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Thomas B. Graboys, 63, is the author of "Life in the Balance: A Physician's Memoir of Life, Love and Loss with Parkinson's Disease," written with Peter Zheutlin. By Lauren Daley Standard-Times staff writer May 16, 2008 6:00 AM Fall River native Thomas B. Graboys, 63, was a top Boston cardiologist when he began to experience symptoms of Parkinson's disease seven years ago. At first it was little things - simple math problems became increasingly difficult for the Harvard medical professor. Today, the onetime athlete has trouble walking. It's hard to eat with a fork. He gave up sports. Sometimes his illness causes such confusion that he can't remember how to find his way back to his bedroom from the kitchen. He suffers involuntary tremors, sweats and jerking movements of his arms and legs. He has nightmares so terrifying he once fell out of bed and broke his teeth. To make matters worse, his first wife died of cancer just before the onset of this unrelenting disease. The doctor is now the patient. But despite it all, he says, he remains an optimist, and still has his sense of humor. In a book published last month, "Life in the Balance: A Physician's Memoir of Life, Love and Loss with Parkinson's Disease," Dr. Graboys describes his battle with Parkinson's and Lewy body disease. Parkinson's disease is a movement disorder that is chronic and progressive, meaning that symptoms continue and worsen over time. As many as 1 million Americans suffer from it. Lewy body disease is a cause of dementia very similar to Alzheimer's. There is currently no cure for either. Because the combination makes it hard to think clearly, never mind write, Dr. Graboys wrote the book with the help of with freelance journalist Peter Zheutlin. But 15 years ago, Dr. Graboys was at the top of his game. The senior physician at Brigham and Women's Hospital and clinical professor at Harvard Medical was recruited by the Celtics to treat the heart problems of star Reggie Lewis, who ultimately died in 1993. His achievements, memberships and awards are numerous, including being among the team of doctors who won the Nobel Peace Prize in 1985 for their work with the International Physicians for the Prevention of Nuclear War. The Standard-Times recently spoke with Dr. Graboys on the phone from his Boston home. S-T: How has your view of medicine changed now that you've become the patient? Dr. Graboys: It's very complicated, being a patient. After all these years ... (pauses) Bear with me, I have these lapses. If you wait, it comes back. That's part of the frustration. It's very frustrating. I've lost my ability to be articulate. In years past, I'd pride myself on my ability to speak, but I've lost that. (And I have) other cognitive problems - mathematics, conceptualizations, trying to maintain a thought process. I'm out of control. When you go down my road and you find you're losing control... (pause) The first title of the book was "Losing Control" but that was rejected by folks in New York as too much of a downer. But the point is, losing control, we have to deal with it. I still have a sense of humor; I try to minimize my whining. I'm blessed with support from Vicki, who is holding down two full-time jobs - one is her company, one is me. She's above and beyond. S-T: Vicki is your second wife. How did you meet? Dr. Graboys: One of my daughters introduced me to her at a Christmas party a number of years ago. My daughter Sarah said, "I met a woman you should call for dinner." The rest, as they say, is history. It's actually coming up on the 10th anniversary of (his first wife) Caroline's (death from cancer in 1998.) She was a real people's person; she ran the Fuller Museum in Brockton. She was very popular in Brockton. She could've run for mayor. S-T: You grew up in Fall River? Dr. Graboys: Yes, where the old Truesdale Hospital is. I went to Tabor (Academy) in Marion. Vicki and I are on the Board of Trustees at Tabor. I graduated from Friends Academy in Dartmouth, Class of '58. ... Actually, I started out working at Truesdale at age 16 - that would never be allowed now; those were days before malpractice. I drew blood, did IVs, did chemical tests ... Then I went to Cornell, then to medical school in New York, was an intern at Boston City Hospital, went into the Air Force, then came back and finished my training in cardiology. The last 30 years, before the disease, I was reasonably well-known. I'm still a professor of medicine at Harvard, but I no longer see patients. The strength of my teaching is to coach the second-year students about caring, taking care of patients, trying to have it be focused on patient care rather than technology; how do you speak to patients, how do you convey issues of optimism and hope, not to create anxiety, to take care of people. The S-T: Are you able to concentrate in the classroom? Dr. Graboys: It's exhausting. I can wake up in the morning and get going, but after a few hours, I fatigue badly. The disease is non-relenting. I can't get a day off. Even when I sleep, I get these terrible nightmares. It's enough to catapult you out of bed it's so horrendous. I had one situation where I thought there was a tunnel ahead, and I threw myself onto the floor and broke my teeth. My problem is not curable but it can be managed. (Long pause.) It's manageable. You take pills every four to six hours. If you miss, the symptoms come back. It's easy to feel out of control. I have to take 10 pills a day; I don't know what the long-term effect of the pills is going to be. S-T: When did you suspect you had a problem? Dr. Graboys: In retrospect, I look back at items like having trouble in the lab, not being able to do simple math. On the other hand, I can still exercise vigorously. I'm addicted to spinning. Plus I do yoga. Psychologically, it's important because I was once a scholastic athlete. I can't ski now. I can't play tennis. S-T: When did the disease really start, though? Dr. Graboys: Probably seven years ago, just cognitive dysfunction, skipping phrases, difficulty in day-to-day. I desperately denied there was anything going on. But after a while, colleagues, nurses, all noticed I was not myself. I was chronically fatigued. It slowly progressed over a year. There were times I couldn't dictate. In cardiology, there's no room for error. I got to a point where I had to step back. I had to retire. But I'm still a doctor. S-T: When were you officially diagnosed? Dr. Graboys: It's difficult to give the exact date. Diagnosing Parkinson's takes five, six, seven years before you know what's going on. That was the time frame with me. S-T Is Parkinson's genetic? Dr. Graboys: About a third of cases are genetic, a third is unknown, a third is exposure to toxins. In my case, it may well be genetic; both my parents had forms of dementia. S-T: What are your thoughts on stem cell research in finding a cure for Parkinson's? Dr. Graboys: I don't know enough about stem cell research. I think it may offer a treatment, but that may not be in my lifetime. I'm optimistic that if they can't cure it, they can make things tolerable and stable. In the face of uncertainty, there's nothing wrong with hope. It's a lousy diagnosis. This is not a lot of fun. This is unhappy. Every day I have to depend on someone else for very simple things. S-T: Like what? Dr. Graboys: Getting dressed; lapses where I'm not sure where I am. The list could go on. Pouring juice. Eating. I am really slow. And having grown up being really fast, it's extremely frustrating. S-T: You say in the book you had an urgency to write it now. Dr. Graboys: I had urgency in that I can't predict the rate of change. It's a slow progression, but I can't say that in six months I'll be at this level of articulate that you and I are talking now. S-T: You are a big believer in hope, though. Dr. Graboys: I'm basically an optimist. I feel I have enough strength to deal, even when the deck seems stacked against me. I refuse to let despair into my realm. I have five grandsons who are my pride and joy. I don't want people feeling sorry for me. "Life in the Balance" (Sterling, 224 pages) is available at most book stores for $19.95. Contact Lauren Daley at [log in to unmask] Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn