Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

An Open Letter to Linda Ronstadt and Neil Diamond

 

 

Dear Linda and Neil,

 

I know it is highly unlikely that you will ever see this but I am going to write it with the hope that you will.  

I am going to talk to you both as friends, though we don’t know each other.  You may not know this yet, but by virtue of having PD you have become members of what I like to think of as the “PD family”.  It took me a couple years to realize this.  Any time I am with fellow PwPs (people with Parkinson’s) and  their care partners (our term for caregivers) there is a palpable sense of love and caring unlike anything I have experienced outside my immediate family and close friends.  We are willing to be honest and open with each other because we know we are in this together.  We want to do anything we can to help each other in ways that are both large and small.  We want to improve the quality of our lives and those of our families and loved ones.   This gives us strength and hope.

My wife (also Linda) and I attended our first World Parkinson Congress (WPC) that was held in Montreal in 2013.  We also attended the 2016 WPC that was held in Portland. Preparations are currently under way for the 2019 WPC that will be held in Osaka, Japan. These are amazing international events where members of the PD medical and research community from all over the world, representatives of Parkinson organizations (like the World Parkinson Coalition,  Michael J. Fox Foundation and the Parkinson’s Foundation) suppliers of PD goods and services, as well as PwPs and care partners.  It was at that first (for us) WPC that I really began to realize the scope and uniqueness of the universal caring that I am trying (inadequately) to describe.  It was overwhelming.  It was also at this time that I became fully committed to trying to find ways to “give back”.

My hope for both of you is that you will find ways to experience this yourself.  For some, there is a natural tendency to isolate themselves and deal with PD in private.  That may not be the case with you.  If it is at all true for you, I strongly encourage you to fight that urge and engage the “PD world”.  If and when you do that, it benefits us all.  I realize that I may be “preaching to the choir” since there are other celebrities who are highly engaged (Michael J. Fox, the late Muhammad Ali and more).  If you are interested in exploring ways you could become involved, there are many resources available, the most obvious being to talk to someone who lives in the PD world, like Michael J. Fox.  I am sure he could come up with a variety of good ideas.  Another option would be the Executive Director of the World Parkinson Coalition, Elizabeth “Eli” Pollard (email: eli @worldpdcoalition.org) who is involved with just about every aspect of the PD world.

She could provide input regarding a specific idea.  There is an organization that provides singing opportunities  and voice therapy for PwPs called Tremble Clefs.  I sang with them at the last WPC at Portland in 2016.  The driving force behind this organization is Karen Hesley (khesley@hotmail.com) who created a group in the San Diego area.  Tremble Clefs is therapeutic for voices as well as cognition and often has a very positive effect on quality of life.  Perhaps you would be willing to explore ways to become involved in expanding this life-changing program.

I wish you all the best in your PD journeys.  Thanks for listening.

 

Sincerely,

Kirk Hall

PD Advocate

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Kirk Hall

Legacy

It is 4:30 in the morning.  I do a lot of my “deeper” thinking during the night.  It seems like I have better “clarity” at that time.  Possibly because there is less mental traffic to clog my circuitry.  Another possibility is that my judgement is not great at that time, which leads to ideas that “lose their luster” in the light of day,

In any case, I have been thinking about the above topic since writing the piece yesterday morning about Robin Williams.  I think most of us, or at least some of us, think about what our legacy will be from time to time.  That may lead to thinking further about what we would like it to be.  I spent a lot of time in my business career doing strategic planning.  One of the most important parts of this process was deciding “where you were trying to go” as an organization.  Later in my career I had a business that helped people with career planning which often started with the individual answering the question “what do I want to be when I grow up”.  In other words, developing an individual strategic plan.

That is all any of us can really do when it comes to our legacy.  Imagine someone describing our legacy at some point in the future and what we would like to hear them say.  Then we at least have the opportunity to do things that might lead to those comments after we are gone.  Because legacies can’t really be built.  They are described in hindsight.

When I look back at my career “pre-PD”, it seems to me that much of what I did in my business career was preparing me for what I have been trying to do as a PD advocate (my current job description).  If I had died at 59 instead of being diagnosed with PD, I can’t imagine my legacy being very memorable when it comes to my career.  Actually, I think my legacy would have been the wonderful boys that Linda and I raised.  I still believe that will be our most important legacy.

So where am I going with this?  I better get back to that or I will lose the thoughts that got me out of bed.  Regarding my “advocacy career”, I feel that I am doing work that is personally meaningful for the first time in my life.  That is a real gift!  I don’t spend a lot of time thinking about what I am going to do.  One thing leads to the next thing and so on.  It has been that way since I was diagnosed.  It has become more challenging to maintain my “forward momentum” the last couple years.  But each time I have “slowed down”, it seems that I eventually have been motivated to “re-enter the fray”.  I don’t really know if anything I have done or will do has any lasting value.  That is not and can’t be my motivation.  That will be for whoever is in charge of describing my legacy to decide.  I am just grateful to have had the opportunity to finally do something that seems important.

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Kirk Hall

Robin Williams' Legacy

  

 

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Robin Williams will be remembered by the general public for his “unearthly” spontaneous comedic wit as well as superlative acting in movies that include Dead Poet’s Society and Good Will Hunting (I loved both of these, but would also include another personal favorite, the classic comedy movie RV). 

In the PD world, I believe his legacy has been “etched in stone” thanks to a letter written by his wife, Susan, to the Neurology journal.  I posted this link of my PD facebook page last week.  It has been viewed over 1000 times and has been shared 11 times.  For my FB page, this is an enormous response, which made me wonder: Why?

One of the reasons is Williams’ popularity and the tragic nature of his death.  There has been a great deal of speculation about his illness and what may have motivated his actions at the end.  Susan fills in the blanks in a thoughtful, informed letter she sent in hopes that, by doing so, awareness could be raised that will help others in the future.

So, the second reason is that, by sharing Robin’s experience in painful detail, she has done the PD and Lewy body dementia worlds a great sevice.  As an advocate with (at least) mild cognitive impairment, the distinction between PD and dementia with lewy bodies (DLB) is something I have been personally interested in for almost ten years.  It motivated me to write a book on this subject that included my personal experience.  It led to my relationship with the Lewy Body Dementia Association (LBDA) and participation in a webinar designed to build awareness about LBD/DLB in the Parkinson’s world.

The type of dementia experienced by most people with Parkinson’s (PwPs) falls into the LBD category.  This is something all PwPs who want to be active participants in the management of their disease need to know as 85% or more of PwPs will experience LBD/DLB during their lifetimes.

LBD is not the same thing as Alzheimer’s (AZ).  LBD is the second leading type of dementia after AZ.  It is a terminal condition.  LBD falls into a category of illness called “atypical parkinsonism”.  These illnesses have symptoms similar to PD, but the causes and treatment are different.  Some medications used for PD can be very harmful to people with atypical parkinsonism, therefore it is very important to get an accurate diagnosis.  This poses a problem as “parkinson’s plus syndromes” (as they are also known) are usually difficult to diagnose.  This is yet another reason why it is crucial to work with a movement disorder neurologist as opposed a general of different specialty neurologist.

Awareness around this subject is growing which is a very good thing.  For more information, visit the LBDA website.

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Kirk Hall

Benzi and Me

   

 

 

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I first met Dr. Benzi Kluger late in December 2009, over a year after I had been diagnosed.  Eight years later, I would like to share my thoughts and reflections on our relationship. 

Clearly, neither of us would have expected what has evolved.  I was a fairly typical (anxious) new PwP with lots of questions.  He was a new addition to the movement disorder team at University of Colorado Hospital (UCH) who looked like he could be Jerry Garcia’s brother.  He also had experience and interest in cognitive issues which was #1 on my anxiety list.

Over the next few years we got to know each other.  I admired his commitment to the PD world.  It seemed that whenever there was an opportunity for him to engage a PwP group, he would be there.  Over time, he developed an obvious ability to connect with his audience.  Benzi communicates with a unique style that combines knowledge, insight, humor, honesty, and caring.  He makes difficult subjects understandable.  He tells people things they don’t always want to hear without scaring them. 

There was a turning point in our relationship at a conference in 2012, I think.  I was sitting at a table having lunch by myself when Benzi asked if he could join me.  I’m not sure why, but I could hardly believe he would take the time to talk to me as a “real person” (not a patient).  It wasn’t anything he had done that made me feel that way.  I guess it was just how I had come to think of doctor/patient relationships at that time.  The trajectory of our communication gradually changed after that. 

I think there were two things in particular happening concurrently in the 2012-13 time frame that solidified our connection.  One was the evolution of our common interest in doctor/patient relationships into Benzi’s leadership role in PD palliative care.  The second was his commitment to act as a "medical consultant"  and provide feedback for a book I was writing.  Without reviewing all the details (they are available in another post), I was a partner of sorts in the development of PD Palliative Care, the current clinical research study, and the first International PD Palliative Care Conference.  Regarding my book, Benzi’s advice stopped me from seeking publication prematurely.  In the following months I was able to finish a manuscript that felt “right” and he agreed.

I had asked Benzi to write a forward for the book. When I read it for the first time, I was totally “blown away”.  It was hard to believe that a man I admired and respected so much would say these things:

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

 

Linda and I have “enrolled” in the PD palliative care (PC) clinic at UCH and are very happy with the care we are receiving (remember, palliative care is not hospice, in case you were wondering).  The PC team is playing an important role in helping us to maintain a good quality of life.  When it comes to the final chapter, hopefully many years from now, I look forward to having my friend Benzi in my corner.

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Kirk Hall

PD Palliative Care Clinical Research Study Update

 

 

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Two years ago I wrote an article regarding a new patient-centered research study for which recruiting had begun.  This exciting study is now about 50% complete.  This article will recap what has taken place and what remains to be completed.

The study itself evolved from a series of events that took place during 2013-14.  During the spring of 2015, after the study proposal had been submitted to PCORI, Dr. Kluger (lead for the study) asked me to put together an “advisory council” of patients and caregivers to participate and provide feedback on all aspects (design, implementation, analysis, and outcomes report) of the study.  Recruiting volunteers for this task was not a problem once the purpose of the study had been explained as well as the potential impact on the PD community.  This team included patients at varying levels of progression and experienced caregivers, some of which had lost loved ones to PD or PD-related issues (i.e. PD dementia).

We all provided input that was used in the development of the proposal for the study, which was approved by PCORI mid-2015.  Before the study started, we provided input regarding the PD Palliative Care team structure and some of the tools they planned to use, as well as detailed feedback on the planned interaction with participants.  We met periodically to review progress with the research team.  Regarding recruiting, Dr. Kluger told us that our meetings with area support groups was responsible for 90%+ of the seventy study participants (the total for all three sites was 210) in the Denver area.  I would estimate that we (Malenna Sumrall, Dr. Kluger, and me) held around twenty meetings starting late 2015 through mid-2017 for the purpose of educating our PD community regarding this study and seeking their participation.

If memory serves (which it often doesn’t, but I think I’m close), it was September of this year when Dr. Kluger met with the council to let us know we had met our recruiting goals.  The next step would be for the research team with assistance from council members to analyze all the interviews that were held with the study participants in each location.  So we have been reading copies of the interviews with patients and caregivers from both the study (received care from the palliative care team) and control (received standard care from their doctor) groups.  We make notes for each and meet with the research team (in person or by phone) to review our observations and feedback as patients and caregivers.

This part of the study is exciting as we start to see trends and themes emerge.  It is very gratifying to part of this process because it is obvious that our experience and insights provide real value.  I am not sure how long it is going to take to get through all the interviews, but I would guess through mid-2018.  At that point we will be able to summarize the results of the study and provide conclusions.

I know there is a lot of interest in the outcome of this study.  While I am not able to share anything specific, let me just say those of us who support the PD palliative care team concept are extremely encouraged by what we have learned to date.  Stay tuned!

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