I should mention that, during this time, I was blessed with some great friends. John Corcoran, who I met shortly before going to work at Federated Department Stores Merchandise Services office in Manhattan. John, who was to become like a younger brother, joined me a couple years later as part of the corporate consumer electronics merchandising team working for Bob Whitehouse, a charismatic, fun-loving, brilliant man who became a role model (and memorable friend) to both of us. I had also developed what would be life-long friendships through our church with two outstanding (in every conceivable way) individuals, Nelson Murphy and Bob Glockler. Both were very involved in leadership at the church and are men of superior character and integrity.
One day I was talking with Nelson and happened to share my dismay over the stupid mistake I had made with the sand. I had not really thought about what I might try to do about the problem (I preferred simple solutions and none came to mind). In hindsight, it was not surprising that Nelson went immediately into "Full Nelson Mode". Fortunately for me, this did not involve any "pretzel-like" wrestling holds. He analyzed the problem and quickly surmised that the only real solution would involve removing the gravel/sand mixture and sifting out the sand. This would never have occurred to me because it involved way too much actual effort (far beyond what I would even be willing to ask my boys to undertake). As an aside, Nelson later tackled the problem of his (steep) eroding earth and gravel driveway by building the eighth wonder of the world, the so-called "Great Wall of Oakland", a structure that closely resembled (in size of stones and skill of craftsmanship if not total size) it's counterpart in China.
The next thing I remember is Nelson pulling in my driveway with a custom-made (with 2x4's and mesh large enough to retain the gravel) sieve, ready to go to work. Naturally, I was very appreciative and, under the circumstances, felt obligated to help. I don't recall if I attempted to recruit my boys, but I suspect that I did. The job took many days of hard work to complete, but when we were through, I had learned a number of important lessons, one of which was to never again share a problem with Nelson without seriously considering the consequences.
Since you are obviously still reading, you may be wondering where I am going with this. What I thought I would share is that, for some time now, there are periods of time when my mind feels like that sand-ensconced gravel. A friend of mine would call it "gafarkled" (I don't think spell check will help with that one). An acquaintance in the PD world probably described it best as "clognition".
Shortly after I was diagnosed with PD (over five years ago) I began experiencing unusual cognitive problems. The first time I noticed it was in a business meeting not unlike hundreds I had been in over the years. What was different in this case was that after a while I found that I was no longer able to process and retain what was being said. This and other problems were to repeat themselves in the coming weeks and months.
Within the next year, I started to think about writing a book to share my experience with these problems and what I had learned about them. Since cognitive issues are such a pervasive problem affecting so many people, I thought there might be interest in a book of this type and that there might be something in it that would be helpful to patients, families, or the medical community.
To make a long story less long, I have recently completed this book. It is currently being professionally proofed and formatted and I plan to make it available in ebook formats in the near future and, hopefully, in hard copy in the coming months. The following is the introduction to that book which I have titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia:
INTRODUCTION
I was diagnosed with Parkinson’s disease (PD) in
2008 at the age of 59. I am now 64
years old. A neurological exam in 2012
confirmed that I had also developed amnestic mild cognitive impairment (aMCI),
a condition characterized by memory (amnestic) problems more severe than normal
based on age and education but not serious enough to affect daily life that
often precedes Alzheimer’s disease, Lewy body dementia, or Parkinson’s disease
dementia. Clearly not good news, but
not really a shock either due to cognitive symptoms I had experienced since
shortly after my PD diagnosis.
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 that, for many PWP’s,
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, PWP’s. Few subjects strike fear in our hearts like
the fear of mental illness. 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?
Cognition
problems associated with PD had been discussed “in whispers and behind closed
doors” by both the medical community and PWP’s until recently. Even now, it is only beginning to get the
attention it deserves. It remains a
topic that many doctors are reluctant to discuss, making it difficult for
PWP’s, 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 about Dr. Thomas Graboys’, a highly-regarded and successful cardiologist in
Boston, and his experience with both PD and lewy body dementia (which I was to
learn is the category of dementia linked to PD).
I was struck
by the “unflinching honesty” and courage that it took for Dr. Graboys (with the
help of Peter Zheutlin) to write this book.
In describing the context for how he became aware of having these
diseases, he freely admits how 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
provides comfort to patients as well as a very useful context for providing a
superior level of care. He shares
heart-wrenching notes from family members that share the very real and
emotional impact on their lives made by the changes they saw in Tom. In the chapter titled “End Game”, Tom speaks
to the undesireable 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”, in 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 that 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 (a drug prescribed for moderate to severe dementias). When my wife and I visited the National Institute of Health’s
(NIH) National Institute of Neurological Disorders and Stroke (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 (which I had started using in September 2011). At my next appointment with my movement
disorder neurologist at the University of Colorado Hospital, Dr. Benzi Kluger,
in March 2013, he 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 NIND’s had told me and the
positive comments Dr. Graboys had mentioned and agreed to give it a try.
I have been
taking Namenda for about three weeks now and have experienced noticeable
improvements in clarity, acuity, mood, and working memory. 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 which has come to mean so much to me.
When I first mentioned my interest in writing this book
to Dr. Kluger a few years ago, I was encouraged when his reaction was that he
believed it “could be important”. I began work on this project on a number of
occasions without the clear focus that I needed to have a chance to live up to
his comment. It now seems that the time
is right.
This book includes a variety of subjects related to both
PD and the cognitive impairment that frequently accompanies it. I share details about my personal journey,
including excerpts from my journal, and information I have obtained along the
way (in particular, related to PD dementia and the role of stress) that has
been helpful to me and interesting or useful (or both) to fellow PWP’s and care
partners as well as what I have been experiencing and how I feel. I write about the coping strategies I have
employed and how they have benefited me.
I am hopeful that the chapter on “Searching for Clues” will be thought
provoking in terms of possible causative factors in my past as well as
some theoretical speculation. There are
recommendations I have developed for both PWP’s and care partners based on my
advocacy work and feedback I have received. The chapter on deep brain stimulation is included because it is a
subject that many people associated with Parkinson’s want to know more
about. I will include a chapter that
reveals the experiences of families who are dealing with or have lost loved
ones to Lewy body dementia and another that speaks to “end of life” decisions
and issues and ends on a personal note with my personal thoughts on faith.
I was pleased to learn that there are others who share my
desire to remove some of the mystery from cognitive problems, especially
dementia. Dr. David Hilfiker
(davidhilfiker.blogspot.com) is writing about his experience with Alzheimer’s
in an attempt to remove the stigma from this disease.
Window of Opportunity: Living with the reality of
Parkinson’s and the threat of dementia
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.In the epilogue, I mention that I plan to continue to post blog articles as part of the continuing story. I have decided to do this under the title of this article. I will share availability details as they develop.
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