Category Archives: Believe

Building Empathy for Parkinson’s

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

“To perceive is to suffer.”  Aristotle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parkinson’s disease overview:

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

Parkinson’s disease awareness month: Parkinson’s awareness month is exactly that.  You simply start by making people around you familiar with this disorder.  And you can help others learn more about this neurodegenerative disease. Blake Tedder, our Parkinson’s Foundation Community Development Manager, has been busy.  He has been requesting/receiving proclamations recognizing and acknowledging the impact of Parkinson’s.  We will be thanking Blake for the rest of the year in his tireless effort on Parkinson’s disease; from all of us on the Moving Day planning committee, thank you Blake!

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

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

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

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

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

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

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

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

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

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

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

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

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9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s

“A willing mind makes a hard journey easy.” Philip Massinger

“Lack of activity destroys the good condition of every human being.” Plato

Introduction: Much of my life has been spent exercising. Most of this exercise has been done with sheer delight.  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.  Why?  Animal models (mouse and rat) of Parkinson’s have convincing shown the effect of exercise-induced neuroplasticity.  These animal studies demonstrated neuroprotection and even neurorestoration of Parkinson’s.  But we’re neither mice/rats nor are we an animal model of Parkinson’s disease; thus, this post is an update on exercise-induced neuroplasticity in human Parkinson’s.

“If you don’t do what’s best for your body, you’re the one who comes up on the short end.” Julius Erving

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9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s: Neuroplasticity,  neuroprotection and neurorestoration are catchy words that populate a lot of publications, blogs from many of us with Parkinson’s and from professionals who study/work in the field of Parkinson’s.  It is important for you to develop your own opinion about exercise-induced neuroplasticity. My goal in this post is to provide the basic elements, concepts and key reference material to help you with this opinion. Here is a 1-page summary of “9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s” (click here to download page).

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(1) Parkinson’s Disease (PD): 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; the average age of onset is ~60 years-old.

(2) Safety First: The benefit of an exercise routine/program will only work if you have (i) talked about it with your Neurologist and have his/her consent; (ii) you have received advice from a physical therapist/certified personal trainer about which exercises are ‘best’ for you; and (iii) you recognize that PD usually comes with gait and balance issues, and you are ready to begin. Safety first, always stay safe!

(3) Exercise: Exercise is activity requiring physical effort, carried out especially to sustain or improve health and fitness. Exercise is viewed by movement disorders clinicians, physical therapists, and certified personal trainers as a key medicinal ingredient in both treating and enabling patients at all stages of Parkinson’s.

(4) Brain Health: With or without Parkinson’s disease, taking care of your brain is all-important to your overall well-being, life-attitude, and health. For a balanced-healthy brain, strive for: proper nutrition and be cognitively fit; exercise; reduce stress; work and be mentally alert; practice mindfulness/meditation; sleep; and stay positive.

(5) Neuroplasticity: Neuroplasticity describes how neurons in the brain compensate for injury/disease and adjust their actions in response to environmental changes. “Forced-use exercise” of the more affected limb/side can be effective in driving neural network adaptation.  Ultimately, this can lead to improved function of the limb/side.

(6) Synapses are junctions between two nerve cells whereby neurotransmitters diffuse across small gaps to transmit and receive signals.

(7) Circuitry: A key result of neuroplasticity is the re-routing of neuronal pathways of the brain along which electrical and chemical signals travel in the central nervous system (CNS).

(8) Parkinson’s-specific Exercise Programs:
PWR!Moves (click here to learn more)
Rock Steady Boxing (click here to learn more)
LSVT BIG (click here to learn more)
Dance for PD (click here to learn more)
LIM Yoga (click here to learn more)
Tai Chi for PD (click here to learn more)

What types of exercise are best for people with Parkinson’s disease? Here is a nice overview of the benefits of exercise for those of us with Parkinson’s  (click here). Regarding the PD-specific exercise programs,  I am most familiar with PWR!Moves, Rock Steady Boxing and LSVT BIG (I’m certified to teach PWR!Moves, I’m a graduate of LSVT BIG, and I’ve participated in Rock Steady Boxing). A goal for you is to re-read ‘Safety First’ above and begin to decide which type of exercise you’d benefit from and would enjoy the most.

(9) Brain/Behavior Changes: The collective results found increase in corticomotor excitability, increase in brain grey matter volume, increase in serum BDNF levels, and decrease in serum tumor necrosis factor-alpha (TNFα) levels. These results imply that neuroplasticity from exercise may potentially either slow or halt progression of Parkinson’s.

What the terms mean: Corticomotor describes motor functions controlled by the cerebral cortex (people with Parkinson’s show reduced corticomotor excitability). Brain grey matter is a major component of the central nervous system consisting of neuronal cells, myelinated and unmyelinated axons, microglial cells, synapses, and capillaries. BDNF is brain-derived neurotrophic factor, which is a protein involved in brain plasticity and it is important for survival of dopaminergic neurons. Tumor necrosis factor-alpha (TNFα) is an inflammatory cytokine (protein) that is involved in systemic inflammation.  Some studies of exercise-induced neuroplasticity in human Parkinson’s found the above-mentioned changes, which would imply a positive impact of exercise to promote neuroplastic changes.

What can you do with all of the cited articles listed at the end? Compiled below are some comprehensive and outstanding reviews about exercise-induced neuroplasticity in Parkinson’s.  Looking through these papers, you’ll see years of work, but this work has all of the details to everything I’ve described.

“All life is an experiment. The more experiments you make the better.” Ralph Waldo Emerson

What I believe about neuroplasticity and exercise in Parkinson’s: [Please remember I am not a physician; definitely talk with your neurologist before beginning any exercise program.]  I think about exercising each day; I try to do it on a daily basis.  As a scientist, I’m impressed by the rodent Parkinson’s data and how exercise promotes neuroplasticity. The human studies are also believable; sustained aerobic exercise induces neuroplasticity to improve overall brain health. “Forced-use exercise” is an important concept; I try to work my right-side (arm and leg), which are slightly weaker and stiffer from Parkinson’s. Initially, I used my left arm more, now I ‘force’ myself on both sides with the hope my neural network is stabilized or even improving. If you enjoy exercising as I do, I view it as both an event and a reward; ultimately, I believe it can work and improve my response to Parkinson’s. If you don’t enjoy exercising, this may be more of a task and duty; however, the benefits over time can be better health. Exercise is good for you (heart and brain).  Begin slow, make progress, and see if you are living better with your disorder.  Remain hopeful and be both persistent and positive; try to enjoy your exercise.

“I am not afraid of storms for I am learning how to sail my ship.” Louisa May Alcott

Past blog posts: Both exercise itself and the benefit of exercise-induced neuroplasticity have been common themes for this blog, including (click on title to view blog posting):
Believe in Life in the Presence of Parkinson’s;
Déjà Vu and Neuroplasticity in Parkinson’s;
Golf And Parkinson’s: A Game For Life;
The Evolving Portrait of Parkinson’s;
Believe In Big Movements Of LSVT BIG Physical Therapy For Parkinson’s;
Meditation, Yoga, and Exercise in Parkinson’s;
Exercise and Parkinson’s.

“Do not let what you cannot do interfere with what you can do.” John Wooden

References on neuroplasticity and exercise in Parkinson’s:
Farley, B. G. and G. F. Koshland (2005). “Training BIG to move faster: the application of the speed-amplitude relation as a rehabilitation strategy for people with Parkinson’s disease.” Exp Brain Res 167(3): 462-467 (click here to view paper).

Fisher, B. E., et al. (2008). “The effect of exercise training in improving motor performance and corticomotor excitability in people with early Parkinson’s disease.” Arch Phys Med Rehabil 89(7): 1221-1229 (click here to view paper).

Hirsch, M. A. and B. G. Farley (2009). “Exercise and neuroplasticity in persons living with Parkinson’s disease.” Eur J Phys Rehabil Med 45(2): 215-229 (click here to view paper).

Petzinger, G. M., et al. (2010). “Enhancing neuroplasticity in the basal ganglia: the role of exercise in Parkinson’s disease.” Mov Disord 25 Suppl 1: S141-145 (click here to view paper).

Bassuk, S. S., et al. (2013). “Why Exercise Works Magic.” Scientific American 309(2): 74-79.

Lima, L. O., et al. (2013). “Progressive resistance exercise improves strength and physical performance in people with mild to moderate Parkinson’s disease: a systematic review.” Journal of Physiotherapy 59(1): 7-13 (click here to view paper).

Petzinger, G. M., et al. (2013). “Exercise-enhanced neuroplasticity targeting motor and cognitive circuitry in Parkinson’s disease.” Lancet Neurol 12(7): 716-726 (click here to view paper)..

Ebersbach, G., et al. (2015). “Amplitude-oriented exercise in Parkinson’s disease: a randomized study comparing LSVT-BIG and a short training protocol.” J Neural Transm (Vienna) 122(2): 253-256 (click here to view paper).

Petzinger, G. M., et al. (2015). “The Effects of Exercise on Dopamine Neurotransmission in Parkinson’s Disease: Targeting Neuroplasticity to Modulate Basal Ganglia Circuitry.” Brain Plast 1(1): 29-39 (click here to view paper).

Abbruzzese, G., et al. (2016). “Rehabilitation for Parkinson’s disease: Current outlook and future challenges.” Parkinsonism Relat Disord 22 Suppl 1: S60-64 (click here to view paper).

Hirsch, M. A., et al. (2016). “Exercise-induced neuroplasticity in human Parkinson’s disease: What is the evidence telling us?” Parkinsonism & Related Disorders 22, Supplement 1: S78-S81 (click here to view paper)

Tessitore, A., et al. (2016). “Structural connectivity in Parkinson’s disease.” Parkinsonism Relat Disord 22 Suppl 1: S56-59 (click here to view paper).

“If we could give every individual the right amount of nourishment and exercise, not too little and not too much, we would have found the safest way to health.” Hippocrates

“Life is complex. Each one of us must make his own path through life. There are no self-help manuals, no formulas, no easy answers. The right road for one is the wrong road for another…The journey of life is not paved in blacktop; it is not brightly lit, and it has no road signs. It is a rocky path through the wilderness.” M. Scott Peck

Cover photo credit: http://paper4pc.com/free-seascape.html#gal_post_55564_free-seascape-wallpaper-1.jpg

Brain exercising cartoon: http://tactustherapy.com/neuroplasticity-stroke-survivors/

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Part 2: Journey to Parkinson’s and Magnetic Resonance Imaging

“The best thing about the future is that it comes one day at a time.” Abraham Lincoln

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” Ralph Waldo Emerson

Introduction: Along the way to the diagnosis of Parkinson’s, you may have to undergo several different kinds of tests to help your physician(s) learn what actually is going on with your physiology and neurological network.  Remember there is neither a reliable blood test nor a comprehensive genetic marker evaluation to provide a diagnosis of Parkinson’s. Therefore, the exams I’m getting ready to describe are sometimes done to exclude other disorders and to further implicate Parkinson’s.  My Neurologist says the most helpful thing is the actual patient interview (History and Physical) since most people with Parkinson’s have a characteristic set of signs and symptoms.

These posts (a series of 5 procedures) are purely descriptive/informational but they are important to describe because they can be kind of intimidating and nerve-racking to undergo (just in case any of these tests are suggested by your physician team).  Let me be clear, I am not recommending any of these procedures for you (I’m a basic scientist not a physician). Interestingly, my Neurologist was involved only in the MRI and sleep study, which were done after my diagnosis of Parkinson’s. The other procedures were done before my diagnosis as we (another group of very talented physicians) were trying to sort out what was wrong. These are the procedures:

Part 1 described the Barium Swallow test (click here to read this post);
Part 2 gives an overview of Magnetic Resonance Imaging (MRI) [Current post];
Part 3 highlights Polysomnography, which is a sleep study;
Part 4 presents Electromyography (EMG), which measures nerve/muscle interactions;
Part 5 characterizes Transradial Cardiac Catheterization and Angiography.

“Life is simple. Everything happens for you, not to you. Everything happens at exactly the right moment, neither too soon nor too late. You don’t have to like it… it’s just easier if you do.” Byron Katie

ABC’s of MRI:  Magnetic resonance imaging (MRI) uses powerful magnetic fields and radio waves to produce images of organs and structures inside your body. MRI scans are useful to help physicians diagnose a variety of disease processes, from torn ligaments to visualizing tumors. In Parkinson’s and related disorders, MRI scans are valuable for examining the brain and spinal cord.  During the scan, you lie on a table that slides inside a tunnel-shaped machine (pictured below). Good news is the scan is painless; bad news is the MRI machine is very loud. They will likely offer you earplugs.  Use the earplugs because it is that loud (magnets are being re-positioned).  If you are claustrophobic, request a damp wash cloth to place over your eyes.   They may offer you pillows for support, and they will instruct you and make sure you understand you need to be still.  There will be an emergency call button, laid close to your hand; just in case for whatever reason you need to terminate the scan.  Finally, the average duration of the scan is ~45 minutes; you need to come prepared for this time to be as relaxed and still as possible. The staff helping me get ready for my MRI were very kind, patient and friendly; they were also very knowledgeable.

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

Are there any special precautions beforehand? No, there is little to no preparation required before getting an MRI scan. You will be asked to change into a gown; your clothes are stored in a locked closet. The only unusual preparation is that all removable metallic objects must be left outside the shielded MRI room itself, including removable hearing aids, dentures and other prosthetic devices.  Furthermore, magnetic strips on credit cards can be damaged by the MRI magnet.

“Our greatest glory is not in never falling, but in rising every time we fall.” Confucius

How MRI works ? (Taken from http://www.livescience.com/39074-what-is-an-mri.html): “The human body is mostly water. Water molecules (H20) contain hydrogen nuclei (protons), which become aligned in a magnetic field. An MRI scanner applies a very strong magnetic field (about 0.2 to 3 teslas, or roughly a thousand times the strength of a typical fridge magnet), which aligns the proton ‘spins’.

The scanner also produces a radio frequency current that creates a varying magnetic field. The protons absorb the energy from the variable field and flip their spins. When the field is turned off, the protons gradually return to their normal spin, a process called precession. The return process produces a radio signal that can be measured by receivers in the scanner and made into an image.

Protons in different body tissues return to their normal spins at different rates, so the scanner can distinguish among tissues. The scanner settings can be adjusted to produce contrasts between different body tissues. Additional magnetic fields are used to localize body structures in 3D.”

“Success is not final, failure is not fatal: it is the courage to continue that counts.” Winston Churchill

Why did your neurologist order the MRI? Mostly to eliminate other reasons for our symptoms of Parkinson’s; such as a stroke (ischemic or hemorrhagic), trauma resulting in bleeding (hemorrhage), or brain tumor. If there are no signs of a stroke, other forms of bleeding,  or brain tumor, most MRI brain scans of people with Parkinson’s will appear normal.

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Example of what the mid-brain looks like from the MRI scan (*SN = Substantia nigra, the dopamine-producing region).

Good news/Bad news: The difficult issue is that you’ve just been told that you have Parkinson’s; however, let’s do the MRI scan to rule out stroke, bleeding/trauma, tumor just in case.  I understand what you are feeling, I do.  Knowing you have Parkinson’s takes your breath away; verifying it by eliminating these other processes mentioned above, still sucks.  My Neurologist told me that my brain was ‘unremarkable’; in other words, you’ve got Parkinson’s.  Stay focused, keep an even keel, your life has changed; however, your life is still relevant, keep going forward.

“Never let your head hang down. Never give up and sit down and grieve. Find another way.” Satchel Paige

“Never give up, for that is just the place and time that the tide will turn.” Harriet Beecher Stowe

References about MRI:
http://www.webmd.com/a-to-z-guides/magnetic-resonance-imaging-mri#1
http://www.mayoclinic.org/tests-procedures/mri/home/ovc-20235698
http://www.medicalnewstoday.com/articles/146309.php
http://www.livescience.com/39074-what-is-an-mri.html
https://en.wikipedia.org/wiki/Magnetic_resonance_imaging

Cover photo credit: http://www-tc.pbs.org/wgbh/nova/next/wp-content/uploads/2013/11/malbec-grapes.jpg

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Journey with Parkinson’s Blog in Feedspot Top 50 Parkinson Blogs

“Every day is a journey, and the journey itself is home.” Matsuo Basho

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Award: The Journey with Parkinson’s blog has been recognized by FeedSpot as a top 50 blog on Parkinson’s Disease! “Top 50 Parkinson Blogs & Websites For People Living With Parkinson’s Disease” (Click here to see the list).

“‘Thank you’ is the best prayer that anyone could say.” Alice Walker

Acknowledgment and thank you: We thank FeedSpot for adding this blog to this very distinguished group of blog sites; this is indeed an honor.

Thank you to the readers and followers of the blog; your continued presence, comments and suggestions truly help sustain the time and energy needed to compose these blog posts.

“The measure of achievement is not winning awards. It’s doing something that you appreciate, something you believe is worthwhile.” Julia Child

The future: It is my hope that the Journey with Parkinson’s blog will continue to educate, to bolster and to offer support to anyone with Parkinson’s (or any other neurodegenerative disorder).

“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; we begin to gain control of our symptoms. While it is not easy to remain positive with such a somber disorder, staying positive can help you cope. Thus, we should strive to live positively as we try to shed our cape named Parkinson’s.” Frank C. Church (Excerpt from “Hope, Courage, Persistence, Positivity, Mindfulness, and the Journey“; click here to read this blog post).

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The Mask of Parkinson’s

“I wear the mask. It does not wear me.” Man in the Iron Mask

“See to it, then, that the light within you is not darkness.” Luke 11:35

Précis: The simplest way to describe Parkinson’s is that it’s a movement disorder due to the reduction of dopamine production.  Sometimes one of the more obvious places this absence of dopamine is noticed is the reduction of facial expressions (also referred to as masked facies or hypomimia).  The “mask of Parkinson’s” is further described below.

Loss of facial expression: There are 43 muscles in the face, which are all mostly controlled by the seventh cranial nerve.  Johann Kaspar Lavater said “…The human face is nature’s tablet, the truth is certainly written thereon.” We view the smile as a sign of friendship, happiness, and acceptance; while we view the frown as a sign of sadness or unacceptable.  The Parkinson’s face is somewhat less expressive than before; somewhat more rigid than before.  Many people-with-Parkinson’s also have chronic stiff necks; however, that doesn’t make us Frankenstein.

Scenario #1: 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.

‘Life is a mask through which the universe expresses itself.” Frank Herbert

“You wear a mask for so long, you forget who you were beneath it.” Alan Moore

Changes in your voice: The loss of dopamine in your brain leads to reduced volume in your voice along with your voice becoming flatter/softer in tone.  The same process affecting your face is happening in your voice. If you think of dopamine as a “messenger service”, the brain uses it to send orders/messages to nerves.  When dopamine-producing cells die, all muscles are affected and diminish, including muscles involved in speaking, swallowing, facial motion, legs and  walking, and hand/arm movements.

Scenario #2:  You and your partner are attending a college basketball game;  your home team is 3-points ahead of your biggest rival, and it’s near the end of the second half.  Game over, your team wins, let the fun begin.  Like everyone else in the arena, you are standing, jumping around, high-five’s all near you, and you are shouting (and singing) your lungs out.  Such happens during great college basketball rivalry games.  Without Parkinson’s, all of this is a reality, a dream come true.  There is a feeling of satisfaction and there is a huge positive feeling from the game.  With Parkinson’s, there is the same positive feeling of happiness but with a diminished ability to clap  continuously and you’re less able to shout and sing along loudly with everybody.

Two famous masks:

“Without wearing any mask we are conscious of, we have a special face for each friend.’ Oliver Wendell Holmes

“A mask tells us more than a face.” Oscar Wilde

Consequences of the ‘Parkinson’s Mask’: The change is subtle over time. Mostly,  there is a softness to your voice, your smile is not as big, and you don’t blink your eyes as much.

Subtle differences in the before/after pictures (I’m also younger in the without PD pictures):

16-12-17photoscomp-pd

Because I do a lot of teaching, I get a lot of teaching evaluations and critiques. Here are two comments from two medical students regarding my lecturing in Immunology (one of the medical school courses I co-direct and teach in):

“Dr. Church is a wonderful lecturer! Not only is he easy to follow during lectures as far as explaining concepts is concerned, but his dedication to his students, their questions, and their general well-being never ceases to amaze me.

“Dr. Church should take it as a huge compliment that he was able to convey enthusiasm about the topic and inspire passion in students despite his expression often being limited by Parkinson’s.”

LSVT LOUD® can certainly help boost the volume and tone of your voice. If you use it and practice, it will make a difference.  My Speech Pathologists told me that we think we’re speaking at a normal volume but we’re really not.  Your goal is to train your brain to really speak loud (almost shouting). You can also practice making accentuated facial motions, trying to accentuate what’s going on with your face. You can practice smiling large, and other facial exercises (try practicing your vowels).  I have never had a loud voice and I’m not an overly expressive person; having Parkinson’s has softened everything. When you listen to someone speaking, you also listen with your eyes; thus,  the reduction in visual cues makes it harder to understand you.  To continue to get these positive comments shown above, I need to be constantly practicing on speaking louder and working on my facial exercises.

“Take the emotional temperature of those listening to you. Facial expressions, voice inflection and posture give clues to a person’s mood and attitude.” John C. Maxwell

“People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” Elisabeth Kubler-Ross

Resist the evolving Parkinson’s mask:  The worst-case scenario to what I’ve been describing is the total outward masking/blocking of your inner self and its expression. We must resist that change, we must really work hard to speak louder and to over-accentuate our facial motion to show the emotion that’s within us. Change may be subtle but change is inevitable for most of us regarding this mask. Stay vigilant. Let’s keep working on talking louder and being more expressive. The inner you is still there, it’s functioning and still wanting to get out. Keep working.

“When we can let go of what other people think and own our story, we gain access to our worthiness—the feeling that we are enough just as we are and that we are worthy of love and belonging. When we spend a lifetime trying to distance ourselves from the parts of our lives that don’t fit with who we think we’re supposed to be, we stand outside of our story and hustle for our worthiness by constantly performing, perfecting, pleasing, and proving. Our sense of worthiness—that critically important piece that gives us access to love and belonging—lives inside of our story.” Brené Brown

Cover photo credit: http://7-themes.com/6793576-free-pacific-ocean-wallpaper.html

Help with the Parkinson’s Tremor

“The starting point of all achievement is desire.” Napoleon Hill

“We can’t help everyone, but everyone can help someone.” Ronald Reagan

The Journey With Parkinson’s returns:  The past 2 months have just consumed every waking moment of my time/life, and then some.  I have a back-log of >20 blog posts in some finished-form-or-another. Starting this weekend, I will be able to spend more time researching, thinking, and writing on the blog (and the past 2 month gap between blog posts will be explained in a story entitled “Work in the Presence of Parkinson’s”).

Core movement disorder aspects of Parkinson’s: Most people-with-Parkinson’s have some or most of these manifestations: tremor, bradykinesia, postural instability and rigidity. They are considered the “Cardinal Signs” of Parkinson’s; here is a brief overview.

Resting Tremor: A vast majority of people-with-Parkinson’s will have this ‘type’ of tremor (for a tremor tutorial click here). The tremor consists of a shaking motion, which happens at rest. The affected body part will be in motion when it is not performing an action. The tremor will stop when a person moves this body part. Not all people with Parkinson’s will develop a tremor; or like me, they have another kind of tremor.

Bradykinesia (“slow movement”): A general loss of spontaneous body movement. Bradykinesia causes problems with repetitive motion. Bradykinesia can alter the speed of performance of many everyday events like buttoning shirt-buttons, fastening car seatbelt, or chopping food.

Postural Instability: Postural instability is a tendency to be unstable when standing upright. A person with postural instability has lost some of the reflexes needed for maintaining an upright position.

Rigidity: Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles normally stretch when they move, and then relax when they are at rest.  By contrast, in Parkinson’s that body part remains taut when it moves and does not relax.

Smart-spoon: The “Google Spoon” came first (click here), and it oscillates to counter the negative oscillation of your hand (click here).  You can check on-line to determine whether or not your tremor can be helped by this spoon.

And now a helping hand:  “The invention that helped me write again” (Click here to see video).  My colleague, good friend and golf buddy Nigel saw the story on BBC News.  Technology is evolving; all it takes is an understanding of the problem, a design strategy, and significant effort to create such a device.  It also takes intelligence, talent and diligence to be able to make a device that allowed someone with Parkinson’s and a significant tremor to be able to write and draw again.  Great story, and simply an amazing device!

“The trouble with much of the advice business gets today about the need to be more vigorously creative is that its advocates often fail to distinguish between creativity and innovation. Creativity is thinking up new things. Innovation is doing new things… The shortage is of innovators…” Tom Peters

Cover photo credit: http://vb3lk7eb4t.search.serialssolutions.com/?V=1.0&L=VB3LK7EB4T&S=JCs&C=TC0001578421&T=marc