Customer Reviews

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia

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Only fifteen years ago, in 1993, Dr. Tom Graboys was on top of the world. He was one of the most respected physicians in the rarified atmosphere of Boston cardiology and a member of the "dream team", convened to look into the controversial case of Reggie Lewis, the Boston Celtics star. Tom was a stalwart leader in the Lown Cardiovascular Group, named for Bernard Lown, a co-founder of the International Physicians for the Prevention of Nuclear War, which was the recipient of the Nobel Prize for Peace in 1985. Especially in the years leading up to the Nobel, Tom was active in IPPNW and in its US affiliate, Physicians for Social Responsibility.

But Tom was more and had much more than that.

He had a wonderful, accomplished and universally admired wife, Caroline. He had a brilliant mind and an athletic body. And he had a legion of patients who virtually worshiped him, as much for his humanity as for his skills as a Harvard cardiologist.

Tom was known to the rest of us in Boston cardiology as a premier practitioner of non-invasive cardiology in its truest sense. He spoke and published widely on the over-use of expensive and often unnecessary invasive technologies. Even more importantly, he argued tirelessly in favor of seeing, listening to, and treating as a fellow human being the whole patient. Countless times on ward rounds, I have told residents and fellows that my friend Tom Graboys across town would have encouraged us, with evidence to support his view, "not to rush to angioplasty or coronary bypass surgery on this patient".

But even I did not know everything that Peter Zheutlin and Tom himself have disclosed in this magnificent and beautifully written book. I did not know that Tom, after examining his patients, would sit with them on a couch, almost knee to knee, never with a desk interposed. I did not know that he gave each patient his home phone number. And I did not know that he always wrote out longhand some encouraging suggestions after his patient visits, never giving the patient a pre-printed sheet of instructions.

In essence, Tom was in many ways the best of us at holistic cardiology care.

Aided selflessly by the considerable writing skills of Peter Zheutlin, Tom recounts in this deeply personal book what he has lost in the last ten years: his cherished wife Caroline to colon cancer in 1998; his career to severe Parkinson's with Lewy body dementia in 2005; and perhaps forever, his graceful athleticism and the confidence it conveyed. Tom does not pull any punches. The Parkinson's and Lewy body dementia have ravaged his body, his mind, and sometimes his spirit.

What he has retained and gained is equally important, though. While he clearly still grieves over the loss of Caroline, he is re-married to an extraordinary woman, Vicki. One surmises from this book that Vicki is essential to his physical and psychological stability, and a woman who loves and supports him despite now being married to a very different Tom than she had expected. He also has the love and strength of his adult daughters, Penelope and Sarah, their spouses, Vicki's children, and his grandchildren. And he has great friends and former patients from of old.

In the last several pages of this book, Peter Zheutlin has Tom reflect on what advice Tom the skilled and compassionate physician would give to Tom the patient with a devastating illness, or to any patient facing what he has faced. The wisdom and poignancy of those pages, but also the entire book, convinced me to put this unique and unflinching story into the hands of every cardiology fellow at my own medical center. Despite having been a cardiologist for more than 35 years, I have learned from Tom's unforgettably honest story how to live and practice better.

Tom freely admits throughout the book that in retrospect he has not handled every aspect of his devastating illness as well as he might have wished. But in my view, he has been as graceful a patient as he ever was a physician. Both as patient and as physician, he has also not lost his capacity to heal.

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Dr. Graboys pulls no punches in being real about what his life has become living with a debilitating disease. He writes not only about how this has affected him, but also the effect on his family, friends and the people that are part of his daily life. Anyone who has a loved one, be it family or friend, with a chronic disease should own and read a copy of this book - you will want to read it again. It will give you insight into the emotions and frustrations of living with a disease that currently has no cure. If this book does not touch your soul in some way, you might want to make sure you have a pulse. There is no "happy ending", but there is hope and love.

For a person to clearly articulate what is going through their mind as they grapple with a debilitating mental dementia (and physical) condition is remarakable. This is what Dr. Tom Graboys does in this book with great clarity. I know that my family who is grappling with a very similar issue with one our parents found the book extremely helpful- and for that Dr. Graboys deserves our real gratitude. He is continuing to provide valuable medical help to patients and their families in a new way- through this book rather than the exam room.

This book is so well written that I think people who don't have dementia related illness among their family or friends would still find the book compelling reading. Dr Graboys chance encounter with the Chief of Neurology in the parking lot is stunning.

Being a Parkinsonian myself, but without the added Lewy body dementia, I can appreciate Dr. Graboy's attempt to find a graceful way to live with his wife and children, without being too dependent on them except as his disease forces him to be. I admire his courage at telling the story, and doing it before his disease takes away that ability from him too. The book is very well written and with great honesty. I hope I can be like him when I become dependent on my wife and children in a way that really begins to affect their lives. Already, I've been the beneficiary of caring attention from both them and my friends. For my part, I am trying to remain in control as long as possible - I jog 5K every fourth day, weather permitting, and dance at all the parties where there is dancing and music (doing it well enough for people to comment). My greatest handicap is my deteriorating voice, the one thing that led me to retire from my job at the New York VA and my job as a teacher of cardiovascular pathology at NYU School of Medicine. I am just going to start voice therapy lessons. Let's hope they help me regain my voice quality, the one thing that bothers me the most. I have tried to maintain my voice so far by singing at parties - Indians do a lot of this. To my surprise, I have discovered that singing is easier to do than ordinary voice conversation. As for Dr. Graboy's book, I have only praise for it, and I wish him the best in the difficult days ahead. My advice to him: continue to be as brave and as caring as you have been so far. Your loved ones will take care of the rest.

One of Boston's leading cardiologists shares the gut-wrenching experiences of his life as a relatively young patient with the devastating, ravaging losses of severe Parkinson's Disease and dementia. His description of his struggle in the face of ongoing adversity is a remarkable handbook for all of us who may one day be patients ourselves. He writes with openness and insight of how he copes with his degenerative illness and also family relations. Dr. Graboys' grace and courage call to mind John Gunther's book about his son, Death Be Not Proud.

This story parallels my own experience with Parkinson's Disease in several ways. My journey with PD began about the same time as the author's. In addition, we are the same age. I appreciated his candor and honesty in expressing his thoughts and feelings about the disease. I intend to use several portions he wrote to communicate my feelings to my own family. Often it is difficult to express myself in ways that they can understand. I feel fortunate not to have Lewy Body Disease as well as PD. His life is much more challenging than mine because of that factor.I am also thankful that my faith in God assures me of my final destination in heaven where there will be no more disease or pain. Darlene Palermo

my husband has parkinsons with dementia and i have been reading it to him. he has related to most of the things the Dr. has told of his experienced. i feel it has made him feel better about himself. i must say i feel the same because i am his caretaker and i see this everyday. anyone with parkinsons or anyone that has someone with parkinsons should pick up this book and read it. sincerly. L. Holt

Walking a fine line here -- Dr. Graboys has been hit by a monstrous piece of bad luck and is fighting it bravely. That said, and rightfully so, I don't think this is a very good book. Far too much of it is devoted to telling the reader over and over again what a wonderful doctor, wonderful guy, and beautiful -- in the physical sense -- guy Dr. Graboys was before struck by Parkinson's and by dementia. He does it, his co-writer does it, his family does it. For me it wore a little thin. So he was part of the dream team for Reggie Lewis? That's impressive, but tell me once, not half a dozen times.

And is no one else terrified by the fact that Dr. Graboys, though suffering from dementia and having had two car accidents in a month, was -- at least at the time this book went to print -- still driving? In my view, though it certainly enables him to maintain shreds of his former life, that's a colossal act of irresponsibility, his own and that of his doctors. Also, and to his credit Dr. Graboys recognizes this point a couple times in the book, with his resources and his ability to buy the best care and support he can, Dr. Graboys is much better off in fighting his disease than the huge majority of those struck by the same fate.

The last two chapters are the best of the book as Dr. Graboys shifts from lamenting his bad luck and lost past to offering a number of thoughtful ideas on coping with chronic disease. More of that and more analysis of the progression of his own symptoms would have made this a better book for me.

The author is a top cardiologist, famed in the medical field. Suddenly he finds himself displaying symptoms of an unknown disease. Like many of us, his first step is denial. When he starts exhibiting a worsening of his symptoms, he can no longer ignore the disease. For those not in the profession, this is an eye-opener. Somehow, we feel that doctors are super-humans. This story shows us the opposite. Parkinson's is progressive and unrelenting; knowing how it will end us heartbreaking. Having this man write about it reveals the depths of his personality and soul. I recommend this book to all; none of us is immune to death!

My husband has both Lewy Body dementia and Parkinsons. It was so helpful to me, and to my husband to learn more about these diseases from someone who has them also. First hand information and experiences are far above all the doctors input and other books. Thanks to Dr.Graboys for taking the time to help others while in the midst of his own debilitation.
We are truly grateful.
Dolores Schroeder