"Finding Hope in the Midst of Despair: My Decade With Parkinson’s Disease and Lewy Body Dementia" by Thomas B. Graboys, MD | Lewy Body Dementia Association LBDA

"Finding Hope in the Midst of Despair: My Decade With Parkinson’s Disease and Lewy Body Dementia" by Thomas B. Graboys, MD

Harvard Medical School, Chestnut Hill, Massachusetts, USA © 2012 Movement Disorder Society

Serious, chronic illness is not merely an assault on the body; it challenges the patient’s sense of autonomy and self-worth. With the loss of control that comes with serious illness, anger and denial are always a part of the complex emotional response. Severe, chronic illness erodes a person’s very sense of self as the patient is robbed of the physical and mental capabilities that define them; activities of daily living become monumental chores, and the patient’s world, both physical and intellectual, shrink. I know this as a cardiologist, and I know this as a patient suffering from Parkinson’s disease (PD) and an advancing case of Lewy body dementia (LBD).

Now in the tenth year of a battle that will continue for as long as I live, I have watched as huge swaths of my abilities have calved like chunks of ice falling from a glacier into the sea. My circle of friends has shrunk, the role I used to play in family life has diminished dramatically, and my medical career is over. The physical word I am capable of navigating has become a fraction of what it once was. My mental processes have slowed to a veritable crawl. My ability to express myself is profoundly compromised (I owe the fluidity of these words to the writer who helped me chronicle my experience in the 2007 book, Life in the Balance: A Physicians Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia). Control over my body is a formidable, ongoing struggle of mind over matter. As the disease progresses, my sense of myself erodes in parallel and I mourn those bits and pieces as I would the loss of a loved one.

As I think about how my life has changed over the years since PD and LBD became part of my life, the losses — those shards of identity and self-wash away with each new wave of illness—seem to fall into four categories. First, having once defined myself as an athlete — a skier, tennis player, and runner — I am now a stooped man with a tentative gait who struggles to get out of an arm chair, a man with tremors and muscle rigidity who could no more tie his own shoes than click into a ski binding, let alone glide unassisted down a bunny slope. So, I mourn the physical self I once knew and took for granted.

Second, as someone unable to leave the confines of my home unaided, I have lost the sense of autonomy that is so essential to well-being. I am still ambulatory, but need a full-time, live-in aide to help me with myriad activities of daily living and to help prevent the increasingly frequent falls. These physical limitations are like one of those rooms so familiar to us from spy movies: Someone is trapped in a room in which the walls slowly move together. As they do, the prisoner’s sense of dread and panic steadily accelerate. My progressive symptoms are like those walls in that room, inexorably squeezing more autonomy from my life and therefore my ability to be part of the larger world.

Third, how we see ourselves incorporates our awareness of how others see us, as well as the role we play in our families and larger social circles. With each passing year of this degenerative illness, I have watched a wide circle of friends dwindle. I call it "leprosy syndrome."

For many reasons, friends have moved on. My telephone rings less. For some, I suspect, I am too strong a reminder of a risk we all try not to confront: that we are susceptible to life-altering, life-threatening illness, and that being healthy today is no guarantee of being healthy tomorrow.

For others, perhaps, the basis of the friendship — the activities that brought us together — are no longer possible: tennis and running partners, for example. Those friends who have stayed must accept that I lose my train of thought quite frequently. And, of course, because I can no longer practice medicine, my rich and varied interactions with thousands of patients and colleagues have been erased. Being a clinical physician was an integral part of my identity and sense of self, and that, now, is gone.

As a husband, father, and grandfather (my wife Vicki and I have five children between us and, by year’s end, will have 11 grandchildren), I would have expected, at the relatively young age of 65, to be an active presence, a patriarch, organizing family ski trips, playing the host at a chaotic and crowded Thanksgiving, and dispensing medical advice. But, I grieve the inability to teach my 8-year-old grandson how to serve a tennis ball or navigate a mogul. I cannot respond to the questions and entreaties of grandchildren who suspect something is wrong with Pops, but who are too young to understand what. All of this, too, is a theft of an integral part of self.

Finally, there is the theft of intellectual capacity that severely undermines the sense of self. I was once a quick-witted doctor capable of processing complex information quickly. Today, I struggle to complete a single coherent sentence. The simplest of intellectual tasks — balancing a checkbook, setting a table properly, or keeping track of the score in a baseball game — now elude me.

Taken together, these four "losses" — control of body, a diminished physical world in which to roam, professional and social isolation combined with a compromised role in family, and intellectual impairment — represent a nearly complete dismantling of the self I once knew.

However, there is one aspect of the self that even my disease cannot touch and that is the soul. Though not religious in a traditional sense, I remain spiritually whole, comfortable in the knowledge that my life still matters both to the patients I treated, the family I have raised, and the family I have, by second marriage, adopted. And that is where hope lives; not a naïve hope that I will, by some miracle, have my former self restored, but hope that tomorrow, and the day after, can still be days from which a measure of joy and meaning can be derived. And from hope springs optimism that, even with great limitations, there is life to be lived.

*Correspondence to: Dr. Thomas B. Graboys, Harvard Medical School,
44 Old England Road, Chestnut Hill, MA 02467, USA;
Relevant conflicts of interest/financial disclosures: Nothing to report.
Received: 8 June 2012; Accepted: 15 June 2012
Published online in Wiley Online Library (wileyonlinelibrary.com).
DOI: 10.1002/mds.25117
Movement Disorders, Vol. 000, No. 000, 0000 1

Reprinted with the permission of The Movement Disorders Society & Wiley.