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
National Parkinson Foundation Medical Advisor
Professor of Neurology
University of Florida
“Kirk Hall delves into the frightening possibility of developing dementia as his Parkinson’s disease progresses. Candid, insightful, and forward-thinking, Kirk demonstrates through his book and his advocacy that cognitive impairment in Parkinson’s disease is not an end to life, but simply a turn in the road that must be negotiated and accepted, but not surrendered to. Window of Opportunity is a must-read for anyone concerned about cognition in Parkinson’s."
Angela Taylor
Director of Programs
Lewy Body Dementia Association
Angela Taylor
Director of Programs
Lewy Body Dementia Association
“I just opened the first chapter about 2 hours ago and couldn’t stop….I just finished it. It is an excellent book!”
Carol J. Walton
CEO, Parkinson Alliance
"Window of Opportunity" is a unique, first-hand account of the "in between time" that comes upon acceptance of a diagnosis and before succumbing to an illness. This thoughtful, unflinching narrative explores the author's journey from his diagnosis of Parkinson's disease in 2008 through his research into the mysterious threat of cognitive dementia in his future.
When my mother was diagnosed with Lewy body dementia, I searched for a book like ‘Window of Opportunity.’ It is a touchstone for those struggling with a dementia diagnosis and the people that love and care for them.”
Leigh Ramsey
Daughter who lost her mother to LBD
“Just finished reading the manuscript and can truly say what a wonderful book this will be for so many people…PWP, family members, caregivers. It was an easy read, honest, ‘story like’ which, for me, lends itself to being a page-turner. You could truly hear your voice, the passion and desire, to help educate others.”
Cheryl Fortunato
Daughter of an LBD patient
“Your book is an excellent piece of work. I particularly enjoyed reading about your history and your approach to handling the difficult things God has allowed you and your family to face. The chapter on faith was inspiring and very humbling. I can only imagine how useful this book will be to a large number of folks who are facing similar situations.”
Rich Carnahan, Ph.D.
Stephens Minister
Retired Aerospace Engineer
“Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment brought on by Parkinson’s disease and the uncertainty of a future that might include dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor. He describes the long and seemingly endless visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the progression of his disease. His copious notes on his symptoms and mental state allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.
The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how a potentially disabling diagnosis can be a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on the path.”
Diane Cook
Leader, LEAP Parkinson's Support Group
People with Parkinson's Advisory Council, Parkinson's Disease Foundation
Colorado State Director, Parkinson's Action Network
Senior Patient Advocate, ProjectSpark Foundation
“When Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were impressed with his obvious intelligence and knowledge. When I read his book, that was confirmed, but most of all, I was impressed with his courage and determination. Like others facing dementia, he found himself alone. Even his wife could see only the positives at first. Yet, he motored on, seeking a diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did all of the physical things that help to keep dementia at bay—things like exercising, yoga, eating right and decreasing stress. But he did more. He moved closer to his grandchildren, increased his focus on spirituality and reached out to others, teaching and sharing. And then he started writing, joining that small group of men like Dr. Thomas Grayboys, Rick Phelps and Charles Schneider who tell about dementia from the inside out. As caregivers, Jim and I can only write about dementia from the outside in. We join all dementia caregivers in our gratefulness to men like Kirk who give of their very soul as they tell us what it is like to feel dementia encroaching. Thank you, Kirk, for your heartfelt story. We recommend it to not only all PD and LBD caregivers, but to the medical community as well.”
Helen & James Whitworth
Authors, A Caregivers Guide to Lewy Body Dementia
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.
Order in book fomat at http://www.pygmybooks.com/BuyBooks.html (page 2) or http://www.amazon.com/Window-Opportunity-Reality-Parkinsons-Dementia/dp/0984206345/ref=tmm_pap_title_0. Order in ebook format at http://www.amazon.com/WINDOW-OPPORTUNITY-reality-Parkinsons-dementia-ebook/dp/B00JG577PG/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=.
