provide what is known as “reducing equivalents” to the cell, which implies an overall key antioxidant effect.

The schematic below shows NAC transport from extracellular to intracellular (inside the cell), and the primary reactions for detoxification and thiolation from GSH. Implied by this figure below is that GSH is not easily transported into the cell. Furthermore, in a more toxic/hostile environment outside of the cell, you can easily oxidize 2 GSH molecules to become GSSG (the reduced SH group gets oxidized to form an S-S disulfide bond) and GSSG does not have the antioxidant effect of GSH.   However, inside the cell, GSH is a very potent antioxidant/detoxifying substance. And the beauty of being inside the cell, there is an enzyme called GSH-reductase that regenerates GSH from GSSG.

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To recap and attempt to simplify what I just said, NAC gets delivered into a cell, which then allows the cell to generate intracellular GSH.  The presence of intracellular GSH gives a cell an enormous advantage to resist potentially toxic oxidative agents. By contrast, extracellular GSH has a difficult path into the cell; and is likely to be oxidized to GSSG and rendered useless to help the cell.

“Just remember, you can do anything you set your mind to, but it takes action, perseverance, and facing your fears.”  Gillian Anderson

One of many biological functions of NAC:   Perhaps the most important medical use of NAC is to help save lives in people with acetaminophen toxicity, in which the liver is failing.  How does NAC do this?  Acetaminophen is sold as Tylenol.  It is also added to compounds that are very important for pain management ()analgesics), including Vicodin and Percocet. Acetaminophen overdose is the leading cause of acute liver failure in the USA.   This excess of acetaminophen rapidly consumes the GSH in the liver, which then promotes liver death.  NAC quickly restores protective levels of GSH  to the liver, which hopefully reverses catastrophic liver failure to prevent death.

Systemically, when taken either orally or by IV injection, NAC would have 2 functions.  First, NAC replenishes levels of Cys to generate the intracellular antioxidant GSH (see schemes above).  Second, NAC has been shown to regulate gene expression of several pathways that link oxidative stress to inflammation.  Since the primary goal of this post relates to NAC as a CAM in Parkinson’s, I will not expand further on the many uses of NAC in other disease processes.  However, listed at the end are several review articles detailing the numerous medicinal roles of NAC.

“Love, we say, is life; but love without hope and faith is agonizing death.” Elbert Hubbard

Use of NAC as a CAM in Parkinson’s:   This is what we know about oxidative stress in Parkinson’s and the potential reasons why NAC could be used as a CAM in this disorder, it goes as follows  (it’s also conveniently shown in the figure at the bottom):

1. Substantia nigra dopamine-producing neurons die from oxidative stress, which can lead to Parkinson’s.

2.What is oxidative stress? Oxidative stress happens when your cells in your body do not make/have enough antioxidants to reduce pro-oxidants like free radicals. Free radicals cause cell damage/death when they attack proteins/cell membranes.

3.We speak of oxidative stress in terms of redox imbalance (which means the balance between increased amounts of oxidants or  decreased amounts of antioxidants).

4.Glutathione (GSH) is a key substance used by cells to repair/resist oxidatively damaged cells/proteins.

5.”Forces of evil” in the brain that make it difficult to resist oxidative stress:  decreased levels of GSH,  increased levels of iron and  increased polyunsaturated fatty acids.

6.Extracellar GSH cannot be transported easily into neurons, although there is evidence GSH gets past the blood brain barrier;

7.N-acetyl Cysteine (NAC), is an anti-oxidant and a precursor to GSH.  NAC gets through the blood brain barrier and can also be transported into neurons.

8.Cysteine is the rate-limiting step for GSH synthesis (NAC would provide the cysteine and favor synthesis of GSH).

9.Animal model studies have shown NAC to be neuroprotective.

10. Recent studies have shown NAC crosses the human blood brain barrier and may be a useful PD-modifying therapy.

 

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“You cannot tailor-make the situations in life but you can tailor-make the attitudes to fit those situations.”  Zig Ziglar

Scientific and clinical support for NAC in treating Parkinson’s: Content presented here is meant for informational purposes only and not as medical advice.  Please remember that I am a basic scientist, not a neurologist, and any use of these compounds should be thoroughly discussed with your own personal physician. This is not meant to be an endorsement  because it would be more valuable and important for your neurologist to be in agreement with the interpretation of these papers.

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To evaluate the use of NAC in Parkinson’s, Katz et al. treated 12 patients with Parkinson’s with oral doses of NAC twice a day for two days.   They studied three different doses of 7, 35, and 70 mg per kilogram. For example, in a person weighing 170 pounds, from a Weight Based Divided Dose Calculator (click here), this would be 540, 2700, and 5400 mg/day of NAC for 7, 35, and 70 mg/kg, respectively. Using cerebral spinal fluid (CSF), they measured levels of  NAC, Cys, and GSH at baseline and 90 minutes after the last dose. Their results showed that there was a dose-dependent range of NAC as detected by CSF. And they concluded that oral administration of NAC produce biologically relevant CSF levels of NAC at the three doses examined; the doses of oral NAC were also well-tolerated.  Furthermore, the patients treated with NAC had no change in either motor or cognitive function. Their conclusions support the feasibility of using oral NAC as a CAM therapy for treatment of Parkinson’s.

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In a separate study, Monti at al  presented some preliminary evidence for the use of NAC in Parkinson’s. The first part of their study consisted of a neuronal cell system that was pre-treated with NAC in the presence of the pesticide rotenone as a model of Parkinson’s.   These results showed that with NAC there was more neuronal cell survival after exposure to rotenone compared to the rotenone-treated cells without NAC. The second part of the study was a small scale clinical evaluation using NAC in Parkinson’s. These patients were randomized and given either NAC or nothing and continued to use their traditional medical care. The patients were evaluated at the start and after three months of receiving NAC; they measured dopamine transporter binding and  performed the unified Parkinson’s disease rating scale  (UPDRS) to measure clinical symptoms. The clinical study revealed an increase in dopamine transporter binding in the NAC treatment group and no measurable changes in the control group. Furthermore UPDRS scores were significantly improved in the NAC treatment group compared to the control patient group.   An interesting feature of this study was the use of pharmaceutical NAC, which is an intravenous (IV) medication and they also used 600 mg NAC tablets. The dose used was 50 mg per kg mixed into sterile buffer and infused over one hour one time per week. In the days they were not getting the IV NAC treatment, subjects took 600 mg NAC tablets twice per day.

 Okay, what did I just say? I will try to summarize both of these studies in a more straightforward manner.   The results above suggest that NAC crosses the blood brain barrier and does offer some anti-oxidative protection. In one study, this was shown by increased levels of both GSH and Cys dependent on the NAC dose. In another study, they directly measured dopamine transporter binding, which was increased in the presence of NAC. In the second study using a three month treatment strategy with NAC, there was a measurable positive effect on disease progression as measured by UPDRS scores.  

“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.” Thomas A. Edison

Potential for NAC in treating Parkinson’s: Overall, both studies described above suggest the possibility that NAC may be useful in treating Parkinson’s. However, in both cases these were preliminary studies that would require much larger randomized double-blind placebo-controlled trials to definitively show a benefit for using NAC in treating Parkinson’s. On a personal note, I have been taking 600 mg capsules of NAC three times a day for the past year with the hope that it is performing the task as outlined in this post. Using information from the first study that would be a NAC dose of 24 mg per kilogram body weight. In conclusion, the information described above suggests that NAC may be useful in regulating oxidative stress, one of the putative causes of Parkinson’s. As with all studies, time will tell if ultimately there is a benefit for using NAC in Parkinson’s.

“I am not an optimist, because I am not sure that everything ends well. Nor am I a pessimist, because I am not sure that everything ends badly. I just carry hope in my heart. Hope is the feeling that life and work have a meaning. You either have it or you don’t, regardless of the state of the world that surrounds you. Life without hope is an empty, boring, and useless life. I cannot imagine that I could strive for something if I did not carry hope in me. I am thankful to God for this gift. It is as big as life itself.” Vaclav Havel

References Used:
Katz M, Won SJ, Park Y, Orr A, Jones DP, Swanson RA, Glass GA. Cerebrospinal fluid concentrations of N-acetylcysteine after oral administration in Parkinson’s disease. Parkinsonism Relat Disord. 2015;21(5):500-3. doi: 10.1016/j.parkreldis.2015.02.020. PubMed PMID: 25765302.

Martinez-Banaclocha MA. N-acetyl-cysteine in the treatment of Parkinson’s disease. What are we waiting for? Med Hypotheses. 2012;79(1):8-12. doi: 10.1016/j.mehy.2012.03.021. PubMed PMID: 22546753.

Monti DA, Zabrecky G, Kremens D, Liang TW, Wintering NA, Cai J, Wei X, Bazzan AJ, Zhong L, Bowen B, Intenzo CM, Iacovitti L, Newberg AB. N-Acetyl Cysteine May Support Dopamine Neurons in Parkinson’s Disease: Preliminary Clinical and Cell Line Data. PLoS One. 2016;11(6):e0157602. doi: 10.1371/journal.pone.0157602. PubMed PMID: 27309537; PMCID: PMC4911055.

Mosley RL, Benner EJ, Kadiu I, Thomas M, Boska MD, Hasan K, Laurie C, Gendelman HE. Neuroinflammation, Oxidative Stress and the Pathogenesis of Parkinson’s Disease. Clin Neurosci Res. 2006;6(5):261-81. doi: 10.1016/j.cnr.2006.09.006. PubMed PMID: 18060039; PMCID: PMC1831679.

Nolan YM, Sullivan AM, Toulouse A. Parkinson’s disease in the nuclear age of neuroinflammation. Trends Mol Med. 2013;19(3):187-96. doi: 10.1016/j.molmed.2012.12.003. PubMed PMID: 23318001.

Rushworth GF, Megson IL. Existing and potential therapeutic uses for N-acetylcysteine: the need for conversion to intracellular glutathione for antioxidant benefits. Pharmacol Ther. 2014;141(2):150-9. doi: 10.1016/j.pharmthera.2013.09.006. PubMed PMID: 24080471.

Taylor JM, Main BS, Crack PJ. Neuroinflammation and oxidative stress: co-conspirators in the pathology of Parkinson’s disease. Neurochem Int. 2013;62(5):803-19. doi: 10.1016/j.neuint.2012.12.016. PubMed PMID: 23291248.

Cover photo credit: https://s-media-cache-ak0.pinimg.com/originals/e8/33/ae/e833aeb408a432d419628c803bf14498.jpg

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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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Building Empathy for Parkinson’s

“When people talk, listen completely. Most people never listen.”  Ernest Hemingway

“To perceive is to suffer.”  Aristotle

Introduction: The loss of dopamine-producing neurons in the mid-brain leads to Parkinson’s disease, which usually presents with motor dysfunction of different degrees of progression from person-to-person.  This post explores the differences between empathy and sympathy, and describes a new device that allows one to actually experience a person-with-Parkinson’s tremor; surely providing much empathy from the experience.

“No one cares how much you know, until they know how much you care”  Theodore Roosevelt

A lesson learned from the classic rock opera “Tommy” by The Who: The plot of the 1969 rock opera “Tommy” begins with Tommy’s parents.  His father, Captain Walker, fought in World War II but it is assumed he died. However, Captain Walker is alive and returns home to his wife and Tommy. Believing her husband to be dead, Mrs. Walker has a new lover.  Captain Walker accidentally kills the lover, in the presence of Tommy. Tommy is traumatized by what he witnessed; he becomes catatonic.  Three musical examples: Go to the Mirror (listen here) Tommy sings “See me, me, feel me, touch me, heal me / See me, feel me, touch me, heal me.” Tommy’s father sings “I often wonder what he is feeling / Has he ever heard a word I’ve said? / Look at him in the mirror dreaming / What is happening in his head?” In Tommy Can You See Me? (listen here)  his mother sings “Tommy can you hear me? / Can you feel me near you? /  Tommy can you feel me / Can I help to cheer you.” In See Me, Feel Me (listen here) Tommy sings “See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / See me, feel me, touch me, heal me / Listening to you, I get the music / Gazing at you, I get the heat / Following you, I climb the mountain / I get excitement at your feet.” Hopefully, you can empathize, not sympathize, with Tommy and the life-struggles he encounters and overcomes in this rock opera.

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.” Milan Kundera

*Empathy vs. sympathy: Empathy means you have the ability to understand and share the feelings of another.  By contrast, sympathy means feelings of pity and sorrow for someone else’s misfortune (https://en.oxforddictionaries.com/definition/empathy). Yes, it sucks to have a chronically-progressing neurodegenerative disorder like Parkinson’s. But it could be worse, really.

Empathy.  What a great word.  Try to be empathetic to me; you don’t have to become one with me, just strive to understand how I’m feeling.  Our bond will surely strengthen.  You may not be able to exactly feel what I’m feeling, but just trying says much to you, your inner processing, the soul of your humanity.

Please don’t pity me, that reduces the feelings between us.  Please don’t have sorrow or sadness for me, it weakens our ties. If you give me sympathy, you’ll never truly be able to grasp the extent and meaning of my Parkinson’s.  Parkinson’s is not my friend; however, having your friendship and understanding (empathy) instead of your pity (sympathy) will give me strength and help me deal on a more positive-front with this unrelenting disorder.

*This post is dedicated to the first-year medical students at the UNC School of Medicine. On Friday, May 5, I had the privilege and honor of being presented as a person-with-Parkinson’s in our Neurologic Block. They asked very specific questions in their attempt to understand Parkinson’s and to learn how I am living with this disorder. It was clear that they were trying to follow the advice of Dr. William Osler who said “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”

“Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy.”  Dean Koontz

What is the life expectancy of someone diagnosed with Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and Huntington’s disease? These neurodegenerative disorders are listed in ranked order of how many people are affected from most to least, respectively. Alzheimer’s typically progress over 2 to 20 years, and individuals live for 8 to 10 years after the diagnosis.  People who have Parkinson’s usually have the same average life expectancy as people without the disease.  Life expectancy from ALS is usually at least 3-4 years. The time from diagnosis  of Huntington’s to death is about 10 to 30 years.  Each of these disorders is uniquely different and unsettling to me; but your empathy, not your sympathy, will truly help me sail my boat along the shoreline for many more years.  Accept me with ‘my unique medical issues’, try to understand it. Your empathy will add stability to my battle; just watch.

“Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the wrong. Sometime in life you will have been all of these.” Lloyd Shearer

A novel engineering device is empathy-producing to someone with Parkinson’s: The whole story is revealed from watching this video (click here). Klick Labs in Toronto, Canada, has created the SymPulse Tele-Empathy Device. This device is capable of mimicking and producing the tremors and involuntary movements of someone with Parkinson’s in people without Parkinson’s. The video is quite powerful, you immediately sense the empathy.

The SymPulse Tele-Empathy Device is based on digitized muscle activity from electromyograms of Parkinson’s patients. The signal is unique for each person with Parkinson’s. When the person without Parkinson’s receives this novel voltage pattern, their muscles will contract exactly as found in the person with Parkinson’s. Developing such a device shows the deviant nature of Parkinson’s to disrupt/distort normal neuro-muscular circuitry.

This device could be used to increase empathy in doctors and other caregivers. And it could enable family members and loved-ones the unique opportunity to experience the actual tremor/involuntary movements of their special person with Parkinson’s. Company officials note that most people wear the device for at most a couple of minutes; turn off the device and they return to normal. Remember, there is no off-on switch for the person with Parkinson’s.  I can only imagine empathy evolving from this device when used on someone without Parkinson’s.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” Henri J.M. Nouwen

Cover photo credit: gsmnp.com/wp-content/uploads/View-of-Smoky-Mountains-from-Oconaluftee.jpg

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

Cover photo credit: wallpapersdsc.net/wp-content/uploads/2016/09/Red-Tulips-Pictures.jpg

Composite: s-media-cache-ak0.pinimg.com/originals/40/4d/cd/404dcd87a0a3584e1d882ac6083baa3b.jpg

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http://www.charlottesgotalot.com/charlotte-skyline-5

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Life-Journey with Parkinson’s Blog (2016-2017): Recap of Quotes, Service, and Research

“Give your life a destination.” Debasish Mridha

“We’re all a beautiful, wonderful work in progress….Embrace the process!” Nanette Mathews

Précis: This post is a review of my public journey and life-steps with Parkinson’s in the 2nd year of the blog: i) rationale for the blog; ii) quotes/highlights from selected posts between March 2016-March 2017; iii) overview of service activities/events; iv) research and the 4th World Parkinson Congress; v) some of the people that make a difference in my life, and vi) six favorite cover photos from the past year.

Update on I’m Still Here: Journey and Life with Parkinson’s

A thought from Day 01: On March 9, 2015, I began my journey and Parkinson’s-life-story with this blog.  The first blog post ended with the following comment: “I am trying to live life well and authentically, and not be defined by my PD. With the help of family, friends, colleagues, and personal physicians, my goals are to stay positive and strive to keep focused on what matters the most…I am still here!”

Foundational themes of the blog:  The overall goal of the blog is divided between these topics: (a) to describe living with Parkinson’s (“Life Lessons”); (b) to present emerging medical strategies for dealing with Parkinson’s (“Medical Education”); (c) to provide a support mechanism for anyone with Parkinson’s or another neurodegenerative disorder (“Strategy for Living”); and (d) to give an overview of the scientific aspects of Parkinson’s (“Translating Science”).  I really appreciate your continual support, feedback, critiques, and suggestions for future topics (here’s an example): “I enjoy reading your informative blog posts. I believe that addressing the many frustrations of living with Parkinson’s as you are doing with such “matter of factness” and then with a plan of action, must be inspiring to others dealing with the same.  All the while working so hard to maintain your positive outlook…the mental exercise! The other side of the overall challenge in this competition with Parkinson’s Disease to live your present life fully.” If there are some specific topics/life aspects of Parkinson’s you’d like for me to research and present here, please send me the topic(s).  If there is some format change in presentation you’d like to see to improve the readability of future posts, please send me a suggestion.

Quotes and highlights from selected posts from March 2016-March 2017:

  1. “As a long-time educator, I feel that my daily lesson plans are partly derived from my life-experiences and that my syllabus is the sum of my life’s journey.”  From Parkinson’s and the Positivity of Michael J. Fox (click here to read post).
  2. “A regular aerobic exercise program likely helps to promote the appropriate conditions for the injured brain to undergo neuroplasticity.”  From Déjà Vu and Neuroplasticity in Parkinson’s (click here to read post).
  3. We are identified by our characteristic symptoms of our unwanted companion named Parkinson’s. We are all in this together, united by our disorder; held together by those who love and care for us.” From Update on I’m Still Here: Life with Parkinson’s (click here to read post).
  4. While we wait for the potion that slows progression, we exercise and remain hopeful. While we live with a neurodegenerative disorder, we strive to remove the label and we stay positive.” From Parkinson’s Treatment With Dopamine Agonist, Complementary and Alternative Medicine (CAM), and Exercise(click here to read post).
  5. Living with Parkinson’s requires you to adapt to its subtle but progressive changes over a long period of time; you need to remain hopeful for many different things.” From Chapter 1: A Parkinson’s Reading Companion on Hope (click here to read post).
  6. “This disorder robs you physically of mobility and flexibility, so maintaining physical strength is really important. This disorder robs you emotionally and this deficit is bigger than the physical defects; thus, to thrive with Parkinson’s demands several character strengths.” From Chapter 3: A Parkinson’s Reading Companion on Strength (click here to read post).
  7. “Life with Parkinson’s is best lived in the current moment without dwelling on the past and dreading the future.”  From Chapter 8: A Parkinson’s Reading Companion on Mindfulness (click here to read post).
  8. “The journey with Parkinson’s requires effort, teamwork, awareness, and a heart-fueled positive attitude to keep going.”  From Chapter 9: A Parkinson’s Reading Companion on Journey (click here to read post).
  9. “Consider your disorder, you must be able to embrace this unexpected turn in your life and manage the best you can. Personalize your disorder and understand its nuances on you; then you will be able to successfully navigate life in its daily presence.” From 9 Life Lessons from 2016 Commencement Speeches (click here to read post).
  10. “I truly believe that the effort most people are using to handle their disorder puts them in a healthier and better lifestyle to manage their symptoms. An emerging predominate picture of Parkinson’s today is a person striving to live strongly.” From The Evolving Portrait of Parkinson’s (click here to read post).
  11. “Believe in Life in the Presence of Parkinson’s”: Every thought expressed here matters to me (click here to read post).
  12. “Your home may change many times over the coming years. Let your heart tell you where your home is.” From 2016 Whitehead Lecture: Advice, Life Stories and the Journey with Parkinson’s (click here to read post).
  13.  “Here’s a simple mindfulness experience/moment: simply be aware of the steam leaving your morning cup of coffee/tea, clear your immediate thoughts, then sip, focus and savor this moment.”  From 7 Healthy Habits For Your Brain (click here to read post).
  14. “You’ve played 17 holes of golf, and you approach the 18th hole to finish the round. This is a long par three with a lake between you on the tee box and the putting surface.  Your three golf buddies have already safely hit their balls over the lake;  you  launch the ball over the water and safely onto the green (this is a big deal).  Without Parkinson’s, your facial expression and your exuberance are so obvious.  With Parkinson’s, your joy and exuberance are still over-flowing inwardly yet it is displayed in a more muted manner.”  From The Mask of Parkinson’s (click here to read post).
  15. “We must remain hopeful that advances in Parkinson’s treatment are being made and that our understanding of the science of Parkinson’s is continuing to evolve.”  From 2016: The Year in Parkinson’s (click here to read post).
  16. “Since receiving my Parkinson’s diagnosis, my opinion of exercise has changed.  With Parkinson’s, I’m now exercising as if my life depends on it.”  From 9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s (click here to read post).

Service and research:
Service- I was most fortunate to be able to participate in 2 ways for the 4th World Parkinson Congress (WPC), first as a member of the Communications Committee, World Parkinson Coalition; second, as the Co-Editor, Daily Parkinson eNewspaper for the 4th WPC.  And it gave me an opportunity to work with the very talented Eli Pollard (Executive Director WPC).  A truly amazing Editorial Board was assembled of PD advocates, researchers, experts, PwP, and just a superb group of people devoted to Parkinson’s (click here to read the Editorial Board Biographical Sketches).   This was a meaningful experience to have worked with the Editorial Board, a real honor.

Being part of the Planning Committee, Moving Day NC Triangle, headed up by Jessica Shurer, was such fun.  This was my first year on the committee; however, it was my second year to organize a team for Moving Day.

PWR!Moves® Instructor Workshop Certificate. Spent a weekend in Greenville, SC to participate and get certified in PWR!Moves (PWR = Parkinson Wellness Recovery).  To sum it up is easy, truly an amazing event.  I was fortunate to have an experienced-talented instructor and a group of personal trainers committed to working with PwP (click here to read the blog post describing the PWR! experience). Although I was happy to contribute as the person-with-Parkinson’s and go through the exercise routines for everyone, it was even more fun getting trained and certified in PWR!Moves.

Research-  One of the new directions in my life is a shift in the focus of my research away from hematology and to Parkinson’s.  I keep asking myself, why? and keep answering why not!  The process is just like everything else related to research and grant applications; you read, plan, write, submit, and wait.  However, I am pleased to say that CJ’s fellowship entitled “Localization of Proteases and their Inhibitors in Parkinson’s Disease” was funded by UNC-CH.  It’s a start…we begin gathering data next month.  And I am so proud of CJ for seeking (and obtaining) funding to get us started in the science of Parkinson’s.

“Life is like a roller-coaster with thrills, chills, and a sigh of relief.” Susan Bennett

The people that make a difference in my life: Collectively, everyone here gives me strength each and every day of my journey with this disorder.

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Above- Barbara, the best care-partner/best friend/best everything; I can’t imagine being here and doing all of this without your never-ending love and support.

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Top and bottom right panels above- lab/research group [especially important are CJ (currently working in the lab) and Mac (a long-time collaborator) and Chantelle, Savannah, and Jasmine (no longer working in the lab but still are great friends and vital to our success)]; middle panel- nothing more valuable than family, with my sisters (Tina and Kitty), and bottom left panel- my all-important golf buddies [Walter, Kim, Nigel (not pictured) and John].

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Panels above- undergraduate classes from SP ’16, FA’ 16 and SP ’17 inspire me every day to keep teaching and fuel my inner-core to keep going another year.

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Above panels- medical students (all 180 students/class) enrich my life and challenge me to keep working hard and stay happy.

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Besides attending a Parkinson’s Congress, getting certified in PWR!, publishing a book, and walking for Parkinson’s; it was all made easier by my PWR! Physical Therapist and gifted teacher Jennifer (top right panel), expert medical guidance from my Neurologist Dr. Roque (middle panel), Parkinson’s-education-awareness from the best movement disorder center social-worker Jessica (bottom middle panel), perpetual energy and role model of a PwP-advocate Lisa (bottom right panel), and Johanna and Katie (not pictured above) who make my day-job such a joyful experience.  And I apologize to many others who are not pictured here because you do really matter to me.

6 favorite cover photos from the past year (links to photos at the end):

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Thank you! Thank you for your support during the second year of my journey with this blog. As always, live decisively, be positive, stay focused, remain persistent and stay you.

“I want to be in the arena. I want to be brave with my life. And when we make the choice to dare greatly, we sign up to get our asses kicked. We can choose courage or we can choose comfort, but we can’t have both. Not at the same time. Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it’s our greatest measure of courage.”  Brené Brown, Rising Strong

Noted added in proof: For a day or so, a preliminary version of this post appeared in 200 Years Ago James Parkinson published “An Essay On The Shaking Palsy” (click here to view).  Together, this combined post was substantially longer than my usual blog post.  Therefore, I separated them and decided to present this year-end-review in an expanded format.

Cover photo credit: farm4.staticflickr.com/3953/15575910318_ec35ebb523_b.jpg

Photo credits for the 6 favorite cover photos for 2016-2017: top left http://epod.usra.edu/.a/6a0105371bb32c970b015438c5312a970c-pi;  top right: : http://vb3lk7eb4t.search.serialssolutions.com/?V=1.0&L=VB3LK7EB4T&S=JCs&C=TC0001578421&T=marc ; middle left wallpaper-crocus-flower-buds-violet-primrose-snow-spring-flowers.jpg; middle right : http://az616578.vo.msecnd.net/files/2016/03/19/635940149667803087959444186_6359344127228967891155060939_nature-grass-flowers-spring-2780.jpg ; bottom left : http://www.beaconhouseinnb-b.com/wp-content/uploads/dawn-at-spring-lake-beach-bill-mckim.jpg ; bottom right : http://www.rarewallpapers.com/beaches/lifeguard-station-10678

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Parkinson’s Awareness Month: Veterans Health Administration PD Video Series

“My motto was always to keep swinging. Whether I was in a slump or feeling badly or having trouble off the field, the only thing to do was keep swinging.” Hank Aaron

“Nothing worth having comes easy.” Theodore Roosevelt

Introduction: Several years ago, the Veterans Health Administration produced videos to educate/inform our veterans about Parkinson’s disease.   For more information, read about the VA Core Values and Mission Statement (click here); it is an admirable sentiment.

As we are living longer, so too are our veterans. Some service-related-experiences may have predisposed some of them to develop Parkinson’s.  All of these videos are available on YouTube.  However, since this is Parkinson’s awareness month, putting them all together might benefit others to better understand Parkinson’s.   I definitely learned something from watching these videos, they were all outstanding.

Each individual video features a veteran (frequently their care-partner too) who agreed to be videotaped (having done this type of interview myself, it is not an easy experience); I admire their courage to participate and to help educate all of us. Furthermore, the VA clinical and support staff were passionate and compassionate about their roles in dealing with our veterans with Parkinson’s.

“Losing the possibility of something is the exact same thing as losing hope and without hope nothing can survive.” Mark Z. Danielewski

Veterans Health Administration – My Parkinson’s Story:
My Parkinson’s Story:
Early Parkinson’s Disease [click here for video]

My Parkinson’s Story: Thinking and Memory Problems with Parkinson Disease [click here for video]

My Parkinson’s Story: Medications [click here for video] 

My Parkinson’s Story: Dyskinesias [click here for video] 

My Parkinson’s Story: Atypical [click here for video] 

My Parkinson’s Story: Driving [click here for video]

My Parkinson’s Story: Sleep Problems and Parkinson’s Disease [click here for video] 

My Parkinson’s Story: Genetics [click here for video] 

My Parkinson’s Story: Exercise [click here for video] 

My Parkinson’s Story: Environmental Exposure [click here for video]

My Parkinson’s Story: The Impact of Depression in Parkinson’s Disease [click here for video] 

My Parkinson’s Story: Impact of Falls and Parkinson’s Disease [click here for video]

My Parkinson’s Story: The Caregiver [click here for video] 

My Parkinson’s Story: Deep Brain Stimulation and Parkinson Disease [click here for video]

My Parkinson’s Story: Hospitalization [click here for video] 

My Parkinson’s Story: Speech and Swallowing [click here for video] 

My Parkinson’s Story: Advanced Parkinsons [click here for video]

“Not I, nor anyone else can travel that road for you. You must travel it by yourself. It is not far. It is within reach. Perhaps you have been on it since you were born, and did not know. Perhaps it is everywhere – on water and land.” Walt Whitman

“We can’t equate spending on veterans with spending on defense. Our strength is not just in the size of our defense budget, but in the size of our hearts, in the size of our gratitude for their sacrifice. And that’s not just measured in words or gestures.” Jennifer Granholm

Cover Photo Credit: http://wallpapersafari.com/w/Fy0h6Q/