Benzi & Me

 

5-18-2021

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 provide feedback of 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.