Monastic Musings on Parkinson's

The meal was eaten in silence. That is, except for the reader. He was perched above us in a small balcony protruding from the wall about 8 feet above the diners. Thirty or so members of the Benedictine community sat silently on simple wooden chairs on the outside of the U-shaped table arrangement, eating and listening to an echoing essay about the Roman Catholic church in Africa. Supper was comprised of bread, salad and a rice dish, with applesauce for dessert. Not being a social gathering, it was over in about 25 minutes. The food was plain, but tasty, and certainly adequate, much like the room in which the meals were eaten. It was 25 feet high at its steeple peak, covered with wood paneling rising from colored concrete floors to windows through which beamed the unusually warm January sunrays. A vibrant, iconoclastic style mural of Christ and his disciples filled one end of the hall, evidencing a reverent and loving dedication of thousands of hours of painstaking attention to detail. I have always been honored and humbled to be eating with these men who have voluntarily surrendered many of what we would call modern life’s benefits. Father Placidus, Father Mark, Brother Luke and Father Abbot John welcome me despite the fact that I am not a Catholic. This is a community that lives St. Benedict's vow of hospitality.

This setting, Westminster Abbey in Mission, British Columbia, has become a place of refuge and peace for me for more than 25 years. I come here to a world that has no rush hour, or rush at all, to step off the treadmill for a day or 2, or more. The guest quarters provide the rudimentary comforts; a room with a bed, a small desk, chair and a lamp, and bathroom, but no more. It is here, in relative silence, beauty and solitude, that I come to think, read, write, plan and pray at least a couple times a year. I have never found a place that is better for these contemplative activities.

It took me a while, and still does each time I come here, to get used to living without the constant barrage of noise, distraction, people and obligations. I recognize that this may not be everyone's idea of a good time. But this is the place where I can unbundle the many applications that I have concurrently running on the hard drive of my life. It is a time of retreat. A time to refresh, reboot or defrag, if you will, for the onslaught of spam, viruses and phishing to which I will return.

Perhaps, most significantly for me, this brief repose gives opportunity to consider the important, instead of just the urgent, matters of living. Since being diagnosed with Parkinson's 4 years ago this month, I find I need and value these times more. Perhaps it is the fatigue or vulnerability caused by the disease. But whatever it is, these times alone at the Abbey provide a much-needed rest stop in the race I run.

I have found that, while the 2 activities may seem similar, there is a significant distinction between isolation and solitude. As people with Parkinson's it is often easier for us to isolate ourselves rather than face questioning looks and the seemingly inevitable embarrassment of social interaction. But solitude is not hiding. Rather, it is meant to prepare us for engagement with life as fully as it can be lived. But without time for contemplation, how can we determine what it means to live fully?

I wonder why we are so often afraid to be alone with ourselves in silence?

Bobblehead Sings Karaoke

The Chicago hit, “Just You and Me”, that I dedicated to my wife and sang in the karaoke bar was a little off key and one octave lower than Peter Cetera did it in 1973 (the year before we were married). But that, and the fact that my tremor was accentuated due to being stressed and having forgotten my Parkinson’s medications, didn’t cause me to be embarrassed in front of the entire Kuhn & Company team. They were supportive of and accepted me for who I was, as they have always been (which excuses more than just the bad singing and the shaking).

This scene took place at the "Northern Lights" night club aboard the Holland America ship "Zuiderdam”. It was the 9th Kuhn & Company retreat aboard a cruise ship plying the West Coast waters for a few days of relaxation, teambuilding and continued professional development. These short repositioning cruises that frequently leave from or return to Vancouver in May and September provide an ideal opportunity to express appreciation for our fellow team members, as well as a chance to focus on team issues. This has become a unique highlight of our law firm culture. With the whole team, not just partners or lawyers, and spouses/significant others, it is a hallmark of our non-hierarchical team orientation and core values. But even more importantly, spending three or four days together provides ample evidence for the accepting and caring environment I am honored to work in. And that leads to a bobblehead.

In most law firms no one would risk buying life-like bobblehead dolls as gifts for the partners. Least of all when one of them has Parkinson's, resulting in his head experiencing tremors from time to time. But that is exactly what the Kuhn & Company team did. I was proud of them. Courage and creativity thrive best in an environment where risks are encouraged and people are accepted for who they are.

Despite being the senior partner, I have felt and experienced an incredible amount of support, acceptance and caring since announcing to all members of the team the results of my diagnosis two months after I received it. By that time there were minimal signs of the disease; deteriorating handwriting and some tremor. But I felt I needed to trust my fellow team members with this personal information early on, and well before any of them could ask, "Why did you not tell us sooner?". Of course, there was some risk involved, as some may have interpreted this news as a negative forecast for the future of the firm, but it proved to be just the opposite. No one left, and everyone was fully supportive, understanding and accommodating of the various consequences of the disease.

As my handwriting deteriorated further, a stamp was obtained for my signature, which due to stiffness changes every time I try to make it. When my typing speed deteriorated and sometimes a stiff finger stuck on a key a little too long resulting in some curious, and even laughable, typographical errors (such as the time I sent an e-mail signed "Boob" instead of "Bob"), I converted to voice-recognition software. This demands that I proofread much more carefully, as I am prone to make phonetically correct but embarrassing errors if I am in too much of a hurry, which is often the case.

The lessons I have learned from being in a highly supportive work environment is that having Parkinson's disease need not be a fast-track to retirement or leaving behind the challenging professional arena that I have enjoyed for so many years. I recognize that everyone who contends with PD is not so blessed, but I would urge early disclosure to at least avoid the stress of hiding symptoms from fellow workers and risking the loss of support in the workplace. After all, even a bobblehead can sing karaoke and hear the crowd shout a warm, if somewhat overstated, "Fabulous".

82

That is how old my Dad would have been today. We still mourn the loss of him on February 13 of this year. But I continue to be inspired by him, and learn from his example.

He had Parkinson's disease. It was not what caused his death, as he had fought the PD opponent since his early seventies. It was Dementia with Lewy Bodies (DLB), a particular ugly form of dementia, that took his life. Although not commonly known, this mind-robbing disease is second only to Alzheimer's. And for some unknown reason it often haunts those already grappling with PD.

As a member of the "strong, silent type" generation, my father struggled with the idea of relying on others. Although he had only a Grade 8 education, he was intelligent, fiercely independent, frugal and very hardworking. The picture of my young father betrays some of these characteristics. During my growing up years I spent very little one-on-one time with my Dad. This was partly because we both tended to be busy. However, by far the larger part was that Dad was not particularly communicative, and least of all at a deep interpersonal level. We were both awkward when there was just the two of us. But we did spend a week together just after he began showing signs of serious PD, although neither of us had that label then. We all thought Dad's shaking was Essential Tremor, which he had experienced for some time. Ironically, I was diagnosed with this mysterious family trait one year before my verdict was changed to PD.

Quite contrary to my Dad's character, he and I took a cruise to Alaska. This was a last-minute idea that came to me in June, 2001 when a trial I had booked settled, leaving me with an unheard of two week window in my calendar.

Because he was not the warm and fuzzy type, and would rather work than sped idle time chit-chatting, I knew the idea of spending 24/7 with my Dad would test not only my conversational skills, but also my emotional intelligence quotient. But as I was approaching my 50th birthday, it dawned on me that I would not have my Dad around indefinitely, and I had better devise some means to spend time with him in the near future. Rather than run the risk of having him tell me the reasons why he would not be able to go (such as his garden, odd jobs, money or Mom being left alone), I conspired with my Mom to set a trap. We decided that I would simply book a cruise. So I phoned him and told him I had purchased the tickets and he needed to pack up and be ready in a few days. I am sure he was less than enthusiastic, and more than a little scared, but I think he was also pleased that his oldest son would choose to spend time with just him, something I knew he had not experienced with his own father.

It was not the best father/son time imaginable, but I will always cherish the memory. Not only were we roommates, and all that entails, we shared every meal together, played innumerable games of crib, went sightseeing and had a few relatively intimate talks. This also proved to be an excellent opportunity to learn some lessons I had no idea I would need to learn. I saw through his eyes how it must have felt to be watched by our 6 gracious table mates as his trembling hands sought to cut his prime rib, fork peas into his mouth, or raise a cup of coffee to his lips. All of these were embarrassing for him, and painful to watch because of how it affected him. At the time I found it odd that he would prefer staying in our cabin to play Cribbage together rather than venture out into the public to join in with shipboard activities.

But despite his age and then apparent physical challenges, he seemed ready to try things I suggested, as if knowing this opportunity would not come again. While we were in Juneau we went for a walk around the city and came upon a bicycle rental shop. On a whim, I convinced Dad that it might be fun to see the city on two wheels. He agreed, despite not having been on a bike for many years, and we set off. Things we thought seemed close on the map were a fair distance away and we ended up pedaling more than 25 miles that day. He never complained even when we had to sprint to make it back to the ship on time, although he lagged behind a little and required a nap before supper. For a time I fogot my father's age and condition. While I now know it must have been exhausting, seeing his unrelenting fighting spirit, and the extraordinary effort it must have required, gave me great pride in my Dad. He was more of a hero to me in his failing health than he had been in those early years when boys so often idolize their fathers.

Now, looking back, I find myself asking several questions that find their genesis in my Father's fight with PD. The first one I will comment on now, and the second one (what about the genetic bread crumbs I might follow) later.

How do I avoid (or deal with) being embarrassed and uncomfortable when my PD symptoms take over and threaten to Shanghai my social agenda?

I continue to process this, which can be especially difficult in large gatherings with people I don't know well. But it is my conviction that I must be, or become, comfortable with who I am, "warts and all". If I can accept myself, with all my limitations, I am more likely to be accepted comfortably by others, without me hiding or disguising my symptoms. To say it another way; I cannot expect others to feel comfortable around me if I am not comfortable with me. I might add for those who find themselves around those of us who evidence some disease or disability that the reverse is also true. The more comfortable you are with us, the more comfortable we will be with ourselves.

I am still learning to not be embarrassed about my times of uncontrollable tremors and others symptoms. And I expect that this will continue as the PD presents a moving target. But my Dad's example of pedaling many miles with such determination lives in my heart continually.