The loss of his ability to write is one of the many changes my father has suffered since undergoing Deep Brain Stimulation surgery for Parkinson’s disease. Six months ago, he wrote his last blog, the “faux interview.” In it, as he reflects on the experience of undergoing three DBS surgeries, you can plainly see the hopes that the surgery would relieve, even for a while, some of the more difficult symptoms of his disease.
A very short time after the final surgery, however, he was no longer physically or cognitively able to compose a blog, as his mental sharpness was gone and his hands incredibly weak. In the past two months confusion, hallucinations, and delusions have appeared with the onset of what seems to be Lewy Body Dementia (LBD) or Parkinson’s Disease Dementia (PDD). The struggle to make sense of this rapid and unexpected turn of events is a source of incredible frustration. In his own words:
There is a large amount of uncertainly with this disease. From day to day it’s variable. Symptoms can range from an ability to be fairly productive, to a life that’s severely attenuated. I am functioning at about fifty percent Ievel I suppose. What seemed to have been a fairly benign diagnosis of Parkinsons, is overshadowed by something much larger. Dementia is part of the picture but didn’t appear until much later [than the motor symptoms of Parkinsons].
Recently, [grappling with dementia] I have come up against life and death issues and those are very hard. You find you may or may not be prepared to take this much of a status change. Facing [severe health issues and] death from a much more rapid approach than you intended or ever dreamed.
There are kind of gaps in your thinking. For instance you find yourself in the horrible fate of a disc jockey – dead air time – nothing happening in your brain, or waiting for something to happen. It appears like a computer screen – fills itself suddenly and you have access to all this information, [only] it has come up in patterns and is difficult to interpret.
I would say I’ve had a really good life. Very fortunate. Sitting here on this beautiful day with sun shining and life springing anew I begin to miss the older life a lot. When I was young and stronger mentally as well as physically, I began to think this life would go on forever – but it’s not meant to be. Life has a beginning and an ending. I appreciate that, but it is a hard thing for me personally to [be at the] end.
Each of my children added a different link to life that has been very special, a highlight of my life. Each child is so unique and different they’re all really a delight. The main thing to point out in this respect is that my children are still quite young. At least I thought they were, but somehow they had grown up and become beautiful young women and a fine young man. Each answered a different calling, worked hard, and I was extremely proud of them. None of them followed exactly my course, nor would I have wished them to.
Claire became a nurse, and later a photographer. Jacelyn became an executive. Jay became an independent contractor for a locally based dive services company. I was truly amazed and inspired by their personal work and stories. It was truly a delight to see Jay catch fire and build a career he really believed in and enjoyed. Something that fit his independent character very well. Jacelyn’s path was slightly more structured - a different call, but no less innovative and inspirational. Claire was my very unique soul. She took after the one piece that I truly delighted in, which I couldn’t excel in because of my vision, and color blindness, even though I loved photography for much of my life.
What do I say about a wife like Carolyn. She was truly perfect for me. I don’t really know if I think marriages are made in heaven, but if any possibly could be this one certainly was. The earliest years with her seemed to be perfect and of course it cannot be perfect because nothing is. Still later in life, a fantastic finish, as we approached life from the standpoint of working together [through the challenges of this disease].
I have loved animals from my early life. My lab Bella is a silly, selfish, yet very loving animal [who] provides what remaining days I have a great deal. Often when it’s the middle of the night, [and something is] threatening my sense of well-being it’s amazing because just the reflection on her face is enough to soothe my soul. Whatever that is, whatever that basic understanding is, it isn’t much but it’s enough. Total acceptance. Total care. I don’t think the value of that can be underestimated.
I feel I should say great orations about religion and other [existential] issues; that somehow I’ve found the truth. But I don’t think I really have. Perhaps Paul Simon said it best – it's all gonna fade. You feel like you should have volumes [to share] from a life that has been so completely lived, but it all seems to come up as puzzles [for me now]. With this disease, things become increasingly shattered and broken pieces remain. Even as I finish these written words, they become tangled [in my mind].
-John and guest blogger/daughter Jacelyn
