Monday, September 7, 2009


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.

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