Friday, July 18, 2014

Vote For Parkinson Association of the Rockies!


12th Annual Vitality Walk - Longmont

VOTE FOR PARKINSON ASSOCIATION OF THE ROCKIES!!!!!!!!!!!!!!!!!



     Hi, this is a little virtual fundraising competition for the Parkinson 

Association of the Rockies. They are our scrappy little hometown Parkinson’s 

advocacy organization serving Colorado, Wyoming and beyond. They are not 

affiliated with any of the national organizations and as a result, they spend 

all of their money in our region.

     
     Please take a minute to vote for them in this contest. There’s no cost 

involved and you’d be doing a great organization a little favor (and if they 

win, they said that they’re going to bring a Rocksteady Boxing Program for 

Parkinson’s to Colorado, which would be excellent!!!).
     
    You can visit the contest here!

     The contest is over on Monday night at midnight so take a moment to 

vote for them right now.  There are additional prizes for the group that 

gets the most increase in Facebook likes so be sure to visit PAR’s 

Facebook page and “like” them-you can get there by visiting 

https://www.facebook.com/PARockies

Saturday, July 5, 2014

Are You A Parkinson's Warrior?


Life Care Centers of America


Join us for a day of high-intensity, Parkinson's-specific exercise featuring physical, occupational and speech therapists from the Parkinson's Network at Life Care Centers of America. Our Parkinson's warriors will be attacking PD from all angles by addressing not only physical elements but also incorporating voice, cognitive and fine motor exercises into a comprehensive program.

There are three daylong sessions starting in August. Choose a session near you or go to all three!

Friday, August 8, 2014 in Longmont, Colorado - Contact Hope Engel PT DPT (303) 776-5000

Friday, August 22 in Aurora, Colorado - Contact Meredith Roberts PT DPT (720) 863-1075

Friday, October 10 in Littleton, Colorado - Contact Stella Mahoney PT DPT (303) 798-0614

Preregistration and a prescreening visit is required to participate in this unique event. Contact each location directly to schedule an appointment (however, if you get screened for one event, you will be approved for all three).


John Dean MA CCC SLP
Parkinson's Program Coordinator/Mountain States Division
Office 303-684-5755/ Cell 303-532-6209/ Fax 303-684-5699
Email:  John_Dean@lcca.com

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
In late 2011, I wrote an essay called “How Doctors Die.” Drawing on my observations and experiences as a doctor, I reported that doctors tend to seek less end-of-life care than ordinary patients do. They know when further treatment is likely to be futile and when life would cease to be worth living. The point I wanted to make was that all of us should have the choice to die that way if we wish—at home, with family, without dramatic hospital interventions, without pain.
The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.
While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”

This essay is an attempt to address such questions. Perhaps it should be viewed as a set of endnotes to “How Doctors Die.” For every assertion of mine that was based on observation, I’ve looked for relevant scholarly evidence that might support or refute it. Here is what I found:
First, and most important, is the question of whether doctors, for the most part, die differently. One of the clearest indicators we have is a survey from Johns Hopkins University. It’s called the Johns Hopkins Precursors Study, and it’s based on the medical histories and decisions of students from the School of Medicine classes of 1948 through 1964 who volunteered to be part of the survey. According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.
I also asserted in “How Doctors Die” that CPR is rarely as effective as people seem to think. What people have seen on television is at odds with happens in real life. A1996 study published in The New England Journal of Medicine found that CPR as portrayed on television was successful in 75 percent of 60 cases and that 65 percent of the patients went home. In contrast, in a 2010 study of more than 95,000 cases of CPR in Japan, health professor Hideo Yasunaga and fellow researchers found that only 8 percent of patients survived for more than one month. Of these, only about 3 percent could lead a mostly normal life. A little more than 3 percent were in a vegetative state, and about 2 percent were alive but had a “poor” outcome.
My sense that there’s a yearning among ordinary patients to have more peaceful deaths has been echoed in the research of University of Wisconsin-Madison nursing professor Karen Kehl. In an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” Kehl analyzed a collection of relevant articles and, based on their contents, ranked the attributes of an ideal death as follows: being in control, being comfortable, having a sense of closure, having one’s values affirmed, trusting in care providers, and recognizing impending death. Hospitals cannot help with most of these things. Unfortunately, most patients do not see their wishes fulfilled. A 1998 study published in the Journal of the American Geriatrics Society looked at Medicare patients and found that, while most said they preferred to die at home, most died in hospitals.
I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction, especially when there’s nothing in writing. A 2003 study published in theJournal of Clinical Oncology found that most patients and families agree in theory that patients should make their own end-of-life decisions, but in practice about half of families override the stated preferences of patients. They have disagreements about the use of life-sustaining measures, and they lack written documents to resolve the matter. In contrast, a 2010 study in The New England Journal of Medicine found that people with advance directives usually receive the care they’ve chosen.
Every doctor has heard stories about people who have had miraculous recoveries, despite a doctor’s prediction. (Such stories are one reason doctors hate to make predictions.) But the sort of cases I’ve written about are those where all treatment has failed and the patient faces death soon. When applied to a patient in the last stages of a terminal decline, CPR is particularly ineffective. A 2010 study published in the journal Supportive Care In Cancer looked at terminal patients who wanted no CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, 48 hours later, all were dead. Well-meaning CPR advocates talk in terms of “survival,” but all the term means is that the heart again beats on its own. In the above example, survival was 11 percent, but “survival” as often understood by the public—regaining a reasonable quality of life—was zero.
We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.
Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.
 
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.
How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.
To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.
The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.
But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.
Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.
Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.
It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.
Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.
 

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


This excerpt from Sagan's book Pale Blue Dot was inspired by an image taken, at Sagan's suggestion, by Voyager 1 on February 14, 1990. As the spacecraft left our planetary neighborhood for the fringes of the solar system, engineers turned it around for one last look at its home planet. Voyager 1 was about 6.4 billion kilometers (4 billion miles) away, and approximately 32 degrees above the ecliptic plane, when it captured this portrait of our world. Caught in the center of scattered light rays (a result of taking the picture so close to the Sun), Earth appears as a tiny point of light, a crescent only 0.12 pixel in size.
Look again at that dot. That's here. That's home. That's us. On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives. The aggregate of our joy and suffering, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, hopeful child, inventor and explorer, every teacher of morals, every corrupt politician, every "superstar," every "supreme leader," every saint and sinner in the history of our species lived there--on a mote of dust suspended in a sunbeam.
The Earth is a very small stage in a vast cosmic arena. Think of the rivers of blood spilled by all those generals and emperors so that, in glory and triumph, they could become the momentary masters of a fraction of a dot. Think of the endless cruelties visited by the inhabitants of one corner of this pixel on the scarcely distinguishable inhabitants of some other corner, how frequent their misunderstandings, how eager they are to kill one another, how fervent their hatreds.
Our posturings, our imagined self-importance, the delusion that we have some privileged position in the Universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark. In our obscurity, in all this vastness, there is no hint that help will come from elsewhere to save us from ourselves.
The Earth is the only world known so far to harbor life. There is nowhere else, at least in the near future, to which our species could migrate. Visit, yes. Settle, not yet. Like it or not, for the moment the Earth is where we make our stand.
It has been said that astronomy is a humbling and character-building experience. There is perhaps no better demonstration of the folly of human conceits than this distant image of our tiny world. To me, it underscores our responsibility to deal more kindly with one another, and to preserve and cherish the pale blue dot, the only home we've ever known.
-- 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

Home


LBDA Webinar: Living with LBD: The Firsthand Perspective aired yesterday and can now be viewed on youtube at https://www.youtube.com/watch?v=jecDrlVzzcA.  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.

Friday, May 30, 2014

Window of Opportunity excerpt




WINDOW OF OPPORTUNITY

Living with the Reality of Parkinson's and the Threat of Dementia


KIRK W. HALL



Smashwords Edition
Copyright © 2013 Kirk W. Hall
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, without the prior permission of the author.
Ebook formatting by www.ebooklaunch.com



Other books by Kirk Hall

Carson and His Shaky Paws Grampa (Innovo Publishing, 2011)
Carina and Her Care Partner Gramma (Innovo Publishing, 2013)
For more information or to order, visit www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html



Dedication

To my wife, Linda, with all my love
and
To all my brothers and sisters in the Parkinson's community



Contents


Reader comments

By reading this book, I learned an enormous amount about the subject of dementia in general, and more specifically, LBD and PDD, subjects that must be right at the top of the list of taboo subjects for most patients and their doctors to discuss.  

I was truly moved by Kirk's candor, exposing tremendous vulnerability, which could not have been an easy thing to do, as well as unflinching commitment to tackling such an emotion-laden subject.  I was also impressed by the amazing relationship that Kirk has forged with Dr. Kluger, one more akin to a relationship of equals than I have ever witnessed between a doctor and a patient.  This is a tribute to both Kirk and Dr. Kluger, each of whom I regard as truly extraordinary individuals.  I sincerely hope that Kirk will have many years to write, speak and contribute to the Parkinson’s community.  


Valerie Graham
Parkinson Disease Foundation PAIR Advocate
Co-Founder, Bionic Brigade DBS Support Group

FOREWORD

The first time I met Kirk Hall was in November of 2008. In retrospect, I think it is fair to say that this meeting shaped both of our lives in ways that neither of us would have predicted at the time. I think it is also fair to say that it began a relationship that has moved far beyond what I learned about in medical school classes on communication as the "doctor-patient relationship."

I was just four months into my grown-up job as an assistant professor of neurology at the University of Colorado following more than ten years of school, residency, and fellowships. Despite all this preparatory work, I was still very much in the midst of figuring out what I was doing with my career. Still, I was not totally without direction. Having done fellowships in behavioral neurology (the neurology of problems with thinking, memory, and behavior, particularly dementia) and movement disorders (the neurology of problems with motor control, including tremor and Parkinson's disease), I was committed to doing work at the crossroads of these two fields. Being done with training meant that it was now up to me to determine what that further work would look like. I had just started doing research on non-motor symptoms in Parkinson's disease. Although this may sound focused, non-motor symptoms refers to any and all symptoms other than shaking, slowness, and stiffness (e.g., thinking and memory problems, hallucinations, depression, anxiety, constipation, pain, fatigue, insomnia, etc.).

Kirk was also at a crossroads in his life. He too was at the beginning of a journey that would involve the meeting of behavioral neurology and movement disorders. And despite the fact that he did not choose the medical conditions that led to our meeting, he too was faced with the dilemma of how he was going to live his life with them. Kirk was referred to me by the movement disorder neurologists who were taking care of his tremor to deal with his non-motor symptoms, which at that time included changes in thinking and memory, fatigue, and depression. Although I'm sure my notes from that visit contained a wealth of medical information, including his physical examination and neuropsychological test results, I don't think those notes (or most medical records, for that matter) captured what was really important in our interaction as people.
To begin with, the notes imply that I (the physician) am the expert and Kirk (the patient) is the beneficiary and subject of my knowledge. I think one of the many values of this book is that it turns this common wisdom on its head. Kirk lives with the symptoms I read and write about. He is an expert on this subject because he is the subject.

I remember that Kirk was anxious, and that his anxiety was centered around the changes he noticed in his thinking and memory. Scared may be an even better word for what he felt, as it implies a normal reaction to something scary rather than an abnormal reaction to something that should be easy to accept. For many people, the prospect of losing one's memory, of someday not recognizing your spouse and children, is more frightening even than death. Kirk was not afraid to be vulnerable and share his fears with me then, and he was equally candid when I invited him to speak as part of a patient roundtable discussion in front of 60 doctors and other health care providers. This vulnerability has been one of his many gifts to me and the Parkinson's community, a gift that was a driving force for this book: to take those parts of Parkinson's that are scariest and talk about them openly.

I remember reassuring him at that time that he did not have dementia and that I expected he would have many good years ahead of him. I think it was during this discussion that he first brought up the idea of writing a few books and that I first encouraged him to do so. I could tell him he had a window of opportunity that he could choose to use, but neither of us could know how long it would last. Kirk didn't just take the opportunity, he ran with it. Since that meeting he has led two Parkinson's support groups; written three books; and become an advocate for Parkinson's research, a blogger, an advocate for patients, and a national speaker. This book is important not just for the messages it contains, but as a message itself: an inspiring example of opportunities seized from a place where many would have given up hope.

Kirk is a deeply spiritual man who values his faith and draws upon it as a source of strength and inspiration. To talk about such things in our secular age seems taboo, particularly in a book on a medical topic. But despite the increasing use of technology in medicine, doctors ultimately take care of people, not diseases. When dealing with serious, progressive, and life-altering illnesses, caring means asking people about their hopes and fears, understanding their beliefs, and helping them reconnect with their sources of strength and meaning. This type of work is not currently well supported in our medical system, as it (of course) takes time, has no insurance billing category, and is not for the weak of heart.

Since my first meeting with Kirk, I have gone on to obtain grant funding to better understand the causes of dementia in Parkinson's disease, with the goal of developing improved treatments, and have started one of the first team-based palliative care clinics for Parkinson's disease in the United States. Kirk has become a local and national leader as a patient advocate. I am proud to write the foreword to this book and hope that Kirk inspires you as much as he has me.

—Benzi Kluger, MD, MS
Associate Professor of Neurology and Psychiatry
Director, Movement Disorders Center
University of Colorado, Denver
August 2013



INTRODUCTION

I was diagnosed with Parkinson's disease (PD) in 2008 at the age of 59. I am now 65 years old. A neurological exam in 2012 confirmed that I had also developed amnestic mild cognitive impairment (aMCI),[1] a condition characterized by memory (amnestic) problems more severe than normal based on age and education but not serious enough to affect daily life. This condition often precedes Alzheimer's disease,[2] Lewy body dementia,[3] or Parkinson's disease dementia.[4] Clearly not good news, but not really a shock either, due to cognitive symptoms I had experienced since shortly after my PD diagnosis.
I first had the idea to write this book during the summer of 2009 and have been wrestling with it, to one degree or another, ever since. I'm not sure why I thought this was a good idea. One of the reasons may have been that it was important to me because of my fears about my own future. Since then I have had the opportunity to meet many people with Parkinson's (PWPs) and have consistently found that, for many of them, fear of developing dementia was their primary concern.

Most people know very little about PD unless they have had family or friends with the disease. Even then, their knowledge is generally limited to the impact of PD on motor functions, such as trembling or slowed movement (bradykinesia). Few know about the non-motor symptoms related to PD or are aware that, for many PWPs, these are often more troubling than motor symptoms. High on the list is the slowed thinking (bradyphrenia) that comes with the PD package for most, if not all, PWPs. Few subjects strike fear into our hearts like the fear of cognitive decline. Will it progress to dementia? If so, what does that look like? Are we talking about Alzheimer's or something else? Might I end up unable to communicate with or even recognize those I love most? What is the prognosis for this condition?

Until recently, cognition problems associated with PD had been discussed mostly in whispers and behind closed doors by both the medical community and PWPs. Even now, this subject is only beginning to get the attention it deserves. It remains a topic that many doctors are reluctant to discuss, making it difficult for PWPs, care partners, and families to get direct answers to their questions.

During the summer of 2008, I mentioned my concerns about the cognitive problems I had been experiencing to a "veteran" PWP (she had nine years under her belt at that point). She suggested that I read a book titled Life in the Balance[5] about Dr. Thomas Graboys, a highly regarded and successful cardiologist in Boston, and his experience with both PD and Lewy body dementia.

I was struck by the unflinching honesty and courage that it took for Dr. Graboys (with the help of Peter Zheutlin) to write his book. In describing the context for how he became aware of having these diseases, he freely admits that he wishes he had communicated differently with loved ones and associates. He talks about how these diseases, in different ways, affected his relationships at many levels, including those he had with patients. He mourns the opportunity missed by many colleagues in this age of industrialized medicine to develop personal relationships with patients that provide comfort to patients as well as a very useful context for providing a superior level of care. He includes heart-wrenching notes from family members who share the very real emotional impact on their lives made by the changes they saw in Tom. In the chapter titled "End Game," Tom speaks to the undesirable options he may be faced with (including assisted suicide) and his own internal debate about the right course of action for all concerned. I admire that, even after all he has been through, Tom chose a message of hope, courage, and perseverance, as well as the importance of finding a purpose, for the final chapter of his book.

Though we have never met and my only interactions with him have been a few short emails, I consider Tom to be a friend—perhaps because we have shared similar illness experiences and seem to agree on a wide range of subjects, but even more because of the ways in which he has provided me with encouragement and support. In April 2009, I sent him an email thanking him for writing his book and shared how much it had helped me. I also told him about a writing project I was working on at the time (a personal memoir). He has given me permission to share his incredibly inspirational and motivating return email, which provides a window into the impact of his dementia:

From: Graboys, Thomas Barr,M.D.
Sent: Monday, April 06, 2009 11:02 AM
To: Kirk Hall
Subject: RE: thank you

Bravo tto you mr hall and congrates on comoleting 8 chapters..writing as your
can onlyimprove your situation..it will be a legacy to your famiry.keepit up so
important to keep your mind and body stimultated...keep it up!

My best, 
Tom
Thomas B. Graboys, MD
Professor of Medicine
Harvard Medical School

Tom also mentioned in that final chapter that he was very encouraged by improvement in cognitive function and mood he experienced after taking Namenda (memantine)[6] (a drug prescribed for moderate to severe dementias). When my wife and I visited the National Institutes of Health's National Institute of Neurological Disorders and Stroke (NIH/NINDS) during October 2012 for me to participate in PD clinical research, they conducted a full review of my condition. With regard to my aMCI, the doctors recommended Namenda in conjunction with the Exelon patch[7] (which I had started using in September 2011). At my next appointment with my movement disorder neurologist at the University of Colorado Hospital in March 2013, Dr. Benzi Kluger recommended that I add Namenda to my regimen; he said that some patients were finding the use of Namenda in conjunction with the Exelon patch to be helpful. I remembered what NINDS had told me and the positive comments from Dr. Graboys and agreed to give it a try.

I have been taking Namenda since April 2013 and have experienced noticeable improvements in clarity, acuity, mood, and working memory.[8] I had been getting discouraged about whether I was ever going to be able to write a book that would meet my expectations, but now am reasonably confident that Namenda has provided me with a "window of opportunity" to complete this task that has come to mean so much to me. Eventually I realized that this was just another example of God's presence in my life.

This book focuses on my personal experience with PD and related cognition problems, but it includes information and ideas that I hope will be interesting or useful to PWPs and their families. While it is not my primary objective, I hope it will also provide useful insights to the medical and research community.
At some point on this journey, I began to realize that what I was experiencing was not all bad news, and I want to emphasize this. My fears about the future were knocked off center stage by the opportunities I was being given to meet and develop relationships with other PWPs and care partners as well as other people in the PD world, including individuals employed by PD organizations, doctors, and research scientists. Thankfully, I realized that I was being given an opportunity to at least try to have a positive impact on others in my position. This, in conjunction with my faith and the love of my family and friends, has made a world of difference in my outlook. I truly feel extraordinarily blessed.





Chapter 3: The Elephant in the Room

Nine months after our Mt. Elbert mountain climbing experience, in May 2008, I was in a business meeting in Colorado Springs. At that time, I was marketing director for an agency that provided marketing and advertising consulting for organizations throughout the United States. This meeting was not all that different from hundreds I had attended (or led) in my 38-year career. However, the circumstances were different in that I had been diagnosed with Parkinson's disease (PD) about a month earlier. I had made an appointment during April 2008 with a movement disorder neurologist[9] (MDN) at the University of Colorado Hospital (UCH) for an evaluation of my essential tremor[10] condition (a troublesome condition involving potentially debilitating "action tremor"), which was the only thing to which I could attribute the intense fatigue and disproportionate reaction to stress I had been experiencing. Much to my surprise, I was told that I now was dealing with early-stage PD in addition to ET.

During the course of that May meeting, I started having trouble "processing" the things I was hearing and became literally unable to participate. At that time, I did not really know what to expect with regard to PD symptoms, other than having been told that "everyone is different" in terms of their symptoms. Like most others, I spent only a few minutes with my doctor following my initial diagnosis and was basically on my own until my next appointment in three months. I decided that I would learn as much as I could about PD, through books, other PWPs, support groups, doctors, and the Internet, hoping that this would help me to better understand the changes I was experiencing. In the coming weeks and months I would learn a great deal that was enlightening and helpful, but found very little information pertaining to cognitive issues.
The problems with processing and storage of verbal information continued. It seemed that I would do OK for a while and then gradually just "shut down." This would have been distressing in any case, but was even harder to accept based on the experience I had in managing high levels of responsibility where meetings were a way of life.

One day I was working at my desk and answering the phone while others were at lunch, working on my computer and taking a variety of messages at the same time. I must have reached an "overload" point when I looked for a message I had written for one of my co-workers so that I could leave it in his office for him. I checked all over my desk, on the floor, in the wastebasket and couldn't find it anywhere. Finally, I decided to check in his office, though I had no recollection of taking it there (around the corner and down the hall). I opened his door and there it was on his desk.

I had an interview with another company during this time. It was a company I had been interested in for several years, so part of me was looking forward to it. However, I didn't feel particularly comfortable about going to the interview due to the problems I had been having. Plus, I knew that the stress of a new job (if I got an offer) was not going to be a good thing. I rehearsed for the interview quite a bit because I didn't trust my memory. Unfortunately, another strange "memory event" occurred while I was driving to the interview. I knew that a turn I had to make was coming up. I couldn't remember anything else until I became aware that I didn't know where I was. I had no recollection of passing the point where I was supposed to turn. I kept going straight and eventually made it to the right place, but was a little bit late (not my style). I went through the interview process, but did not do well and did not get an offer. In hindsight, that was for the best.

The theme of "sensory overload"[11] keeps coming up in my attempts to describe the nature of my problems. During a vacation in California with my wife, one of my sons, and his four children, we spent a day at Disneyland. I was still having a good time during the "Jungle Cruise" (one of my favorites at Disney World, which we had been to twice many years ago). However, toward the end I started to sense that same "overloaded" feeling, and I began to process more slowly until I literally became totally dependent on Linda to lead me from one venue to the next. I guess I should not have been surprised that this happened, given the crowds of people, high volume of ambient noise, and so much other concentrated sensory bombardment.

On a variety of occasions going back to the first year I was diagnosed, my doctors described me as a "high-functioning" patient. (I suspect that this may be their code word for "pain in the neck" because of all the questions I asked.) Still, I have been told that intelligence and level of education are thought to play a role in delaying progression of cognitive/memory problems connected with PD.[12] This subject was addressed at the World Parkinson Congress[13] in Montreal during October 2013 by Dr. Janis Miyasaki, who stated that, while typical patients tend to deteriorate at a fairly steady rate over time in terms of their ability to function at previous levels, high-functioning patients tend to deteriorate much more slowly over time and then decline more precipitously.


Obviously, the potential for onset of PD-related dementia is my "elephant in the room." It took an epiphany of sorts to stop focusing on the possible unpleasant outcomes associated with this information. Dr. Kluger's practical suggestion was that I should "keep doing what I'm doing" and "hope for the best." It was time for me to take ownership of the situation and decide what to do next.

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Thursday, May 29, 2014

LBDA Webinar - Living with LBD: The Firsthand Perspective



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Dementia Webinar

Living with LBD: The Firsthand Perspective

A webinar to be hosted by the Lewy Body Dementia Association (LBDA) is planned 

for Wednesday, June 4, 2014 at 2 pm Eastern on Webex. Registration and access 

information will be available on the LBDA website (www.lbda.org) in May. The goal of the 

webinar is to give Lewy body dementia (LBD) patients, Parkinson's patients (PWPs) and their 

caregivers the opportunity to hear from Alexander Dreier, who has been diagnosed with LBD, 

and his wife, Olivia, about what is like for them and how they deal with this diagnosis. 


Kirk and Linda Hall will also participate as representatives of the "PD world" and share how 

they are dealing with Kirk’s mild cognitive impairment (MCI) diagnosis, as MCI is often a 

precursor to Lewy body dementia (LBD), the most common form of Parkinson’s dementia. 


Registration is now closed for this webinar.  Please watch for more 

information on the Web archive of this event.