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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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2016: The Year in Parkinson’s

“The most beautiful experience we can have is the mysterious. It is the fundamental emotion that stands at the cradle of true art and true science.” Albert Einstein

“Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” Isaac Asimov

Summary: (Part 1) A brief review of my year with Parkinson’s. (Part 2) An overview of 12 scientific research studies on Parkinson’s from 2016.

Part 1. A personal Parkinson’s 2016 calendar review

Life with Parkinson’s: 706 days ago I started this blog ‘Journey with Parkinson’s’; and it’s been a remarkable journey through time since then.  Life is full, rarely a dull moment.  Dealing with a disorder like Parkinson’s is difficult because it slowly creeps around your body, somewhat stealth by nature but always ever present.  It requires a daily inventory of body movements, mental capacity and overall self-feelings compared to the day-week-month-year before.

Life is loving, fun, intellectually challenging, active, full, rarely a moment off; however, its best that way for me.  I close this paragraph by repeating two quotes from last year. They remind me to simply try to live as best as I am able for as long as I can.  My hope for you is likewise as well; keep going, keep working, stay active, stay the course.  Please make a manageable life-plan/contract with your care-partner, family and close friends; keep going, and please don’t give up.

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

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

My year with Parkinson’s: To highlight my 2016, I’ve chosen 1 event/month to describe (not mentioned are the trips to the beach/vacation with Barbara, golf with the golf buddies, and other activities related to education, research and outreach for Parkinson’s.)  I am a very fortunate person.

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January-June, 2016:
(JAN) The 22nd year/class of undergraduates taking my spring semester course on ‘Biology of Blood Diseases’, great fun!
(FEB) An anniversary dinner with Barbara, a most loving person and the best care-partner.
(MAR) Started work on the WPC Parkinson Daily (eNewspaper) for the World Parkinson Congress).
(APR) Compiled all of the quotes from the students in class that led to the Kindle version (2016)/Paperback version (2017) of “A Parkinson’s Reading Companion”  (Click here to read about it).
(May) Graduation ceremonies are always on Mother’s Day weekend; it is filled with joy and regalia, promise and the future ahead for all of the graduates (typically, I attend the medical school ceremony on Saturday and as many undergraduate ceremonies on SAT-SUN my schedule permits (picture above is from the Dept. Biology commencement).
(JUN) A weekend in the Smoky Mountains in Asheville, NC: to attend a Parkinson’s retreat, to relax-renew-play golf, and to get a second Parkinson’s-related tattoo.

“Be happy for this moment. This moment is your life.” Omar Khayyam

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July-December, 2016:
(JUL) A weekend in Greenville, SC to participate and get certified in PWR! (Parkinson Wellness Recovery); an amazing experience (click here to read blog post about it).
(AUG) Truly a professional highlight of my career being chosen by the medical students to deliver the 2016 Richard H. Whitehead Lecture (click here to read blog post about it).
(SEP) Attended and presented a poster at the 4th World Parkinson Congress (WPC) in Portland, OR (click here to read about the WPC).
(OCT) Moving Day® NC Triangle, National Parkinson Foundation; great team and such a fun day/experience (click here to read about NC Triangle Moving Day).
(NOV) Research proposal submitted on the role of proteases and their inhibitors, alpha-synuclein and exercise in Parkinson’s. It is something I’ve been thinking about all of last year (click here to read about the funding program).
(DEC) Finished teaching the 3rd class of the Honor’s-version and fall semester of the undergraduate ‘Biology of Blood Diseases’ course; a great honor for me.

“Success is not the key to happiness. Happiness is the key to success. If you love what you are doing, you will be successful.” Albert Schweitzer

Part 2. The year (2016) in Parkinson’s science

Parkinson’s with a hopeful future: To live successfully with a chronic and progressing neurodegenerative disorder like Parkinson’s requires much, but in the least it takes hope.  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.

Parkinson’s research: Parkinson’s is the most prevalent neurodegenerative movement disorder.  According to PubMed, there were 6,782 publications in 2016 that used “Parkinson’s disease” in the Title/Abstract.  Likewise in 2016, PubMed had 9,869 and 1,711 citations on Alzheimer’s disease and on Amyotrophic Lateral Sclerosis (ALS), respectively. Most research studies move in incremental steps; we describe a hypothesis and collect the data to hopefully advance us forward.

2016, the year in Parkinson’s: To remind us of some of these forward steps in Parkinson’s research, and to add to our base-level of hope, here are 12 projects from 2016 regarding Parkinson’s (there are several studies, not mentioned here, that I’m currently working on for individual blog posts because they seemed super-relevant and in need of more thorough presentation/explanation).  Although 12 is a minuscule list of citations/work reported from last year, it reinforces a simple notion that our trajectory is both positive and hopeful.

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January, 2016: Dipraglurant FDA-approved to treat dyskinesia. After ~5 years of treatment with the ‘gold-standard’ Levodopa/Carbidopa, many people-with-Parkinson’s develop drug-induced involuntary movement (also called dyskinesia).  This can be a serious side-effect of levodopa, and it can lead to numerous detrimental consequences.  The pharmaceutical company, Addex Therapeutics, has received orphan drug status for their drug named Dipraglurant, which will be used for the treatment of levodopa-induced dyskinesia.  Click here to read about the putative molecular mechanism of Dipraglurant, what advantages Addex gains from the designated orphan-drug status, and for more information about Addex.

“January is here, with eyes that keenly glow, A frost-mailed warrior striding a shadowy steed of snow.” Edgar Fawcett

February, 2016: Early detection of Parkinson’s from mouth salivary gland biopsy.   There is no definitive test to identify Parkinson’s in its early stages.  Finding an easily accessible tissue for  biopsy  to help with the diagnosis would be of value.  From autopsy samples, the submandibular saliva glands in the mouth seemed to be a relevant and easily accessible site to study.  The test involved inserting a needle into the submandibular salivary gland under the jaw,  staining for modified-a-synuclein.   The results revealed  that Parkinson’s patients had  increased level of a-synuclein  compared to patients  without Parkinson’s.  Click here to view this paper: Adler, Charles H. et al. “Peripheral Synucleinopathy in Early Parkinson’s Disease: Submandibular Gland Needle Biopsy Findings.” Movement disorders : official journal of the Movement Disorder Society 31.2 (2016): 250–256. PMC. Web. 13 Feb. 2017.

“Even though February was the shortest month of the year, sometimes it seemed like the longest.” Lorraine Snelling

March, 2016:  Three-dimensional scaffold used  to grow neuronal cells for transplant to brain.  Scientists have been able to convert adult stem cells into neuronal cells by culturing the stem cells in three-dimensional  scaffolding.   There are many obstacles successfully using stem cells to treat Parkinson’s disease; one of them is converting the stem cells into dopamine-producing-neuronal cells to replace the dead brain cells of the patient.   The three-dimensional scaffolding facilitated which allowed the neuronal cells to be injected into mice. Hopefully, this approach will eventually be ready for testing in humans; however, this is a potential glimpse to the future. To read this research paper, click here: “Generation and transplantation of reprogrammed human neurons in the brain using 3D microtopographic scaffolds” by Aaron L. Carlson et al., in Nature Communications. Published online March 17 2016 doi:10.1038/ncomms10862

“It was one of those March days when the sun shines hot and the wind blows cold: when it is summer in the light, and winter in the shade.” Charles Dickens, Great Expectations

April, 2016: Role of Mer and Axl in immune clearance of neurons in Parkinson’s.
TAM receptors are found on immune system cells and they help clear out dead cells  generated by out bodies.  Two of the TAM receptors, dubbed Mer and Axl, help immune cells called macrophages act as garbage collectors. This study asked whether or not the brain microglial cells (brain macrophages) had such activity through Mer and Axl.  Interestingly, in mice lacking Mer and Axl, neurons regenerated much more rapidly in certain areas of the brain. Furthermore, microglial expression of Axl was upregulated in the inflammatory environment in a mouse model of Parkinson’s.  These results identify TAM receptors as controllers of microglial scavenger activity and also as potential therapeutic targets for Parkinson’s.  Click here to view this article: Fourgeaud, L., et al. (2016). “TAM receptors regulate multiple features of microglial physiology.” Nature 532(7598): 240-244.

“April hath put a spirit of youth in everything. (Sonnet XCVIII)”  William Shakespeare, Shakespeare’s Sonnets

May, 2016:  Complex genetics found in the study of Parkinson’s in human brain tissue.  Genetic changes were found in Parkinson’s disease and Parkinson’s disease dementia.  A team of scientists used RNA sequencing to illuminate two phenomena linked with the onset of Parkinson’s disease: specifically, differential gene expression and alternative splicing of genes. The study describes 20 differentially expressed genes in Parkinson’s and Parkinson’s dementia, comparing these with healthy controls. Genes showing over-expression included those involved with cell movement, receptor binding, cell signaling and ion homeostasis. Under-expressed genes had an involvement with hormone signaling.  These results increase our understanding of Parkinson’s; furthermore, the complexity of their results suggest we may be able to achieve a more detailed diagnosis .  Click here to view paper: Henderson-Smith, Adrienne et al. “Next-Generation Profiling to Identify the Molecular Etiology of Parkinson Dementia.” Neurology: Genetics 2.3 (2016): e75.

“May, more than any other month of the year, wants us to feel most alive.” Fennel Hudson

June, 2016: Mutations in a gene called TMEM230 causes Parkinson’s. The role of TMEM230  was found to be in packaging the neurotransmitter dopamine in neurons.  Interestingly, TMEM230 bridges membranes in synaptic vesicles; these vesicles are storage reservoirs for neurotransmitters. Since the loss of dopamine-producing neurons defines Parkinson’s, a defect in TMEM230 implies a new link to a genetic cause of Parkinson’s.  The research team identified this mutation in Parkinson’s patients in North America and Asia. Click here to view paper: Deng, H-X, et al., “Identification of TMEM230 mutations in familial Parkinson’s disease”. Nature Genetics 48, 733–739 (2016).

“I wonder what it would be like to live in a world where it was always June.”  L.M. Montgomery

July, 2016: Improving deep brain stimulation (DBS), one patient at a time.  Instead of one-size-fits-all, these researchers are pioneering a novel strategy for fine-tuning DBS on each person’s individual physiology.  Their DBS platform, termed Phasic Burst Stimulation, has the potential to (i) enhance therapeutic efficacy, (ii) extend battery lifespan; (iii) reduce detrimental side effects, and (iv)  adjust as each person’s motor symptoms change.  This tuning-based DBS approach has real promise.  Click here to view paper: “Phasic Burst Stimulation: A Closed-Loop Approach to Tuning Deep Brain Stimulation Parameters for Parkinson’s Disease.” by A.B. Holt et al., PLOS Computational Biology, http://dx.doi.org/10.1371/journal.pcbi.100501

“My life, I realize suddenly, is July. Childhood is June, and old age is August, but here it is, July, and my life, this year, is July inside of July.” Rick Bass

August, 2016: Comparison of different movement disorders to better understand Parkinson’s.  These researchers compared multiple system atrophy (MSA) and progressive supranuclear palsy (PSP) to Parkinson’s.  MSA and PSP are progressive disorders that also cause changes in balance and walking.  The study consisted of  functional magnetic resonance imaging (fMRI) brain scans with each person using a grip strength exercise, which showed changes in the regions of brain that control muscle movement. Parkinson’s patients showed changes in the putamen and the primary motor cortex;  MSA patients had changes in the primary motor cortex, the supplementary motor area and the superior cerebellum. PSP patients showed a change in all four areas.  Normal healthy controls had no changes. These detailed results (i) show the progression of each movement disorder and (ii) indicate that biomarkers for these specific-regions of the brain might be useful for not only monitoring disease progression but also response to therapy. Click here to view article: Burciu et al., “Functional MRI of disease progression in Parkinson disease and atypical parkinsonian syndromes.”, Burciu, Chung, Shukla, Ofori, McFarland, Okun, Vaillancourt, Neurology, 016 Aug 16;87(7):709-17. doi: 10.1212/WNL.0000000000002985

“The month of August had turned into a griddle where the days just lay there and sizzled.” Sue Monk Kidd, The Secret Life of Bees

September, 2016: Preventing falls by combining virtual reality and treadmill training.   Falling down is one of the most common and most detrimental problems in the elderly  with Parkinson’s. This research team combined treadmill use with virtual reality training. They tested a large group of older adults at high risk for falls; they found that treadmill training with virtual reality led to reduced fall rates compared to treadmill training alone.Click here to view article: Mirelman et al.,  “Addition of a non-immersive virtual reality component to treadmill training to reduce fall risk in older adults (V-TIME): a randomised controlled trial”, The Lancet, 2016 Sep 17;388(10050):1170-82. doi: 10.1016/S0140-6736(16)31325-3

“By all these lovely tokens September days are here, With summer’s best of weather And autumn’s best of cheer.”  Helen Hunt Jackson

October, 2016: Caffeine-based compounds stop alpha (a)-synuclein misfolding in a yeast model of Parkinson’s. The aggregation (misfolding) of the protein a-synuclein is thought to be a key contributing factor in neuronal cell death that leads to Parkinson’s.  The misfolded a-synuclein ultimately forms what are termed Lewy bodies, which produce much neuronal cell morbidity and mortality. Caffeine has been shown to be  somewhat protective against Parkinson’s. The study here made double-headed constructs of compounds using caffeine and nicotine and other chemicals and asked whether or not they could stop a-synuclein misfolding.  Possibly a far-fetched  idea, 2 of the caffeine-double-headed compounds worked.  These studies used a novel a-synuclein-fluorescent-green substance expressed in yeast.  Expression of the green-a-synuclein misfolded and killed the yeast; however, in the presence of the caffeine-adducts, the green-a-synuclein folded properly and the yeast stayed alive.  Such cool science.  To read this paper, click here) “Novel dimer compounds that bind α-synuclein can rescue cell growth in a yeast model overexpressing α-synuclein. a possible prevention strategy for Parkinson’s disease”, Jeremy Lee et al., ACS Chem Neurosci. Epub 2016 Oct 7. 2016 Dec 21;7(12):1671-1680. doi: 10.1021/acschemneuro.6b00209.

“Autumn is my favourite season of all. It is a transitory period that allows the earth to rest before it sees the harshness of winter and hears the promise of spring.”  Kamand Kojouri

November, 2016: PINK1 gene mutation linked to early onset of Parkinson’s.  A single mutation in the PTEN-induced putative kinase 1 (PINK1) gene has been found to promote  the development of early-onset Parkinson’s. There is growing evidence that PINK1 collaborates with the protein named PARKIN; together they help regulate neuronal cell mitochondria. This interaction to regulate mitochondria (the cell’s power plant) by  PINK1 and PARKIN is important because many brain disorders are known to have issues with energy production (mitochondria) besides Parkinson’s. Click here to view paper: Puschmann, A., et al. Heterozygous PINK1 p.G411S increases risk of Parkinson’s disease via a dominant-negative mechanism. Brain 2016; 140 (1): 98-117. doi: 10.1093/brain/aww261.

“October extinguished itself in a rush of howling winds and driving rain and November arrived, cold as frozen iron, with hard frosts every morning and icy drafts that bit at exposed hands and faces.”  J.K. Rowling, Harry Potter and the Order of the Phoenix

December, 2016:  President Obama signed the 21st Century Cures Act. Not a paper but a National Institute of Health (NIH) federally-supported research initiative. The Cures Act is focused on  cancer, brain disease, drug addiction and other diseases/processes for the next  decade. The 21st Century Cures Act contains $4.8 billion in new NIH (National Institutes of Health) funds, including the BRAIN Initiative for the comprehensive mapping of  the brain.  It is anticipated that we will achieve an even better understanding of Parkinson’s than we have today.  Recently, a commentary about the Cures Act from the viewpoint of the NIH was published in the New England Journal of Medicine. Click here to read this article: Hudson, K. L. and F. S. Collins (2017). “The 21st Century Cures Act — A View from the NIH.” New England Journal of Medicine 376(2): 111-113.

“December’s wintery breath is already clouding the pond, frosting the pane, obscuring summer’s memory…” John Geddes

“I like the scientific spirit—the holding off, the being sure but not too sure, the willingness to surrender ideas when the evidence is against them: this is ultimately fine—it always keeps the way beyond open—always gives life, thought, affection, the whole man, a chance to try over again after a mistake—after a wrong guess.”  Walt Whitman, Walt Whitman’s Camden Conversations

Useful Parkinson’s disease News/Health Information/Reference Sites (click on links below):
Google Scholar- Parkinson’s disease
Parkinson’s News Today Weekly Digest
Medical News Today (MNT)
Science News- Mind & Brain News
Harvard Medical School- Harvard Healthbeat
The Science of Parkinson’s disease
STAT
NY Times- Well
Neurology Advisor

Cover photo credit: winter smoky mts- http://holicoffee.com/wp-content/uploads/2015/05/great-smoky-mountains-national-park-usa-extreme-out-door-hiking-trail-adventure-37.jpg

PD word cloud- http://us.123rf.com/450wm/lculig/lculig1612/lculig161200292/66735623-parkinson-disease-word-cloud.jpg?ver=6

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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

Immune System and Parkinson’s (Part 1): The Brain and Immune System are Connected

“When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back.” Paulo Coelho

What causes Parkinson’s? Parkinson’s is the 2nd most common neurodegenerative disorder in the elderly population.  We have learned little about the cause (etiology) of Parkinson’s although we know much about its chapter/story (pathogenesis).

Most cases of Parkinson’s occur sporadically and are usually of unknown cause (except the genetic mutations that typically lead to early-onset Parkinson’s).  The graph below presents the complicated chapter/story of Parkinson’s (most are depicted as double-headed arrows to suggest possible reversibility of the effect). This graph also offers clues to the complexity of the many ‘features’ that can be disrupted to promote neuronal cell death in Parkinson’s.  Furthermore, the graph implies a multi-pronged therapeutic (or intervention) strategy might be needed to halt or slow Parkinson’s progression. Each of these pathogenic-factors will be described in future posts; here I start with the immune system.

PD-Immune.150505aBrief overview of the immune system: Our immune system is designed to protect us from infection and injury. There are two parts of the overall immune system, innate immunity and adaptive (or acquired) immunity. We are born with the innate immune system and it requires no education or training to act on foreign substances.  Key cellular components of innate immunity are the white blood cells named neutrophils (also including eosinophils and basophils) and natural killer cells.  The system named Complement is a group of blood-borne proteins, which when activated, assists in destroying foreign substances. Our natural host barriers like skin and body components including tears, sweat, mucus, urine and feces are also part of innate immunity.

The adaptive immune system requires an education for its powerful action.  However, following this education comes a memory that re-engages the cells of adaptive immunity when the foreign substance is encountered again.  There are two parts to the adaptive immune system, humoral immunity and cell-mediated immunity. Humoral immunity describes our ability to create antibodies to antigens, and the B-cell (plasma cell) is the cell that produces antibodies.  Cell-mediated immunity describes our ability to use T-cells to attack foreign substances, including tumor cells.  Either the absence of immune cells or the aberrant action of immune cells on the host lead to immune deficiency syndromes and immune-mediated diseases, respectively.  There are many important interdependent functions for B- and T-cells that go beyond this simple overview.

The supporting cast for the adaptive immune system requires organs to synthesize B- and T-cells (bone marrow and thymus, respectively); regions to process, concentrate and engage foreign substances (spleen and lymph nodes); and conduits to transport immune cells and foreign substances from point-to-point (lymphatic vessels and blood vessels). The schematic below summarizes the complex components of the adaptive immune system.

PD-Immune.system.150505aNew evidence that the brain and immune system are connected:  For many years, the dogma was that the central nervous system (CNS) was an “immune privileged” site, which meant that immune cells could not enter or rarely ventured into this area. This implied that the CNS and immune system had little to no interaction.  Immune cells are known to promote inflammation.  We now know that immune cells cause neuroinflammation, and could be a component in the progression of neurodegenerative diseases including Alzheimer’s, multiple sclerosis, ALS, and Parkinson’s.  An important unanswered question remained; how do peripheral immune system cells enter the CNS to promote pathological (disease-promoting) processes?

This week an interesting paper was published that offers an explanation as to the path taken by immune cells to enter the CNS: “Structural and functional features of central nervous system lymphatic vessels” by Louveau A. and others, Nature (2015) doi:10.1038/nature14432. Go here for the article: http://www.nature.com/nature/journal/vaop/ncurrent/full/nature14432.html
They discovered lymphatic vessels never before detected in the human brain, and these lymphatic vessels are connected to cervical (neck region) lymph nodes/lymphatic vessels.  The drawing below depicts these lymphatic vessels (from http://www.eurekalert.org/pub_releases/2015-06/uovh-mlf052915.php).

92761_web“Missing link found between brain, immune system — with major disease implications” (http://www.eurekalert.org/pub_releases/2015-06/uovh-mlf052915.php):In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia (UVA) School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.

“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’ now we can approach this mechanistically. Because the brain is like every other tissue connected to the peripheral immune system through meningeal lymphatic vessels,” said Jonathan Kipnis, PhD, professor in the UVA Department of Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG). “It changes entirely the way we perceive the neuro-immune interaction. We always perceived it before as something esoteric that can’t be studied. But now we can ask mechanistic questions.”

Immune System and Parkinson’s (Part 2) will describe the possible role of an immune system dysfunction that promotes neuroinflammation as a chapter/story in Parkinson’s.

“For the man sound of body and serene of mind there is no such thing as bad weather; every day has its beauty, and storms which whip the blood do but make it pulse more vigorously.” George Gissing

Educating the Educator About Parkinson’s

“Live as if you were to die tomorrow. Learn as if you were to live forever.” Mahatma Gandhi

As a scientist and medical educator,  I read a lot for work (papers, reviews, chapters, books). There are 100’s of books and 1000’s of papers written about Parkinson’s Disease (PD or Parkinson’s), so where did I begin my education about Parkinson’s and what did I read?  Let me qualify this by saying I read a lot more then I’m describing below; however,  there is no reason to publicly criticize an author’s work on PD, just won’t do it.

Neurologist’s Office: Left with 2 publications from the National Parkinson Foundation- (1) Parkinson Disease: What You and Your Family Should Know; and (2) Parkinson Disease: Speech and Swallowing.  Both pamphlets were informative, well-written and with good-intentions.  I learned a lot.

From my Office/Computer (medical textbooks):  My research is in Hematology, yes, I study blood diseases (specifically, how your blood clots); thus, I have many textbooks (print and virtual). I read the chapters on Parkinson’s in 3 important resources: (1) Harrison’s principles of internal medicine; (2) Robbins basic pathology, and (3) UpToDate.  Although I read about diseases all the time, I had never read about Parkinson’s and then had to apply it to me. I should point out that each resource was well-written, well-described and very clinical in scope. In all honesty after reading this material, I shuddered in fear, and needed more reassuring reading to educate my mind and to calm my racing heart.

Books that made a huge difference to my understanding of Parkinson’s.  Each of the books below had outstanding support for those with Parkinson’s.  These authors had a wonderful way of presenting/describing Parkinson’s and the various available therapies.  Each book provided guidance for others helping and caring for those of us with PD (caretakers, family, friends, co-workers).  And these books were written with a voice that made me truly admire the author(s) because they so cared for people with Parkinson’s.

(1)  Navigating Life with Parkinson Disease (Neurology Now Books) by Sotirios Parashos (Author), Rose Wichmann (Author), Todd Melby (Contributor)
Paperback: http://www.amazon.com/Navigating-Parkinson-Disease-Neurology-Books/dp/0199897786/ref=tmm_pap_title_0
kindle: http://www.amazon.com/Navigating-Parkinson-Disease-Neurology-Books-ebook/dp/B00BVJ7JBC/ref=tmm_kin_title_0?_encoding=UTF8&sr=&qid=

(2)  What Your Doctor May Not Tell You About(TM): Parkinson’s Disease: A Holistic Program for Optimal Wellness by Mary J. Shomon (Author), Jill Marjama-Lyons (Author)
Paperback: http://www.amazon.com/What-Your-Doctor-Tell-About/dp/0446678902/ref=tmm_pap_title_0?ie=UTF8&qid=1426018434&sr=8-1
Kindle: http://www.amazon.com/What-Your-Doctor-Tell-About-ebook/dp/B000FA669O/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1426018434

(3)  Delay the Disease -Exercise and Parkinson’s Disease (Book) Spiral-bound – by David Zid (Author), Jackie Russell (Editor), RN (Editor), BSN (Editor), CNOR (Editor), Photography – Joanne Adams (Illustrator), BFA (Illustrator), CMI (Illustrator)
Spiral-bound:  http://www.amazon.com/Delay-Disease-Exercise-Parkinsons-Book/dp/1424332087/ref=pd_bxgy_b_text_z

(4)  Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition Paperback – by Michael S Okun MD (Author)
Paperback: http://www.amazon.com/Parkinsons-Treatment-Secrets-Happier-English/dp/1481854992/ref=tmm_pap_title_0
Kindle: http://www.amazon.com/Parkinsons-Treatment-Secrets-Happier-Life-ebook/dp/B00BV6ZX68/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=

(5)  Parkinson’s Disease For Dummies  – by Michele Tagliati (Author), Gary Guten (Author), Jo Horne (Author)
Paperback: http://www.amazon.com/Parkinsons-Disease-Dummies-Michele-Tagliati/dp/0470073950/ref=tmm_pap_title_0
Kindle: http://www.amazon.com/Parkinsons-Disease-Dummies-Michele-Tagliati-ebook/dp/B004QO9PIO/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=

In summary, each of these books encouraged me about my understanding of Parkinson’s.  These books brought Parkinson’s out in the open about the future, and they gave me a sound foundation for potential therapy.  And most importantly, they gave me a positive feeling of hope for the rest of my life with Parkinson’s.  Finally, you may have a different list of Parkinson’s books that both educated you and bolstered your spirits.  Reading about and enhancing our understanding of Parkinson’s is a good thing.

*Cover photo credit: https://www.med.unc.edu/ois/services/room-reservations/rooms-supported/classroom_images/G-202.jpg/@@images/1cfd1e03-b1ed-431d-91ae-840173dd93d3.jpeg