Friday, August 9, 2013

Notes from the Twilight Zone

During the summer of 1985 (or thereabouts), we had a new concrete patio put in by our pool in Oakland, NJ.  Our boys were 13 and 10 at that time.  The old patio had been pavers set in sand.  They did a nice job, but left a pile of sand on the large gravel rocks surrounding the new patio.  The smart thing to do in this case would have been to shovel the sand into my wheelbarrow (or better yet, have my boys do it) and remove it.  But no, not me.  I took the road less traveled (the dumb one) and it did make all the difference.  I told myself it would not be a problem to simply disperse the sand in the gravel-covered area and it would be absorbed, wash away, or otherwise magically disappear.  As I was soon to learn, this did not work, and I was left with an unsightly mess where water accumulated when it rained.

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:


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.

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 was 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 (PWP’s) 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 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 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 ( 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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