Doctor’s Book “Life in the Balance” Nails the PD Experience
Posted Jan 26 2011 9:52am
I’ve always considered myself a fairly decent writer. With the typical arrogance of a writer, I’ve always sorta felt that the failure of my books to sell is more YOUR fault for not being interested in the subject than MINE for not being a good writer. (Being self-published, I don’t have access to the network of publicity agents, etc., that comes to the author at a big publishing house where any book, no matter how crappy, gets the full publicity treatment. I go my own way, and the results are what they are.)
Then today, I stumbled upon clips from a book written by Dr. Thomas Graboys who, for years, was one of the eminent cardiologists in Boston. He was diagnosed with Parkinson’s disease with the complicating factor of Lewy Body Dementia and retired from his practice in 2006. One clip I read made me feel both a sense of community — knowing that someone else is suffering the same thing — and a sense of shame as a writer that I’ve never been able to express this experience nearly as well.
“My interactions with people are marked by a slowness of thought … that is as embarrassing as it is frustrating. It’s more than losing my train of thought, though that happens a hundred times a day or more; it’s having the words in my head, but being unable to move them from the part of the brain where thoughts are formed to the part that controls speech. The neural pathways are disorganized, like some fantastically complex highway system with overpasses and intersections, on-ramps and exit ramps, all leading nowhere. A thought forms, it gets sent down the pike, only to get lost in some cul-de-sac where it spins like a whirling dervish… Sometimes the thoughts will finally spin out of the cul-de-sac and find expression; often, however, they simply spin themselves out like a spent whirlwind, never escaping. The halcyon days when I spoke eloquently and with great confidence are gone. As I said, nothing, not even speech, is second nature any more.”
What a perfect description of trying to communicate with Parkinson’s disease. You know what you want to say (most of the time), but you just can’t get the thought from where it was born in the brain to the place where the brain can send the words to the mouth and make the mouth say the words. For me, there are times that I know the concept I want to communicate, but can’t even think of the words to use… in some cases, I can’t think of a word at all.
But Dr. Graboys really nails it — the whole experience. The loss of your identity as a sexual being, the sense that you have somehow cheated your spouse into being less a wife and more a caretaker, the loss of a social life — “nothing is second nature any more.”
Nothing is second nature to me any more. No task is too simple, no activity so routine, that I can do it without forethought. Is the glass right side up, or will I pour orange juice all over the counter again? When I leave the kitchen to walk to the bedroom, how will I get there? At the party tonight, where will the stairs be, and how will I navigate them? Will I be able to join the conversation? Or will I be standing in a corner, nearly catatonic?
For social gatherings, I have what I call my cassettes: a repertoire of conversational riffs on various subjects that will allow me to enter the conversation and, with luck, appear to be a reasonable facsimile of the old Tom Graboys. Can I pull it off? Can I act the part and mask the reality of dementia? One of my goals in social situations is to have people go away saying “You know, Tom seemed pretty good.” It allays the anxieties of friends and colleagues when you look and sound good, even if they cannot fathom the effort it took to muster such a performance.
Without my cassettes, entering a group conversation is like trying to get on the freeway traveling at twenty miles an hour while the traffic is rushing by at seventy. Slowness, an all-encompassing mental and physical slowness, has descended upon me. It is not going to lift.
* * *
Holding on. Much of my life, today and every day, is about holding on to what I’ve got—or, more precisely, holding on to what is left. There is still happiness in my life: my wife, my children and grandchildren, music, and, now that I can no longer practice medicine, the time to explore new interests such as indoor cycling and writing. There are even days when the “old Tom” emerges, usually briefly, and I feel like my old self, only to awake the next day and come face to face once again with the reality of life with a progressive neurological disease.
For now, I still see the light; but on the other side of this knife-edge ridge I walk, there is darkness, so I hold on. I have discussed this with my wife and adult daughters. There is a point beyond which I do not wish to go. That is the day I can no longer control my bowels and my bladder, a common problem for patients with advanced Parkinson’s disease. To me, this is the ultimate regression. I have been in too many hospital wards and nursing homes where patients with severe dementia are lying on the floor or sitting in their own urine and feces, oblivious to the world around them. I have seen the end of this road, and I won’t go there.
I am determined not to let Parkinson’s, which has stolen so much, steal my dignity. That is what I am really holding on to. Dignity. It’s why I exercise, practice yoga, and play the drums. It’s why I shave every day. It’s why I dress well and make sure I look my best. As a cardiologist with a predominantly geriatric patient population, I often noted in my files when a patient started looking unkempt, a look that signaled that he had surrendered, been beaten down, or no longer cared enough to pull himself together. I no longer save my best clothes for special occasions. Now, every day is a special occasion.
Buy this book . Buy it today. Whether you have Parkinson’s or know someone who does, this book will give you insights into this disease where my poor efforts have merely scratched the surface.