Wednesday, October 3, 2012

The Elephant in the Room: My Story

I was in a business meeting in early 2008 in Colorado Springs.  I was Marketing Director for and an agency that provided marketing and advertising consulting for organizations all over the U.S.  I had served previously in the same position for two Christian publishing companies since moving to Colorado with my wife to seek "quality of life" in 1994.  We had purchased a log home surrounded by ponderosa pines with a wonderful view of Pike's Peak and were enjoying our new "mountain lifestyle" including proximity to our two adult boys and their families in the Denver area.  This was a welcome respite from our hectic life in New Jersey where our boys did most of their growing up and I commuted into Manhattan for eleven years.  I had held positions at Federated Merchandising Services (a division of Federated Department Stores) as a corporate merchandise manager and American Express where I was a vice president for their direct mail catalog business.  My office at Amex was in the World Financial Center directly across from WTC1 (tower 1 of the World Trade Center).  I did a fair amount of traveling in those days, but when I was home I frequently had lunches, took friends up to the roof to enjoy the view, or took the PATH train into or out of one of the sub-levels of WTC1.  I was at Amex the day of the first attempt by terrorists to bring down WTC1 in 1993.  This horrific preamble to 9/11 was one of the key factors influencing our decision to move.

So this meeting was not all that different from hundreds I had attended (or led) in my 38-year career (including two years off to earn an MBA).  However, the circumstances were different in that I had been diagnosed with Parkinson's disease (PD) a month or so earlier. I had made an appointment with a movement disorder neurologist at the University of Colorado Hospital (UCH for an evaluation of my essential tremor (ET) condition (a troublesome, but by comparison, fairly benign condition involving "action tremor"), which was the only thing to which I could attribute the intense fatigue and disproportionate reaction to stress I had been experiencing.  Much to my surprise, I was told that I now was dealing with early stage PD in addition to ET.

During the course of this meeting, I started having trouble "processing" the things I was hearing and became literally unable to participate.  At this point, I did not really know what to expect with regard to PD symptoms, other than that "everyone is different" in terms of their reactions to the disease.  Like most others, I spent only a few minutes with my doctor following my diagnosis and was basically on my own until my next appointment in three months.  I decided that I would learn as much as I could through books, other patients, doctors, and the internet about PD hoping that this would help me to better understand the changes I was experiencing.  In the coming weeks and months I would learn a great deal that was enlightening and helpful, but found very little pertaining to cognitive issues.

The problems with processing and storage of verbal information continued.  It seemed that I would do OK for a while and then gradually just "shut down".  This would have been distressing in any case, but was even harder to accept based on the level of experience I had managing high levels of responsibility.  One day I was working at my desk and was answering the phone while others were at lunch.  I was working on my computer and taking a variety of messages at the same time.  I must have reached that "overload" point again because I looked for a message I had written for one of my co-workers so that I could leave it in his office for him.  I checked all over my desk, on the floor, in the wastebasket and couldn't find it anywhere.  Finally, I decided to check in his office, though I had no recollection of taking it there (around the corner and down the hall).  I opened his door and there it was on his desk.  

Other memory events ensued in the coming months leading my UCH doctor to refer me for a neuropsychological exam (which is designed to provide a "snapshot" of regarding all brain functions) at the end of 2008.  To make a long story less long, I received a fedex envelope today with the results of my third "neuropsych" exam.  While most of my functioning is normal or better (in some cases much better), the neuropsychologist reported that the results continue to be consistent with a condition called amnestic mild cognitive impairment (aMCI).  For those unfamiliar with this term, it sounds fairly benign.  However, for PD patients, it is frequently the last stop on the train before dementia (for more information, see my post on Parkinson's & Dementia).

Obviously, the potential for onset of PD-related dementia is my "elephant in the room".  This may explain some of my other posts, including Living in the Moment.  I am doing my best, but I defy anyone to ignore the possibility that they will lose their ability to communicate with or even recognize those they love most.  I have been using the only FDA approved medication for early to mid-stage PD dementia, Exelon (in patch form), for about a year.  I have found that it helps improve memory and clarity, sometimes more than others.

I intend to share more thoughts and insights regarding my situation as it evolves in future posts in hopes that they will be interesting and informative to PWP's, care partners, families, and the medical community.


  1. thanks Kirk. Appreciate your courage.


    1. Thanks Bob. I don't consider myself to be courageous in this regard. However, I am committed to shedding light, if possible, on this subject which I know is a concern of most PWP's and care partners.