Window of Opportunity: Living with the reality of Parkinson’s and the threat of dementia

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.


Contents

  • Foreword by Dr. Benzi Kluger
  • Acknowledgments
  • Introduction
  • Chapter 1: Crossroads
  • Chapter 2: Life before Parkinson's
  • Chapter 3: The Elephant in the Room
  • Chapter 4: Learning Curve
  • Chapter 5: What's Up, Doc?
  • Chapter 6: Deep Brain Stimulation
  • Chapter 7: Bad News/Good News
  • Chapter 8: Parkinson's and Dementia
  • Chapter 9: Stress
  • Chapter 10: Living with PD and Cognitive Impairment
  • Chapter 11: Choices
  • Chapter 12: Impact on Families
  • Chapter 13: Palliative Care and Neurology: Striving for Justice
  • Chapter 14: Faith
  • Chapter 15: Recommendations
  • Epilogue
  • Appendix A: Technical Information
  • Appendix B: The Seven Stages of Dementia
  • Resources
  • Recommended Reading
  • About the Author
  • Endnotes

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 bestTom
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.