Category Archives: Alzheimer’s

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

The Generosity of Donating Your Body to Medical Science

“Don’t cry because it’s over, smile because it happened.”  Dr. Seuss

“May you live every day of your life.”  Jonathan Swift

Pros and cons to donating your body to medical science: Likely you’ve heard about it, maybe you’ve even thought about it, donating your body to medical science?  It is a generous and altruistic decision that directly impacts medical schools and/or research foundations.  First, medical schools teach human anatomy and dissection is a crucial part of medical student education.  Second, surgery residents need to refine/learn their surgical techniques using donated bodies. Third, scientists are advancing our understanding of many different diseases by studying donated organs.  In all three cases, bodies and organs donated by individuals provide an essential educational/research scaffolding.  After our anatomy sessions are completed, my medical school has a memorial service (we also invite the family members) to thank and celebrate the lives of those who donated their bodies; it is an incredibly heart-felt and uplifting event.

Furthermore, the medical school (or donor program) accepting the body takes responsibility for handling the eventual cremation and burial tasks.  Typically, families are given the option of having cremated remains buried at the school site or returned to the family; after the school is finished using the body for teaching purposes.  The down-side is this may take up to a year before the cremated remains are available. Most medical schools accept body donations but the donor normally has already made prior arrangements, and the body needs to be immediately available following the donors death.  An important fact to remember is that most medical schools would not accept bodies whose organs have already been donated for use in other patients. Therefore, if donating your organs is important to you, donating your body to medical science may not be a viable option.  Regardless of your decision, donating either your organs or your body is such a noble decision.

“Death ends a life, not a relationship.” Mitch Albom, Tuesdays with Morrie

Donating your brain to science: The idea for this blog topic evolved after I read the following blog: “Donating your brain to science” (http://blog.wellcome.ac.uk/2015/07/31/image-of-the-week-donating-your-brain-to-science/ ).  Many people with Parkinson’s, Alzheimer’s, Multiple Sclerosis and other neurological disorders, are donating their brains to medical science researchers/foundations.  The goal is simple, cure these diseases. By studying these donated brains, these research teams are learning much about these various diseases focused in the brain.

As a long-time scientist,  I have studied various blood coagulation disorders in human organs. My lab group and I always appreciated those who decided to make such donations.  Yes, it is always a solemn process to study these diseased tissues.  However, we are very thankful for these donations because they are most helpful in advancing the understanding of disease processes.

Below is a schematic showing the areas of the brain and physiological functions (left panel) and a coronal slice of a human brain during dissection (right panel).

Brain.anatomy.150803“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.” Mark Twain

The generosity of donating your body to medical science:  The goal of this blog is not to convince you to donate your body to medical science.  The goal is simply to describe the donation process.  I give examples to how those who do generously donate their bodies help medical education and advance our understanding of human diseases. Clearly, this is a very personal decision that requires thorough conversation with your loved-ones/family members and other people important to you.

“I wish it need not have happened in my time,” said Frodo.
So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.” J.R.R. Tolkien, The Fellowship of the Ring

 

 

A Comparison of Parkinson’s to Alzheimer’s

So many people walk around with a meaningless life. They seem half-asleep, even when they’re busy doing things they think are important. This is because they’re chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” Mitch Albom, Tuesdays with Morrie

The story starts at Whole Foods: A few days ago in the checkout line at Whole Foods, when it felt like every single person in the town of Chapel Hill decided to get groceries, I had a delightful chat with the person in front of me about Alzheimer’s and Parkinson’s.  I ended our talk with the comment that “Parkinson’s and Alzheimer’s are very different disorders but they do have some similarities.”  Here is a brief comparison of Parkinson’s to Alzheimer’s, the top two occurring neurodegenerative diseases.

Some similarities comparing Parkinson’s to Alzheimer’s: On the surface, Parkinson’s and Alzheimer’s have several important similarities.  Both Parkinson’s and Alzheimer’s typically occur later in life, after the age of 50 years old (in both disorders, a subset of patients have early-age-onset).  Both Parkinson’s and Alzheimer’s are central nervous system (CNS) diseases, and they both are progressive neurodegenerative disorders.  What does that mean? With time, both Parkinson’s and Alzheimer’s progress as neurons die in the brains of those afflicted, and their symptoms get harder to manage.  Currently, we have no cures for either Parkinson’s or Alzheimer’s. The Table (below) summarizes some of the major similarities and differences between Parkinson’s and Alzheimer’s.

Parkinsons.Alzheimers.150609
Clogs in the drain, I mean the brain, are somewhat similar comparing Parkinson’s to Alzheimer’s:
In autopsy of brain tissue from patients with Parkinson’s, Pathologists find deposits termed Lewy bodies. Composition of Lewy bodies are denatured aggregates of the protein named alpha-synuclein. Formation of Lewy bodies will ultimately promote neuronal cell degeneration, dysfunction and death.  In a somewhat similar setting, but with different proteins, aggregates also accumulate in Alzheimer’s.  There are two events occurring in Alzheimer’s: the first is the extracellular insoluble deposition of a protein named beta amyloid-Aβ causing structures named “beta-amyloid plaques”; and second, the intracellular accumulation (aggregation) of a protein named tau leading to structures called “neurofibrillary tangles”. Accumulation of these ‘plaques’ and ‘tangles’ eventually lead to neuronal cell degeneration, dysfunction and death. The cause and effect of these protein aggregates in both Parkinson’s and Alzheimer’s is beyond the scope of this brief review; however, these aggregated proteins are defining disease-causing events in both disorders.

The real estate mantra of “location, location, location” gives a key difference between Parkinson’s and Alzheimer’s: Parkinson’s has its beginning from the loss of dopamine-producing neurons in the substantia nigra region of the brain.  Dopamine is a neurotransmitter released by the brain that plays a number of roles in humans, including: movement, memory, pleasurable reward, behavior and cognition, attention, mood, and sleep. Parkinson’s presents mostly as a movement disorder with some leading to cognitive disorder/dementia.  By contrast, Alzheimer’s has its genesis in the hippocampus, the region of the brain critical for memories and spatial navigation.  And just the opposite to Parkinson’s, Alzheimer’s typically presents with cognitive/dementia issues with few leading to movement disorder.

The architectural principle of “form follows function” provides another major difference between Parkinson’s and Alzheimer’s: Formation of Lewy bodies in the substantia nigra curtails dopamine synthesis. The major symptoms of Parkinson’s typically include some or all of the following:  rigidity, slowness of movement, postural instability, and resting tremor. Furthermore, additional issues occurring in Parkinson’s include mild memory difficulties to dementia, swallowing problems, sleep disorders, and speech difficulties.  Formation of beta-amyloid plaques and  neurofibrillary tangles in the hippocampus begins the process that leads to Alzheimer’s. The symptoms of Alzheimer’s are cognitive (affect memory, language, judgment, and planning) and behavioral and psychiatric (affect the way the patient feels and acts).  The most common cause of dementia (loss of cognitive function) is from Alzheimer’s. As mentioned in the Table (above), we have therapy at managing the symptoms for both Parkinson’s and Alzheimer’s. From my reading, we appear to be further along in management of Parkinson’s with a broader spectrum of therapeutic options and a better understanding/use of life-style changes in attempt to modify disease progression.

Comparing Parkinson’s to Alzheimer’s is much more then comparing apples to oranges:  A simple fact is that we are living longer then ever before.  Therefore, disorders of the elderly, like Parkinson’s and Alzheimer’s, will continue to affect many people.  Parkinson’s and Alzheimer’s remind me of the old movie scenes where someone is slowly being drawn down into a pool of quicksand; the quicksand was always insidious, powerful, relentless, and cruel. Major research efforts and advances are on-going in both Parkinson’s and Alzheimer’s.  I am most hopeful that these future medical advances will be similar to the old movies where we are rescued from our own pools of quicksand named Parkinson’s and Alzheimer’s.

“Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality.” Jonas Salk

NINDS Parkinson’s Disease: http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm

About Alzheimer’s Disease: https://www.nia.nih.gov/alzheimers/topics/alzheimers-basics

Neuropathology: http://neuropathology-web.org/index.html

Brain tour: https://www.alz.org/braintour/3_main_parts.asp