ON THE CUTTING EDGE: A Parkinson's Disease Discussion

ON THE CUTTING EDGE: A Parkinson's Disease Discussion

Presented by Michael S. Okun

Dr. Okun will enter into a discussion based on his new book: Parkinson's Treatment: 10 Secrets to a Happier Life.  The book addresses how to live well with Parkinson's including a comprehensive review of new and emerging therapies.

DATE:  FRIDAY, SEPTEMBER 20

TIME:  11 AM - 12:30 PM

LOCATION:   BETHANY LUTHERAN CHURCH

   FELLOWSHIP HALL

         4500 E. HAMPDEN AVE.

ENGLEWOOD, CO

RSVP: PARKINSON ASSOCIATION OF THE ROCKIES

303-830-1839 OR

info @parkinsonrockies.org

303-833030-1839 or email

Michael S. Okun, M.D.

Michael S. Okun, MD, is currently Administrative Director and Co-director of the Center for Movement Disorders and Neurorestoration which is part of the Center for Translational Research in Neurodegenerative Diseases, the McKnight Brain Institute, and the University of Florida College of Medicine. Dr. Okun is  dedicated to an interdisciplinary care concept.  Since 2006, he has served as the National Medical Director for the National Parkinson Foundation.

Dr. Okun has dedicated much of his career to the development of care centers for people suffering with movement disorders. He has enjoyed a prolific research career and he has participated in pioneering studies exploring the cognitive, behavioral, and mood effects of deep brain stimulation.

Dr. Okun is considered a world’s authority on Parkinson’s disease both in the areas of clinical care and in research.  He has answered over 20,000 patient questions on the National Parkinson Foundation free forum, Ask the Doctor.

Michael S. Okun, MD, received his B.A. in History from Florida State University, and his M.D. from the University of Florida. He completed an internship and Neurology residency at the University of Florida. Following residency he was trained at Emory University in movement disorders.

Notes from the Twilight Zone: Mountain Climbing

When I first began working on the book that was to become Window of Opportunity, I wrote a chapter about an experience we had in the mountains of central Colorado:

Linda and I decided to take a camping trip the weekend of August 17, 2007 to celebrate our 38^th wedding anniversary that was coming up on August 23.  We had become fairly avid tent campers and hikers in our 13 years in Colorado and had visited quite a few different places.  For this occasion we chose a campground at the base of Mt. Elbert, the highest “fourteener” (14,000 feet or more in elevation) in Colorado.  After a first night in a somewhat less desirable campsite, we moved to an idyllic one that must have been about an acre in size surrounded by lodgepole pines by a stream that rushed down from the mountain.  We took some short hikes on Saturday with our sheltie, Little Fox, and enjoyed relaxing with the symphony of the cascading water as a backdrop.  We decided we would get up early the next day and hike up at least part of the mountain.

The sunrise was spectacular on Sunday morning as the north Mt. Elbert trailhead beckoned only a few hundred yards away.  We grabbed our hiking poles, water, and backpacks and got started.  Since our campground was at 10,000 feet and the summit was 14,443 feet, we had no real intention of “summitting”.  We left Little Fox at our campsite because we were concerned about how he might handle the altitude.  It took us a couple hours to make our way up the steep trail through the forest to the timberline at about 11,000 feet.  The trail looked foreboding ahead as it wound through steep, rocky terrain.  We were already breathing hard after short distances and considered turning back.  However, we met some people already on their way down who encouraged us, telling us the climb was well worth the effort.  We decided to go on a bit further.

Breathing was becoming increasingly difficult as we continued our climb.  We developed a strategy of picking a destination at progressively shorter distances ahead as our goal where we stopped to recover.  We probably would have turned around and headed back down if not for the intermittent passers-by who told us how glad we would be when we got to the top.  At some point, we threw caution to the wind and decided to go for it.

The trail got increasingly steep and treacherous (we later learned that there was a southern route that was far less challenging) and we were disappointed by a couple “false summits” where we reached a crest only to find we still had quite a distance left to climb.  But, at this point we had accepted the challenge and persevered until we reached the top at about noon.  We put on the jackets we had packed in our backpacks, drank our water, and ate our lunch as snow flew lightly around us and we enjoyed the view with a handful of hearty souls.  We had someone take a picture of us to commemorate the moment.  We both felt exhausted, but also exhilarated from the sense of unexpected accomplishment.

While at the summit, we learned of the southern route and decided to take it in spite of the fact that we would have to hike miles across the base of the mountain when we got down.  The weather looked good and we still seemed to have sufficient water.  We were feeling good about ourselves as we started back down on a much more relaxing trail.

The problem with going downhill is that it uses different muscles and also puts pressure on the knees and hips.  Our toes started to become sore from rubbing against our boots.  We were becoming a little more concerned when dark clouds appeared suddenly on the horizon.  The wind quickly increased to gale force as we heard the first echoes of thunder.  Realizing that we were above tree line and totally exposed, we began to run.  I was really starting to hurt and lagged behind Linda.  We stopped to put on our rain parkas as it began to sleet heavily.  We continued our soggy jog for what seemed like forever until the rain finally stopped.  We were above tree line and knew that we were still in danger, but stopped to rest for a few minutes.  I attempted to sit on a rock, failing to realize that the terrain was still very steep, and almost fell over backwards.

An additional problem developed as we realized we were almost out of water.  It was going to take another couple hours just to get to the base, then another three hours to traverse back to our campground.  Two younger men who we had seen farther up the mountain came by and asked if we were all right.  We explained our water situation and asked if they knew if there was a place for us to get a refill.  They were parked at a lot close to the base and offered to share their supply!  Though we were now sore and thoroughly exhausted, we made it to the bottom and hiked the six miles back to our tent, where we found Little Fox anxiously waiting.  It was now 7 pm and we had been gone thirteen hours.

After resting and drinking what seemed like a gallon of water each, we started to pack up so that we could begin the drive home.  As we were loading the car, the men who had helped us pulled up in their car.  We had told them where we were camped and they drove well out of their way to make sure we got back safely.  We were so touched and grateful for such amazing kindness!

As I reflect on this experience now, especially in light of my desire to write this book, I think that it was significant well beyond what I realized at the time.  I had been excited about the achievement of climbing the mountain and surviving the tribulations of the trip down.  I was mystified, and continue to be, by the unexpected concern shown by those two strangers who we will never see again. 

I can now see God’s hand clearly in these events.  We had a chance to prove to ourselves that we can accomplish more than we may have thought possible if we persevere.  We saw that, when the going gets tough and our plans prove inadequate, there is still hope.  And, even when hope begins to dwindle, God will provide.  As events continue to unfold, this knowledge is a source of great comfort and encouragement to Linda and me.  Within months after climbing that peak, Linda and I would enter a valley unlike any we had encountered before.  In that valley we would find an unexpected crossroads.  We would have no map to help us decide which way to go or see what we would find at the end of our journey.  This would not be the first time we would forge ahead armed only with our trust in God. 

____________________________________________________________________

We returned to Mt. Elbert last weekend with our close friends, Bill and JoAnn Schmitz, and were able to get the same campsite we had in 2007 at Elbert Creek Campground (one of the top rated campgrounds in the U.S.).  We have camped over the years at many beautiful places with Bill and JoAnn, but they had never been to this campground.  After  setting up their newly acquired pop up camper around 8 pm on Friday night (they are both still working), we enjoyed the campfire while enjoying the sound of the rushing water as a backdrop.  The next morning, after seeing the campsite in the light of day, including our private "alcove" on the shore of the stream, they told us that this was the best camping spot they had ever seen in Colorado.

Linda and I had talked about trying to hike all the way up to the top again, but this time we would park in the south parking lot and take the easier trail both ways.  We had scoped out the parking area the day before our friends arrived and were ready to go.  This time we would be properly prepared and have plenty of water.

In hindsight, I don't know what I was thinking.  We had heard about a new movement disorder team in the Denver area, Dr. Monica Giroux and Sierra Ferris, and their exploits leading groups of patients on climbs at places like Mt. Kilimanjaro in Kenya, so I suppose I thought doing Mt. Elbert (which I had already done before) should be realistic.  Also, Linda and I had walked with our son and three of our grandchildren in the "Bolder Boulder" 10K fundraiser on Memorial Day.  We had been getting plenty of exercise during the summer.  What I failed to take into account was the fact that, although I completed it, I was a wreck after walking that 10k on level ground at around 6000 feet elevation.  

Luckily, Bill (who has climbed quite a few "fourteeners") told me he wasn't planning to go to the top and would prefer to do some less aggressive hiking.  I acquiesced, saying that we would do whatever they would like to do.  So we headed up the Colorado Trail from our campsite at 10,000 feet elevation toward the north Mt. Elbert trailhead, which starts below the treeline at about 11,500 feet.  The idea was to continue on the Colorado Trail rather than going up Mt. Elbert.

We set off at a fairly brisk (for me) pace.  I was using my ski poles to help with balance and to propel myself up hills (I use rubber-tipped walking poles at home, which I highly recommend for PWPs).  The trail became narrow and winding as we ascended.  It didn't take long for me to "feel the altitude" which increased my "unsteadiness".  The trail, which was carved into the side of the mountain, was steeply uphill on one side and downhill on the other, and I started to become apprehensive, especially when I had to stop to let someone go by.  That said, I continued up the trail through many switchbacks until I realized I should turn around and go back down while Linda, JoAnn, and Bill went on.  As it turned out, this was a good decision.  For those who haven't done this kind of thing, going downhill is often more difficult than going up.  My legs became increasingly "rubbery" and by the time I got to the bottom, I was doing the "PD shuffle".  There was no amount of adrenaline or commitment that would have allowed me to make it up that mountain.

I am just now realizing that I started this article with no clear idea about what point, if any, I would try to make.  Not that there has to be a point, but I usually like to at least pretend that there is one.  On one hand, I am disappointed that I was unable to complete a repeat performance of our accomplishment in 2007.  On the other hand, I had to tell myself that it was OK that I could no longer do that and find the joy in the experience.  We had a great time with wonderful friends in a breathtaking (literally and figuratively) setting.

A quote that my friend Bill likes to use from the movie "Babe" comes to mind:  

"That'll do, pig, that'll do".

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:

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.

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 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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