Why Are You Shaking?

The whole room went silent and looked up as the blonde virtually exploded through the double doors leading into the lounge. She could not help but demand complete attention, intentionally or not. Her mischievous hazel eyes immediately assessed the occupants. I was delighted, if a little nervous, as she literally ran to me with arms outstretched, her long hair tousled and bouncing, mimicking her obviously carefree demeanor. Her smile was broad and genuine, and instantly took over her whole face and spread infectiously to all faces in the room. The petite beauty literally launched herself at my neck from several feet away. The hug was genuine, uninhibited by the sudden silence and stares being focused on her affectionate display. And with seemingly perfect timing the coquettish kiss that followed was a signal that the introductory affection was over and that she would be satisfied with my arms being loosely circled around her. Those in the room could return to their pockets of conversation, looking over at us occasionally to reassess her placement on my lap.

But the loud hum of conversations had not resumed long when a second, somewhat taller and more reserved, but just as beautiful, young lady entered the room. She was not as unabashedly boisterous but her entry was noticed by everyone. Her intelligent green/brown eyes signaled that she had purposely delayed her entry to avoid a competition of brashness with which she would not feel comfortable. Our eyes met and I was immediately embarrassed by the territory commandeered by the blonde in my arms. But the brunette did not let the apparently exclusive embrace dissuade her as she strode through the crowd and squeezed in close, placing her arms around my neck with obviously sincere affection. The competition for my attention seemed good natured and neither demanded exclusivity. They seemed used to vying with each other in their own distinct style. I felt both comforted and conflicted, but I was beaming inside and out to be the focus of attention of these much younger females.

While not immediately obvious, studied observation would have confirmed that the young ladies were sisters. Hailie, the blonde, is 6, and Taylor, her sister, is 9. They are the children of my nephew, Jesse, and his wife, Crystal, and we have a special bond that has grown since they were infants.

The occasion was a family gathering at Ocean Shores, a resort area on the Olympic Peninsula of Washington State. The 17 of us (4 generations) used the large lounge at the beach front condo complex for games, visiting, some meals and just hanging out. When the girls were around they were often next to, on, being chased by or wrestling with, me. And I loved it. And them.

It was in one of the more sedate moments that my grand-nieces (I think that's right) almost simultaneously inquired, "Are you cold Uncle Bob? Why are you shaking?". It was a logical question for two young girls unfamiliar with disability and no sophisticated diplomacy (thank goodness). Just unashamed concern and curiosity.

It is, at least to some extent, what many others wonder when they noticed my tremor. It is often the more observant that types I notice watching my hands and their face gets that "Hmmm...wonder why his hand is shaking?" This was the first time someone had asked me so naively about my PD symptoms. A very few others have asked me straight out if I had Parkinson's, but usually it has been someone who knew about the disease and spotted the telltale signs.

It is one thing to answer two adoring and adorable little girls, but what about adults? Seems to me that the response is the same. Can we who have this sooner-or-later obvious disease remain unashamed and direct in our response? As I have said before, it seems that the more comfortable we are with our disability the more comfortable others will be with it. Nothing like kids to teach how to explain what we would rather not have to.

Whether a child or adult, how to discuss your diagnosis is always topical.

The View from the 25th Floor Ledge

Staring out the window of the 25th floor boardroom, I swallowed hard...and jumped.

Whether to disclose one's disabling disease can be a daunting decision. The meeting that I had arranged with Patrick at his office began easily enough with the typical 'catching up' and pleasantries, having known each other for more than 30 years. When our conversation turned to Eric, a colleague we both knew, Patrick said, "Too bad about his diagnosis of Parkinson's disease.". With that cue I decided to jump in and found myself announcing, rather casually, and more than a little awkwardly, that I shared the same diagnosis. As questions and details followed it felt like I had just launched myself through the window and was plummeting toward West Hastings Street at terminal velocity. An irrevocable step had just been taken and its consequences were entirely out of my control. I was free falling. Second thoughts began immediately.

"Why had I made the unplanned disclosure?" I began wondering repeatedly to myself. There had been no apparent need to say anything. The look that hung in Patrick's eyes for a few seconds left me doubting the wisdom of the thoughtless leap. Would I be branded forever in his mind. And what about others he told? I could hear it now, "Bob has Parkinson's.” Was I labeled for life? Would my professional ability, reputation and 30 years of building a practice now live in the shadow of that disease title. Was this committing professional suicide as surely as a leap from the nearby ledge?

Tumbling through my mind were a handful of reasons for the unsolicited confession, most not particularly convincing.

First, I don't believe I was seeking pity. That was not and never has been part of my make-up. Second, sometimes, when the symptoms are especially noticeable (brought on by heightened levels of anxiety because of court appearances or other stressors), I anticipate the quizzical looks and head off the mystery and embarrassment by informing those assembled that I have PD. It just seems easier that way. It explains the tremors rather than have them misinterpreted. But that was not the case in that office tower boardroom.

So what was it? After more soul-searching I believe there is only one answer: I wanted to be understood. Seems to me that we all want to be understood. Don't we? This is despite the fact that the words, "I understand" rarely seem to ring true in the ears of those who hear them. After all, who can really understand a disease with which they have no experience? Despite knowing this we are ready or even craving to share our vulnerability. This has proven an enigmatic but powerful motivation in my life (and, I expect, others). I think that we all know in our gut we cannot experience real relationship with others unless we are vulnerable to some extent.

For those of us trying to live positively with PD, there is always the potential for us to hide. First we camouflage our symptoms. And when we can no longer keep the embarrassing tremors, stiffness and other socially awkward signs under control we are tempted to retreat entirely. The potential for rejection seems to rise to an acute level as this debilitating disease progresses.

So to avoid the isolating effects of PD I believe we must be prepared to jump, to believe that others will a least try to understand and care. There will be some who step away out of fear, but if we hope to be accepted for who we are, PD and all, we must believe in our own acceptability to take the chance.

So I say jump. The risk will be worth it.