April is Parkinson's Awareness Month!



Parkinson's Global Community Conference

       

                            

This conference, which was held March 2-4 at the scenic Keystone (CO) Conference Center, was a huge success.  It was the first time that a conference of this magnitude has been held in the Denver area. or anywhere else as far as I know.  It was made possible by communication between organizers of the Parkinson's Symposium being held at the same time and place and Parkinson Association of the Rockies (PAR) board member, Barbara Mendel.

The conference featured internationally know Parkinson's doctors, scientists, and researchers speaking on topics of importance to the Parkinson's community of  people with Parkinson's (PWPs) and care partners in attendance. Those topics included updates on the latest research and medication developments, caring for caregivers, cognition and memory issues, deep brain stimulation therapy, and dealing with the challenges of life with PD. There were also interesting and helpful keynote presentations and panel discussions.  There was a great deal of emphasis on the ongoing need for patient participation in clinical research trials, information for which is easily and readily available online at foxtrialfinder.com.

In the Denver area, we are fortunate to have many well-respected movement disorder neurologists and neurosurgeons, many of whom were speakers. The sessions held by these doctors focused on information aimed at helping the many patients and caregivers in attendance with improving their daily lives.

I appreciated a presentation by Helen and James Whitworth, co-authors of Caregiver's Guide to Lewy Body Dementia.  Jim created the Lewy Body Dementia Association after he lost his first wife to the disease.  Together, they are committed to helping people understand this disease, which is the second most prevalent form of dementia after Alzheimer's.  Since both types of dementia most often associated with Parkinson's are in the dementia with lewy bodies (DLB) category, this is a subject that anyone touched by PD needs to understand, including risk factors that are different from Alzheimer's.

We were also fortunate to have Dave Iverson, renowned producer of Parkinson's features including My Father, My Brother, & Me who is now a contributing editor for the Michael J. Fox Foundation.  Dave's personal experience, extensive knowledge, and engaging style added greatly to the conference.

Kudos to Barbara Mendel, Cheryl Siefert (PAR executive director), and Cheryl's dedicated staff for planning, organizing, and executing a rewarding experience for all who attended.

WINDOW OF OPPORTUNITY UPDATE

One of my earliest posts was written about my experience with Deep Brain Stimulation (DBS) therapy.  Brain surgery is never an easy decision and should not be taken lightly.  I was fortunate that I had almost a year after I was approved for the procedure in early 2010 to "think about it".  During that interim period, something happened that helped me turn a "leap of faith" into a "hop of faith".

During that summer, I learned about a DBS support group in the Denver area.  The purpose of the group was to give prospective DBS patients an opportunity to interact with other patients and caregivers who had already had the procedure.  There was something about input from other people who had faced the same decision that went beyond professional input from doctors.  These people were not shy about sharing the pros and cons as well as how their lives were affected.

A few months after my DBS surgery in 2011, my first PD-related children's book, Carson And His Shaky Paws Grampa, was published.  The book led to unexpected opportunities to speak to PD support groups, first in Denver (where I live) and then in other parts of the U.S.  Very quickly I was pleased to note that fellow People with Parkinson's (PWPs) were clearly listening intently to what I had to say about living with PD and information that I had found to be helpful.  At some of these events I shared the podium with movement disorder doctors.  While the audience clearly valued what they had to say, they seemed to listen to me more intently.  

Now I am in the interesting position of wanting the PD world to know about my new PD book.  It is challenging to try to connect with this audience so that they will be aware of it and understand that the content may be very meaningful to them.  When I am standing in front of them, the connection is palpable, but it is different "from a distance".  If they read the book, they will understand why I wrote it and why completing it became so important to me.  More than anything else, I hope that fellow PWPs, care partners, and the medical/research community will find the book interesting and useful.  If I am really lucky, it will make a difference in people's lives.

When I think back to the response I felt when speaking to support groups, I am encouraged to "push through" the discomfort.  It feels like I am "singing my own praises", which I don't enjoy.

At the same time, like most people, I enjoy and appreciate positive responses.  With that in mind, I am going to share two responses to the book.  The first is written by a PWP friend who Linda and I have gotten to know as a fellow Parkinson Disease Foundation (PDF) Research Advocate (she is on the board).  With her approval, the publisher is using her comments as a synopsis for the book:

"Window of Opportunity" is the story of one person’s journey through the initial signs of cognitive impairment associated with Parkinson’s disease and the uncertainty of a future that includes a significant probability of dementia. Kirk Hall, only 59 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor.  He describes the long and challenging visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the nature and progression of his disease. His journal notes allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.

Diane Cook

The second is actually the foreword written by my doctor and medical adviser for the book, Benzi Kluger.  I was extraordinarily moved by his comments:

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

Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now available in ebook formats at smashwords.com and most other major online retailers for $5.99.  It is not yet available at amazon.

Pygmy Books is taking preorders at pygmybooks.com for shipment in late March.  The book price is $14.99.