Book Excerpt - Window of Opportunity: Living with the Reality of Parkinson's and the Threat of Dementia | Lewy Body Dementia Association LBDA

Book Excerpt - Window of Opportunity: Living with the Reality of Parkinson's and the Threat of Dementia

From Window of Opportunity: Living with the Reality of Parkinson's and the Threat of Dementia by Kirk Hall. Reprinted with permission.

Nine months after our Mt. Elbert mountain climbing experience, in May 2008, I was in a business meeting in Colorado Springs. At that time, I was marketing director for an agency that provided marketing and advertising consulting for organizations throughout the United States. This meeting was not all that different from hundreds I had attended (or led) in my 38-year career. However, the circumstances were different in that I had been diagnosed with Parkinson's disease (PD) about a month earlier. I had made an appointment during April 2008 with a movement disorder neurologist at the University of Colorado Hospital (UCH) for an evaluation of my essential tremor condition (a troublesome condition involving potentially debilitating "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 that May meeting, I started having trouble "processing" the things I was hearing and became literally unable to participate. At that time, I did not really know what to expect with regard to PD symptoms, other than having been told that "everyone is different" in terms of their symptoms. Like most others, I spent only a few minutes with my doctor following my initial 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 about PD, through books, other PWPs, support groups, doctors, and the Internet, 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 information 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 experience I had in managing high levels of responsibility where meetings were a way of life.

One day I was working at my desk and answering the phone while others were at lunch, working on my computer and taking a variety of messages at the same time. I must have reached an "overload" point when 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.

I had an interview with another company during this time. It was a company I had been interested in for several years, so part of me was looking forward to it. However, I didn't feel particularly comfortable about going to the interview due to the problems I had been having. Plus, I knew that the stress of a new job (if I got an offer) was not going to be a good thing. I rehearsed for the interview quite a bit because I didn't trust my memory. Unfortunately, another strange "memory event" occurred while I was driving to the interview. I knew that a turn I had to make was coming up. I couldn't remember anything else until I became aware that I didn't know where I was. I had no recollection of passing the point where I was supposed to turn. I kept going straight and eventually made it to the right place, but was a little bit late (not my style). I went through the interview process, but did not do well and did not get an offer. In hindsight, that was for the best.

The theme of "sensory overload" keeps coming up in my attempts to describe the nature of my problems. During a vacation in California with my wife, one of my sons, and his four children, we spent a day at Disneyland. I was still having a good time during the "Jungle Cruise" (one of my favorites at Disney World, which we had been to twice many years ago). However, toward the end I started to sense that same "overloaded" feeling, and I began to process more slowly until I literally became totally dependent on Linda to lead me from one venue to the next. I guess I should not have been surprised that this happened, given the crowds of people, high volume of ambient noise, and so much other concentrated sensory bombardment.

On a variety of occasions going back to the first year I was diagnosed, my doctors described me as a "high-functioning" patient. (I suspect that this may be their code word for "pain in the neck" because of all the questions I asked.) Still, I have been told that intelligence and level of education are thought to play a role in delaying progression of cognitive/memory problems connected with PD. This subject was addressed at the World Parkinson Congress in Montreal during October 2013 by Dr. Janis Miyasaki, who stated that, while typical patients tend to deteriorate at a fairly steady rate over time in terms of their ability to function at previous levels, high-functioning patients tend to deteriorate much more slowly over time and then decline more precipitously.

Obviously, the potential for onset of PD-related dementia is my "elephant in the room." It took an epiphany of sorts to stop focusing on the possible unpleasant outcomes associated with this information. Dr. Kluger's practical suggestion was that I should "keep doing what I'm doing" and "hope for the best." It was time for me to take ownership of the situation and decide what to do next.