Thursday, June 26, 2014

How Doctors Choose To Die

The subject of palliative care, including how people choose to die, is the topic of one of my chapters in my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia.  I am currently working with the University of Colorado Hospital developing a research plan for a Parkinson's palliative care program (they are the first neurology department in the world to offer palliative care to their patients).  The research being planned would be patient and caregiver centered and focus on improvement in quality of life as a result of a new approach to the entire palliative care process. 
These articles from The Health Care Blog reflect what I believe to be a logical approach and appropriate attitude toward this difficult subject.  The fact that it is written by a doctor makes it even more interesting.
Doctors Really Do Die Differently



Tuesday, June 10, 2014

The Voice of One

This is the only time I can remember writing on a topic that has nothing to do with Parkinson's, though it does address an "illness" of another sort. 

I watched a DVR recording of the latest in the new "Cosmos" series this morning.  They played a recording of Carl Sagan sharing reflections from his book, A Pale Blue Dot, based on seeing a photograph of earth taken from the Voyager satellite before it exited our solar system years ago.  Here is what he said:

A Pale Blue Dot

-- Carl Sagan, Pale Blue Dot, 1994

I have bolded comments Sagan made that were still ringing in my ears when I heard a news report that there has been yet another shooting incident, this time at a high school in Oregon.

My reaction was probably the same as every other caring human being.  Why do these things keep happening?  What is wrong with our world?  How can we put an end to this madness?

What can I do as one small piece of this giant puzzle?  What good is the voice of one (crying in the wilderness)?

Then I realized that what I can do is speak up and say "I've had enough!" and that I have a platform of sorts to do so.  This inconspicuous blog has been visited by over 11,000 people in 60+ countries around the world.   I can't put a stop to this, but WE can. 

Not that it will be easy.  It hasn't gotten this way overnight.  Witness Genghis Khan, Alexander the Great, Joseph Stalin, Hitler, Al Qaeda, our own Civil War and countless other individuals and groups throughout history.  But don't stop there.  Think about the mindset that has evolved right here in our own back yard.

The process has been insidious and has occurred on a grand scale.  Our own country has become divided along ideological, political, gender, class, and other lines that have created a level of animosity and angst beyond anything I have experienced in my sixty five years.  Worse than that, we have come to believe these feelings are justifiable!  "How fervent their hatreds!" Sound familiar?

The bad news is that we have allowed this to happen.  Our political "leadership" (and this refers to both parties, by the way), instead of talking about strategies for working together for the common good, too often has inundated the public with deceitful campaigns designed specifically to create these divides.  Not only have many of us "taken the bait", developing calcified points-of-view, but we exacerbate the problem by sharing these with other members of our chosen "herds" via social media and other communication.  So disdain, if not outright hatred, has become acceptable and the "new normal".

And this is only part of the problem.  There has been a lot of talk about deterioration of families and "family values".  Marriages that produce children are ending, too often, in divorce at an alarming rate, creating confusion in children's minds and lives (in some cases, not all) that lay an unfortunate foundation for too many troubled adults.  Even when there are two parents, how many of us are taking the time from lives filled with so many competing wants and priorities to implant values in our children that will help them discern right from wrong in the future?

Though I believe that faith can play a crucial role in all of this, I will say that I know families who instill positive values in their children but are not "people of faith".  At the same time, I see other families who make faith an important part of their lives that experience benefits that I would wish for any individual or family.

I am talking about "foundational" values that provide a "true north" for all of us.  Not that we always stay on target, but when we stray, we know it.  These values can be instilled by parents, family, church, schools, friends, and more.

Other factors have been discussed, including the level of violence children are exposed to through media, video games, and more.  My feeling is that children that are armed with a strong foundation will grow into adults who will, at least, know right from wrong. 

Please understand that I don't pretend to have all the answers, but I feel compelled to try to initiate a dialog that will lead to positive change.  Each one of us has to do our part to turn the tide.  Here are some things that I plan to do:
  1. Continue to try to model for my family, however imperfectly, love for others and willingness to hear, without disparaging, other points-of-view.
  2. Have the courage to speak out to say something is wrong when it seems appropriate.
  3. Have the wisdom to keep my mouth shut when that is appropriate.
  4. Take my obligation as a U.S. citizen seriously when considering which candidate will provide the leadership this country needs and a positive framework of mutual respect and forbearance.


Thursday, June 5, 2014

LBDA WEBINAR: Living with LBD: The Firsthand Perspective


LBDA Webinar: Living with LBD: The Firsthand Perspective aired yesterday and can now be viewed on youtube at  The goal of the webinar was to share information about Lewy body dementia, the form of dementia that is most common with Parkinson's (PD) patients.  

LBD is the second most prevalent form of dementia (after Alzheimer's).  While there are similarities to AZ, there are also significant differences.  Cognition issues including dementia are one of the PD non-motor symptoms that are often more problematic for patients than the better-known motor symptoms. For most PWPs (persons with Parkinson's), relatively mild cognition symptoms can be experienced early in the disease.  These symptoms remain mild for some, but others it progresses to a condition called mild cognitive impairment (MCI) that is characterized by issues such as impaired executive function and working memory, problems with multi-tasking, slower processing and retrieval of information, impaired concentration and problem solving.  These symptoms can improve or remain the same, but for many they progress to the point where they are interfering with activities of daily living (dementia).  In some cases, more advanced symptoms start around the same time or earlier than motor symptoms, which is dementia with Lewy bodies (DLB).  More often, these advanced symptoms start a year or more after onset of motor symptoms, which is Parkinson disease dementia (PDD).

Linda and I participated to provide feedback regarding the ramifications of my having an MCI diagnosis in conjunction with PD.  Another couple provided the perspective of his LBD diagnosis, including the difficulties encountered in getting an accurate diagnosis.