Tag Archives: Life stories

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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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/

The Evolving Portrait of Parkinson’s

“Aging is not lost youth but a new stage of opportunity and strength.” Betty Friedane

 “If we own the story then we can write the ending.” Brené Brown

Précis:  To showcase the amazing art/photography/videography of Anders M. Leines who lives in Norway, which gives me the opportunity to voice an opinion about the emerging picture/image of Parkinson’s today.

World Parkinson Congress (WPC) Promo Video: Please watch this video, it’s powerful; “This is Parkinson’s” a WPC Promo from Anders M. Leines (either view it below or click here).  Anders is a videographer and cameraman who works in Oslo, Norway; he’s been diagnosed with young onset Parkinson’s. One of his goals is to change the view about how Parkinson’s is perceived by the world.  One look at his video reinforces this notion.  A very nice article about Mr. Leines was recently posted in “Parkinson’s Life” (click here to read this story).  Anders also shares his story with his own blog “This is Parkinson`s” – The Exhibition.  The pictures, the script, and the music accompanying the WPC 2016 Promo by Mr. Leines says more in 1 min 42 sec about Parkinson’s than someone could likely summarize by writing a blog post, but nonetheless I’m going to try.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve

The Historical Perception of Parkinson’s: Sir Richard Gowers, in 1886, used this drawing (below left panel) to depict a person with Parkinson’s. When you perform a Google search for a ‘picture of Parkinson’s disease’, these sorts of images are still very prevalent. Yes, the average age of someone with Parkinson’s is 60 years of age and older. And yes, Sir Gowers does accurately show the Cardinal signs of Parkinson’s: tremor, rigidity from muscle stiffness, bradykinesia (slowness of movement), postural instability, and masking (reduced facial expression).  Furthermore, Dr. Charcot’s  drawings, from 1888, also depict a typical Parkinson’s patient compared to an atypical patient with Parkinson’s (bottom right panel).  While these drawings are accurate, these images portray to many who see them that all people-with-Parkinson’s must look and act like this. 

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“In all human affairs there are efforts, and there are results, and the strength of the effort is the measure of the result.” James Allen

The Emerging Perception of Parkinson’s: The reality today is that available treatment strategy and approach to life for someone with Parkinson’s are very different than what was possible for the people portrayed by Sir Gowers and Dr. Charcot. Today, we have well-trained neurologists that are specialists in movement disorders. We have a growing appreciation and understanding of the pathology and biology of Parkinson’s disease.  We have learned about vital lifestyle changes needed to thrive in the presence of this disorder. We have a growing list of therapies [both traditional and complementary and alternative medicine (CAM)] to treat Parkinson’s; we even have deep brain surgery (this surgical technique itself is undergoing new advances and is further evolving in its attempt to control/modify symptoms). We have an increased awareness of the importance of exercise to try to slow progression of this disorder. There is clearly a subset of people with Parkinson’s that present at an earlier age than 60 years old (and this is what Mr. Leines and his exhibition is highlighting).   No doubt, we are living longer and we are likely healthier than someone from the 1880’s; however, that also implies we’re living more years with our Parkinson’s.

This is not saying that Parkinson’s today is either a benign or a tame disease; in fact, it’s an insidious disorder.  Having Parkinson’s is like trying to get rid of cockroaches in your house.  You’ve done all you can to eliminate the roaches from your home, and you don’t see them for weeks; subsequently one day, they’re back. Likewise, Parkinson’s creeps around in the background of your daily life by stealthily altering physical/movement functions, by slowly uncoupling your crucial autonomic nervous system, and surreptitiously in ~50% of people with the disorder, they can develop psychotic tendencies.  The image of Parkinson’s today is clearly evolving due to improved treatment, better understanding of the disorder itself, and improved strategies for living with it; however, under any guise it is still a disagreeable disorder.

“With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose.” Wayne Dyer

A Change is Happening in Our Perspective of Parkinson’s Today:  It is my belief that the perception of Parkinson’s today has changed and is becoming much different than the historical views as described above. 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. They’ve embraced the appropriate lifestyle, and they are trying their hardest to not become as depicted by the images from the 1800’s. When you do a Google search for ‘images of Parkinson’s disease 2016’, you will likely find more positive and dynamic pictures of people similar to those portrayed by Mr. Leines.

“Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity.” Louis Pasteur

A Personal Perspective of Parkinson’s Today: With the “This is Parkinson’s” video from Anders M. Leines as an inspiration, I’ve included two sets of pictures of my life with Parkinson’s (photos are below). If my disorder fully progresses, and it is a progressive neurodegenerative disorder, in advanced age (I’m currently 62 years old) I may possibly appear like the drawings above from Sir Gowers and Dr. Charcot. However, as a research scientist, I truly believe in the words of Dr. Claude Levi-Strauss who said “The scientist is not a person who gives the right answers, he is one who asks the right questions.”  I am trying to improve my own knowledge about Parkinson’s; after all, there are still so many questions I want to ask, there are so many new scientific advances that I need to better understand, and there are some emerging treatment strategies that I’d be willing to consider in the future. In other words, Parkinson’s is a reluctant and unwelcome visitor in my body and I’m doing as much as I can to manage the disorder.

With substantial effort, I’m going to do all I can to resist progression; I’m going to stay hopeful, be positive, and remain persistent for many years to come. Importantly, I will take time to stretch every few hours and really make an effort to exercise every day. I will try harder to get an adequate amount of sleep every night.  I am also trying to be mindful and live within the moment by not fretting about what the future could bring.

Thus, this is what I consider to be true of myself (many other people with Parkinson’s would also fit this description): I’m a healthy person that just happens to have Parkinson’s. As I’ve said before, we both have much left to accomplish. We are both still here. Stay focused and stay hopeful.

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“We live in a time when the words impossible and unsolvable are no longer part of the scientific community’s vocabulary. Each day we move closer to trials that will not just minimize the symptoms of disease and injury but eliminate them.” Christopher Reeve

Cover photo credit: http://epod.usra.edu/.a/6a0105371bb32c970b015438c5312a970c-pi

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Catching Up, Life-Stories, and Future Posts in Journey With Parkinson’s

“One isn’t necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can’t be kind, true, merciful, generous, or honest.” Maya Angelou

“Life is not a problem to be solved, but an experience to be had.” Alan Watts

Don’t You Get The Summer Off?: My favorite check out guy at Whole Foods asked me recently, “Don’t you get the summer off from teaching medical students?” And one of my  weekend golf buddies routinely jokes about the fact that I’m in academics and says “I only have to work nine hours a week.”  In reality, being at a medical school has always meant to me to work essentially everyday. As long as my brain is functioning, I will continue to follow this lifestyle.  I have spent the summer getting ready for the fall semester, catching up on my research in the laboratory, and doing all the things I neglected to do during the school year.  Yes, in the summer I do take more opportunity to play golf during the week; however, I make up the hours working either early in the morning or late in the evening.   I realized today that I had not posted a blog in over a month; I have been busy and just not had time to sit at my computer to plan, research, think and write. The goal of this current blog is meant to be an update including future planned posts.

“What I have learned from life is to make the most of what you have got.” Stephen Hawking

Letters of Recommendation:  One of the obligations of a university professor that teaches undergraduate students is to be willing and able to write supportive letters of recommendation (well, that’s my opinion).  Many of the students I’ve taught in the past year are applying to medical school, dental school, graduate school, physician assistant school, pharmacy school, nursing school, and postbaccalaureate programs.   Several of my former students are also reapplying to some of the same programs. In a typical year, I will write 40 to 50 letters of recommendation.  And of course, the goal is to write a uniquely different letter for each student; to describe their key highlights, give evidence of their potential, and to find the most appropriate descriptive adjectives for each person.  Thus, each letter becomes its own journey from my perspective, and it takes time and considerable attention to compose such a supportive type of letter. And writing for me is always a struggle, because I have to be in the right mental  frame of mind to compose any document. My goal for the rest of  July through August is to try and write one or two letters of recommendations every couple of days.

“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained.” Marie Curie

Parkinson’s Empowerment Symposium: Options for Care and Living Well for Patients and Families (June 18, 2016, Asheville, North Carolina): The UNC Movement Disorders Center hosted a 1-day symposium on Parkinson’s. The focus was described as follows: “This educational program is intended for individuals diagnosed with Parkinson’s disease and/or PD care partners, with the goals of reviewing treatment and therapy options, discussing effective coping, and providing a space to ask questions.” Seeking refuge from the summer heat, we combined a fun weekend in the cool Smoky mountains in the wonderfully eclectic city of Asheville with great cajun food for dinner, cool dry mountain air to play 18-holes of golf and just relaxing fun; we also attended the Parkinson’s symposium (see pictures below; the tattoo shop story will be reserved for a future blog post).  Being around a large group of people with Parkinson’s was inspiring and motivated me further to work managing/dealing with my Parkinson’s.  All-in-all, a great experience.

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

Awakenings:  Awakenings is a 1973 book by Oliver Sacks; he found beneficial effects of the drug L-Dopa when given to catatonic patients with encephalitis lethargica. Awakenings is also a 1990 American movie on the same topic staring Robin Williams and Robert De Niro. Use of L-Dopa ‘awakened’ the patients after years of being catatonic and now they are confronted with renewed life many years beyond their comprehension. The idea behind the treatment came from the success of using L-Dopa for treating Parkinson’s.

For the past few months, I’ve been feeling more stiffness, moving less-well and generally had a slight foreboding sense of dread.  My Neurologist, during my recent visit, decided that my treatment strategy had become less effective and we needed to ‘add-on’ something.  After several minutes of options and dosing of various compounds, I made the decision to move to Sinemet (the generic formula of Carbidopa-Levodopa 25-100 tablets); in addition to the dopamine agonists (Ropinirole extended release tablets and  Rotigotine transdermal patch).  My ‘awakening’ moment happened with the first small dose of the generic Sinemet. Absolutely felt better, less stiff, more flexible, and totally different.  I am excited to see what the future brings in continuing my new group of drugs; ready to keep exercising with renewed hope and ready to keep the rest of my life moving more efficiently.  So far the addition of the generic Sinemet has been simply positive and my own awakening.

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” Bernice Johnson Reagon

Coming Attractions: There are 4 categories to posts for this blog: i) “Life Lessons” (describe living with Parkinson’s); ii) “Medical Education” (report emerging medical strategies for treating/managing/curing Parkinson’s); iii) “Strategy for Living” (support mechanism to anyone with Parkinson’s or other neurodegenerative disorder); and iv) “Translating Science” (educate by presenting scientific aspects of Parkinson’s).  Listed below are the posts that are coming later this summer (my hope/plan is to get ~2 posts finished/week):

Medical Education
Immune System and Parkinson’s (Part 2): Role of Innate Immunity.

Anatomy of Parkinson’s.
Traumatic Brain Injury (TBI) Associated with Increased Risk of Parkinson’s but not of Alzheimer’s.
Update on the Anti-leukemia Drug Nilotinib and Treatment of Parkinson’s.

Strategy for Living
Parkinson’s Wellness Recovery (PWR!) Exercise Program and Neuroplasticity.
Part 5: Journey to Parkinson’s and Transradial Cardiac Catheterization.

Part 4: Journey to Parkinson’s and Electromyography.
Part 3: Journey to Parkinson’s and Polysomnography.
Part 2: Journey to Parkinson’s and Magnetic Resonance Imaging.

Life Lessons
New Face of Parkinson’s and the World Parkinson Congress.
A Simple Plan.
Where Were You When?
Love in the Presence of Parkinson’s.

Translating Science
c-Abl and α-Synuclein Interactions Linked to the Development of Parkinson’s.
Less Clueless About Parkinson’s.
Genetic Profiling of Parkinson’s Disease and Parkinson’s Dementia.
Arginase in Alzheimer’s: A New Hope.
Deletion of Huntingtin Gene in Adult Mice Suggests a New Treatment Strategy for Huntington’s.
NAD+  is Neuroprotective in a Drosophila Model of Parkinson’s.

“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://www.pixelstalk.net/wp-content/uploads/2016/05/HD-Summer-Desktop-Wallpaper.jpg

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

“Let me not pray to be sheltered from dangers, but to be fearless in facing them.
Let me not beg for the stilling of my pain, but for the heart to conquer it.” Rabindranath Tagore

“Everything you need to know you have learned through your journey.” Paulo Coelho

Introduction: A year ago this month, my journey started with this blog entitled “Journey with Parkinson’s”. A year ago this month, I got the dopamine tattoo on my arm.  And this month is the two year anniversary of getting my diagnosis of Parkinson’s from my Neurologist. This post re-visits Parkinson’s and reviews the 1st year  of the blog; and what I’ve learned so far from the experience.

“Live in the moment, enjoy the day, make the most of what you have.” Michael J. Fox

From the Beginning (song title by Emerson, Lake & Palmer from 1972): The disorder was first described as the “shaking palsy” in 1817 by James Parkinson, for whom it was named. Parkinson’s is a neurodegenerative disorder. Parkinson’s usually presents as a movement disorder, which is a slow progressive loss of motor coordination, gait disturbance, slowness of movement, rigidity, and tremor.  Parkinson’s can also include cognitive/psychological impairments. ~170 people/day are diagnosed with Parkinson’s in the USA; resulting in ~1 million people living here with this disorder.  Parkinson’s follows only Alzheimer’s in number of people living with a neurodegenerative disorder.

“Instead of fighting with Parkinson’s and it’s debilitating symptoms, patients, and their families are better served to find new ways to live a full life.” Amy Donaldson

And it makes me wonder (song lyrics from Stairway to Heaven by Led Zeppelin from 1971): 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”).  Listed below are the most viewed blog posts from these 4 categories from March 2015-March 2016 (statistics provided by WordPress).

Life Lessons (top 4 viewed posts):
I’m Still Here: Life with Parkinson’s;
Positively Parkinson’s;
Hope Resides Within the Adversity of Parkinson’s;
Imagine Yourself Then, Imagine Yourself Now With Parkinson’s.

Medical Education (top 4 viewed posts):
A Comparison of Parkinson’s to Alzheimer’s;
Isradipine: Shutting the Door on Calcium Channels to Slow the Progression of Parkinson’s?;
Potential New Parkinson’s Drug Highlight: the Leukemia Drug Nilotinib;
Anti-malaria Drugs Target Nurr1 For Possible Parkinson’s Therapeutics.

Strategy for Living (top 4 viewed posts):
Meditation, Yoga, and Exercise in Parkinson’s;
Believe In Big Movements Of LSVT BIG Physical Therapy For Parkinson’s;
Parkinson mPower iPhone Application: Tracking Symptoms in Real Time;
Happiness and Parkinson’s: 10 Simple Suggestions to Make Your Life Happier.

Translating Science (top 4 viewed posts):
The Alpha-Synuclein Story In Parkinson’s;
Dopamine: A Symbol of Hope;
Purple Haze of Parkinson’s: How Dopamine Works;
Immune System and Parkinson’s (Part 1): The Brain and Immune System are Connected.

3 of Frank’s favorite blog posts not in the ranked lists above:
Air Force Core Values and A Life Lived;
Contentment, Gratitude, and Mindfulness;
How Do You Feel When You Wake Up Each Morning.

“When a friend or family member is diagnosed with Parkinson’s, there are many battles that need to be tackled. Most importantly, support, love and understanding are imperative for the sufferer, the carer and the families…. Do a lot of encouraging and try your hardest to continue on in a normal way.” Gabriella Rogers

We have no choice but to carry on (song lyrics from Carry On / Questions by Crosby, Stills, Nash & Young from 1969): Researching the science/medical advances of Parkinson’s is done in the evenings and on the weekends. Making time to write each blog post is now an ever present priority; having published 66 posts (and ~10 in draft format) in the first year.  However, I stand in awe at how prolific so many Parkinson’s bloggers are both in their zest of story-telling and in their support for so many people with (or without) Parkinson’s; I thank you all.  Getting feedback (critiques and notes) has provided me a lot of validation. Here are 3 critiques that made me smile; they definitely encouraged me to keep writing:

Leucine-rich Repeat Kinase 2 (LRRK2) Is A Possible Target For Therapy In Parkinson’s: “The picture and lead in quotes flow with continuity as per the article. Very hopeful research. As you said, a technical and informative blog.  Definitely not easily understood by the lay reader but still infused with hope, which all readers can relate to.”

A Patient’s Tale: “How very courageous of you to be writing about this online and to share your story with the students of the medical school. Even in what I am sure is one of the most trying times of your life you are still the consummate educator- telling us what it feels like to be a patient so we can be more attuned to what we need to know and do for our patients…I have been thinking about mentorship very much recently and what a profound impact it has had on me and my career.  I thank you immeasurably for being a champion for me along my journey to becoming a doctor.  The impact that you have had on the general Carolina community and the UNC SOM community is huge.  You’ve inspired us to become scientists, doctors, nurses, educators, and mentors to others.  And you continue to do this. Thank you. I hope for continued wellness, more good days than bad, and great friends and family to make good days and bad days a little better.”

Hope, Courage, Persistence, Positivity, Mindfulness, And The Journey: “I like your phrase ‘… our misfortune named Parkinson’s’. Misfortune is such a poignant, realistic and normalizing word in relationship to Parkinson’s.  Your more personal stories of life with Parkinson’s speak to those affected as well as those living without this particular ‘misfortune’ yet still your inspirational writings are inclusive and relevant to other of life’s challenges. I absolutely love this quote: ‘Do not confuse my bad days as a sign of weakness. Those are actually the days I’m fighting my hardest.’ So so true. And this original statement ‘Staying persistent is creating new options, and it continually requires the courage of one’s convictions.’ Like the connection between persistence and creating new options. Otherwise persistence is static, stoic. But this infers creativity and advancement. Your creative imagery: ‘Each day we wear a cape on our back labeled with the letters PD (Parkinson’s Disease).  Each day we bring a positive reaction to handle our symptoms, I am convinced we begin to fade those letters;’ There is such empowerment in that concept. Hope more and more men and women living with PD get to read this.”

“Never confuse a single defeat with a final defeat.” F. Scott Fitzgerald

“If you fell down yesterday, stand up today.” H.G. Wells

Don’t Give Up (song title from Peter Gabriel from 1987):  For those of us with Parkinson’s, our daily routine will be like walking at the beach leaning into a strong head-wind.  If we fall, we must get back up again and keep walking. Our disorder is somewhat belittling, full of obstacles; but it doesn’t define our existence. Our lives can still be meaningful in the backdrop of Parkinson’s; thus, if we slip on the sand, we stabilize and just keep going. Our chemical dependence requires daily dosing to maintain/achieve relatively normal body function, which means being in tune with your physical self allows you to adapt and accept your disorder. Don’t give up.

It’s okay to take two steps forward and one step backwards, because the net result is that you’re moving forward. It’s okay to be moving slower and stiffer than before; your daily exercise, your daily stretching, your daily relaxing and mindfulness are all helping relieve the symptoms. The medical advances in the arena of Parkinson’s research are incremental in their scope but hopefully show potential to limit disease progression (time will tell).  So please stay strong, stay resilient, stay positive, stay focused, stay educated, and stay hopeful. 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. Don’t give up, please.

Thank you for your support during this first year of my journey with a blog. I look forward to learning/writing more about Parkinson’s in the second year. We are all uniquely ourselves, yet we’re all capable of being strong and resisting as well as we can the negative impact of our disorder. In closing,  live decisively in the forward direction, stay focused, be persistent and stay you. Please, don’t give up.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” Brené Brown

Cover photo credit: wallpaper-crocus-flower-buds-violet-primrose-snow-spring-flowers.jpg

The Song of the Journey Ahead is About Living Authentically in the Presence of Parkinson’s

“Choosing one path means abandoning others – if you try to follow every possible path you will end up following none.” Paulo Coelho

“An awareness of one’s mortality can lead you to wake up and live an authentic, meaningful life.” Bernie Siegel

A beginning: ~7 people/hour are diagnosed with Parkinson’s in the USA; resulting in ~1 million people living here with this disorder.  Parkinson’s ranks #2 in the neurodegenerative disorders, only behind Alzheimer’s.  I joined the group of those living with Parkinson’s 18 months ago; my Neurologist commented that it had likely started ~3 years earlier (due to my description of evolving symptoms).

“People with Parkinson’s are not some weird people on the edge of human experience.” Helen Mirren

“Parkinson’s is a slow but inevitable process. It’s hard living with it on a daily basis. The difficulty facing people with it is that they never quite know ‘Can I or can’t I do this today?'” Helen Mirren

The journey continues: J.R.R. Tolkien said “Little by little, one travels far”; indeed over the past 18-24 months I’ve had an incredible journey.  The “Journey with Parkinson’s” blog started 5 months ago (March 9, 2015), and this is the 50th post. There are 4 broad goals to this blog: to describe living with Parkinson’s; educate by presenting scientific aspects of Parkinson’s; describe emerging medical strategies for treating/managing/curing Parkinson’s; and as a support mechanism to anyone with Parkinson’s or any of the neurodegenerative disorders.  Getting feedback (critiques and notes) has provided me a lot of validation and valuable information (thank you!).

‘Though the road’s been rocky it sure feels good to me.” Bob Marley

It is good to have an end to journey toward, but it is the journey that matters in the end.” Ursula K. Le Guin

“The journey is the treasure.”  Lloyd Alexander

Living with Parkinson’s:
Living with a slowly changing disorder like Parkinson’s is frustrating.  You can remember the days of smooth-seamless body movements; however, your body has none of those memories.
Living as you are re-learning how to walk again, to hit a golf ball again, and to sign your name again; every hour of every day.
Living with Parkinson’s says you must accept and deal with these annoying symptoms; you don’t have to be defined by it.
Living with Parkinson’s now means you need courage, commitment, hope, and a strong will to fight and try to slow progression; remember, your life’s still happening.
Living with Parkinson’s argues that you acknowledge its presence; by remaining persistent you can still accomplish the majority of your current/future goals.
Living with Parkinson’s is an awkward balance between functional and dysfunctional movements; the good news is for most of us our cognitive function remains intact.
Living with Parkinson’s usually means taking medicine/supplements at carefully spaced-intervals; it may be a nuisance but life is better on this timed-schedule.
Living with Parkinson’s implies that this slowly and subtly changing disorder will alter your life; stay positive and focus on enjoying the current moments, mindful that your life can remain full, meaningful, fulfilling.
Living with Parkinson’s will come with adversity but you can choose to live decisively.
Living with Parkinson’s offers us a mandate to remain authentic and live-out our lives genuinely; you still are significant.

“Authenticity is a collection of choices that we have to make every day. It’s about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.” Brené Brown

“The authentic self is the soul made visible.” Sarah Ban Breathnach

“It is my intention to live an authentic life of compassion and integrity and action.” Zachary Quint

The song of the journey ahead is about living authentically in the presence of Parkinson’s:
I never invited Parkinson’s to enter my life; I now acknowledge its existence in me.
I never expected to host a Parkinson’s blog; it’s now part of my life’s written word.
There’s time left in my life to sing.
There’s time left in my life to live authentically.
There’s time left in my life to love decisively.
There’s time left in my life to focus on medical education/research.
There’s time left in my life to live forward and deal with this disorder.
There’s time left in your life to sing, live, love, work, manage your disorder.
There’s time left in your life to accomplish much, if not all.
Remain hopeful, mindful, positive, courageous, and persistent.
Let our journey continue.

“The truth is: Belonging starts with self-acceptance. Your level of belonging, in fact, can never be greater than your level of self-acceptance, because believing that you’re enough is what gives you the courage to be authentic, vulnerable and imperfect.” Brené Brown

“The greatest thing in this world is not so much where we stand as in what direction we are moving.”  Johann Wolfgang von Goethe

Air Force Core Values And A Life Lived

“Integrity has no need of rules.” Albert Camus

“You are what you do, not what you say you’ll do.”  C.G. Jung

“Do ordinary things extraordinarily well.” Gregg Harris

USAF (United States Air Force) Core Values and Growing Up: “Integrity, service and excellence.” These three words represent the core values of the USAF, which reminds me of the early years of my life growing up as an “Air Force Brat” (https://en.wikipedia.org/wiki/Military_brat_%28U.S._subculture%29 ).

Each summer for the past decade, my sisters and I meet at the Naval Air Station (NAS) Pensacola FL (U.S. Navy) for a family reunion. Each morning at NAS Pensacola, you are greeted with “First Call” (Reveille) followed by the playing of the National Anthem.  Everyone stops while the music plays; you face toward the flag if you can see it and stand at parade rest. If the flag is not within sight, then you face toward the music. At the end of the day, “Retreat” plays.  Throughout the day, jets and planes are constantly taking off and landing, sometimes in single file, other times, side-by-side. Exciting. Inspiring. Proud.  And this all brings back vivid memories of growing up, not on a Navy Air Station, but on an Air Force Base being “Colonel Church’s son”.  As I reflect here, the USAF Core Values ring true and strong to a young boy with a father in the USAF (below are a few pictures).

USAF.2.150722My formative years: (top left) Col. Church, my father; (top middle) sitting on my dad’s lap wearing a hat, to my right are my two sisters; (top right) meeting the Base Commander; (bottom left) baseball (I’m second on the left in the row kneeling); (bottom middle) golf tournament (I’m second from the right); and (bottom right) parents dancing.

Integrity: The earliest positive influence on my life was my dad; and it all started with integrity through his actions. A fundamental cornerstone of my dad’s influence on me was to always be honest. To be honest with all others and to be honest with yourself. Almost everything I did growing up required teamwork and bringing integrity provided strength to each team and to me.  Staying true to your own word when no one is watching is always the right way. Your integrity leads you forward.
“Be good to your work, your word, and your friend.”  Ralph Waldo Emerson

Service:  The USAF interpretation of service is a commitment to serve your country before self.  The commitment to service was ever present. I lived in awe of my dad’s dedication and service to his USAF career and drive to serve our country.  As an adult, I too possess a commitment to service and to help others; primarily through education and biomedical research. Service and helping others; taught to me at a young age and greatly influenced by my father serves me well in academics today. Your own service enriches your life.
“I slept and I dreamed that life is all joy. I woke and I saw that life is all service. I served and I saw that service is joy.” Kahlil Gibran

Excellence: The final core value of excellence revolves around doing the task proudly and right.  My father went from being a pilot to managing missiles; a career centered on national safety.  He instilled in me the notion to work hard and well, centered around excellence (because the task mattered no matter the importance of the task).  My life has not always resulted in excellence but it was always done as well/properly as I was able.  From this ability to work hard, I realized what I did best was science research and teaching; this continues as I strive for excellence.  Through this same excellence, your life matters too.
“We don’t get a chance to do that many things, and every one should be really excellent. Because this is our life.” Steve Jobs

Integrity. Service. Excellence: “The foundation is integrity, fortified by a commitment to the service of our country, and fueled by a drive in excellence in all that we do. The Air Force recognizes integrity first, service before self, and excellence as its core values…Learn these lessons well. They will serve you well in your professional career and your personal life.” (from the USAF “Core Values” video)

Parkinson’s. Air Force Core Values. A Life Lived: Living with Parkinson’s is teaching me about life and what matters the most.  My recent summer stay on the Naval Air Station (NAS) Pensacola brought back a flood of early life memories.  Although the Core Values were only recently adopted by the USAF; these were fundamental values taught to me by my USAF father.  And I am forever grateful for his influence to infuse these values into the fabric of my life:
These values allow me to focus on living a full life with Parkinson’s; no regrets, live a positive life-style.
These values allow me to accept my diagnosis; they provide strength to live-forward without self-pity.
These values allow me to remain positive; they let me stay hopeful and determined.
These values remind me of my father; his values provided a template for the foundation of my life.

“Everyday courage has few witnesses. But yours is no less noble because no drum beats for you and no crowds shout your name. ” Robert Louis Stevenson