School, Graboys was also president emeritus of the Lown Cardiovascular Research Foundation in Brookline and senior physician at the Brigham and Women's Hospital until 2006, when Parkinson's and dementia changed his life and forced his early retirement.
Life in the Balance [co-authored with Peter Zheutlin] is Graboys' brutally honest account of his new life. I contacted him as soon as I finished reading it. (I usually segue from appreciation into an invitation for an interview.) This time, Graboys himself offered to do an interview and, with some trepidation, I agreed.
Our extended conversation took place last May. Why the delay in posting? Over the last several years, I have gradually mastered the skills for conducting an interview via email. Recorded interviews, however, are something else entirely. My usual MO is to fade into the background and let my interviewee shine. But my wooden delivery made me a distraction. And there were special challenges working with someone with two serious medical conditions, which affected not only the volume and the quality of our exchange. These days, it's a full-time job for Tom to just hang onto his thoughts until they're verbalized.
Here, Graboys describes his thought process [Life in the Balance, p.11] :
"My interactions with people are marked by a slowness of thought (called bradykinesia) 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, i 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."
So, for a variety of reasons, I let the podcast go. This is the next best thing. Please read Life in the Balance, the extraordinary inside story of living with Parkinson's and dementia.
My guest today is Dr. Thomas Graboys, author of Life in the Balance, A Physician's Memoir of Life, Love and Loss with Parkinson's Disease and Dementia. Welcome to OpEdNews, Tom. You're a very private person. Yet you decided to open your life to the public by writing this book. Why did you do that? And what was the cause for the urgency that you felt?
Having lost my wife [Caroline] to cancer, I went through a period of extreme depression. And, at about the same time, there was also a sense working [on] me that wasn't simply depression but a more profound issue affecting myself and my children and my colleagues.
Your book is an unflinching look at Parkinson's, dementia, and the effect they've had on you. No one had written a book like this before. Did you ever worry that you might be giving too much information?
A lot of information; I acknowledge that. But science writers I'd been in contact with, and other writers, urged me to forge ahead with the objective. The concern that I had, that's reflected in the urgency, was because of trying to adjust or predict whether there was ongoing progression of the disease.
Writing the book was an undeniably challenging but it was also therapeutic for you. Can you talk about that?
Very therapeutic... My concern would be that yes, there was a lot of material for me to have to digest...
Your book struck a chord with many readers and your public appearances have often seemed more like support groups. Why do you think that is?
All of us have a story to tell. That's one of the realities that I now understand...We knew that the book was going to be [greeted] with a lot of enthusiasm. And part of it is that it's not simply an individual having Parkinson's. But it's an individual whose life has changed in many different ways. And that is reflected in a large number of emerging support groups. It's a situation [in which] we all need some kind of support. The question really is how to obtain it. The major way that my message came across is that there are support groups at the grassroots extending on to physicians' groups and lay individuals... Each day, from my perspective, brings new challenges. We can either deal with these in a concentrated fashion or suppress them, which would be less [desirable]...
Let me give you a few "bullet points" about the whole process, okay?
A major issue that I faced early on was denial. I was uneasy and frustrated about how the book would be accepted. That became an element of denial during periods of time when it was clear that we needed some optimism.
You can't go this road without both a sense of humor and some optimism. And concurrently, we need to deal with the reality of survival [for] a caregiver and the importance of the family unit. I think we've underestimated how important the family unit is. There has to be adequate time not only for the caregiver but the caregiver's family. Having physician/patient, physician/family interaction is extremely important...And finding if there is an individual out there who can function as my advocate. I use the mantra "stay vertical." That's what I communicate and I think each day to a variety of people. You have to keep yourself in the game. You've got to deal with burnout, which affects all of us in this situation.
Denial, as I just mentioned, is a major defense mechanism. Social isolation is a common emerging problem with patients who have this disease. We need to get our loved ones out of bed in the morning and empower them to have productive elements [to] their day. So, each day brings a challenge but we give our patients and our patients' families the empowerment and do what we can to minimize social isolation.
It's important to emphasize to patients and families that while these diseases are not curable at this time, they are fully manageable. Medications necessary to control the symptoms are now readily available. But medications are only a part of an organized program including diet, exercise, and psychological support. I think we need to view chronic debilitating diseases as a long journey, with every right to be optimistic. I believe that hope is crucial to outcome and that the loss of hope summons despair. To deal with the daily struggles, we need optimism and a large allocation of humor. Perhaps [most necessary] in dealing with chronic disease is a human physician who is capable of listening to my story in an empathetic and unhurried manner. The key here, I think as we all realize, is unhurried. And to learn - to practice - being a listener.
Intermixed with the whole process is fear. And fear can become an invasive process that affects all of us, especially those with chronic health issues. Being a partisan patient means the reality of acceptance of increased dependence on others. The transition from physician to patient has been humbling. The need for long-term care is a particularly difficult pill to swallow. Regrettably, dealing with this disease is a full-time, 24-hour affair. It strips us of our former identity and replaces it with something distinct, somehow foreign that requires the understanding that we are in a continuous process of losing control. Sometimes, [it's] like a large chunk of ice separating from an iceberg, floating away, it is an inevitable reality.
So, the fact that I can't pursue some of my athletic dreams [running, tennis, skiing], I can find a suitable substitution. People want to help me and I have to accept their small periods of support and not be embarrassed by it. If we're there to ask for help, my experience is that the folks out there in the street are there to help and make my journey through this process a gentle one, one that is empowered and supported.
You just covered a lot of territory.
Beyond the burdens of Parkinson's disease, you also suffer from Lewy body dementia. [In the book], you describe this condition, which has had a drastic effect on your thinking process. For those who have not yet read Life in the Balance, could you please explain how Lewy affects your thinking and the ability to express yourself?
Okay. The whole area of dementia is complicated and fearful. The day-to-day realities I have a couple of options. One is, I can sit back and whine and kind of have the "woe is me" situation. Or, I deal with the reality as it's affecting me. I don't know how much of my IQ has been affected by this process...The fact is that if you're sitting at home watching television and you're horizontal and not vertical, that's a bad situation. And we need to do everything we can to keep us in the game.
My experience is that [with] family members, when given an objective job, in the care and caring, it can be found to be a positive situation, instead of completely negative. Yes, it's very frustrating to be in situations where you can no longer contribute, in the traditional sense. I can contribute in a non-traditional sense by activities on a daily basis, and connecting with other people. I've interviewed a number of physicians who have these diseases and it's incredible how much information can be conveyed by individuals, by physicians, and by caretakers.
While some simple tasks have become much more difficult or impossible, you're far from throwing in the towel. In fact, you say repeatedly that you enjoy life. What do you to stay in the game and keep depression at bay?
Make sure that each day you get up at the same time. If you're used to getting up at six in the morning, it's important that that be a kind of benchmark for activities. I exercise each day, seven days a week, and I make sure and Vicki, my spouse, makes sure that I have a full plate every day of activities that are challenging. It sounds complicated or difficult; it really isn't, once you get in the mainstream and you see what activities are available. I'm heartened to see that there are materials to keep people physically stimulated and that's part of the emerging managing approach for people with this disease. I think occasionally it's probably good to have an unhappy day. You may then turn a mediocre or unhappy situation into a positive one. And it gets back into patient advocacy. You need to have an advocate in the complicated medical milieu that we're dealing with. But it's doable.
I'm not going to sit back and bemoan my plight. Am I angry about having this disease? Yes... Has it opened some doors and closed others? Yes.
Don't waste your energy on anger. It's not a productive way to use your time and your effort... People ask me, what will my outcome be? I say that I can't predict the future; I can't do anything about the past. But I can structure what goes on, on a day-to-day basis...When I'm empowered, I have hope. When I have hope, I can have dreams.
You're blessed to have an incredibly supportive family. You invited your daughters, Vicki's kids and their spouses to talk about how these diseases have affected you and your life. Were there any surprises in what they said?
There really were no major surprises in terms of how they dealt with or are dealing with it. After the initial diagnosis, and sitting down with each of the offspring.
It's clear that they are sensitive to its reality. They're incredibly supportive... We have strong contacts on a day-to-day basis with all the offspring and I think that kind of support is also helpful.
So, this is a disease where people may feel increasingly isolated and overwhelmed and it's particularly true in the offspring.
Communication continues to be a major issue, not only with our offspring but [with] colleagues and neighbors and folks. We have to realize that, yes, it's frightening but controllable.
That leads to my next question: there are 1.5 million Americans with Parkinson's and over 600,000 under 65 with some form of dementia. Those are big numbers. As you pointed out, individuals and families feel increasingly isolated and overwhelmed which actually is an already bad situation. Do you have any advice for those families?
I have used the word "empowerment" throughout much of this discussion this morning. And the ability to convey a balance of hope and optimism with daily support underscores the fact that you don't have to undergo this alone. People want to help you through it. You have to be somewhat pro-active, though. There are definite benefits from being pro-active and integrated into the kinds of programs and daily one-to-one activities.
You don't need to be a Rhodes scholar to take care of patients with dementia... Acknowledging that this is a long course in which there are pieces that are very positive that I would not have experienced if I didn't have the disease. That's a positive from a negative... And yes, it's frustrating for me, for us to have this conversation; I tell you that it's a struggle.
You were happily married to Caroline for many years before she died in 1998 of colon cancer. You began exhibiting the symptoms of what turned out to be Parkinson's and dementia and, within a relatively short time, you embarked on your second marriage, to Vicki who has never really known the Old Tom. Do you feel that you and your family got a raw deal?
Well, I'm not sure who to blame it on! Yes, I do feel some days that we got a raw deal. And yes, Vicki, several months into our marriage, awoke one morning and said, "There's something wrong here. What's wrong with this picture?" And it's taken a lot of psychological support and work to deal with [this]. It requires as any chronic disease patience and commitment and support I keep repeating the same theme.
Until your retirement, being a doctor very much defined you. The single most outstanding and defining characteristic was your ability to listen closely and carefully. Since you wrote this book, you have become the recipient of hundreds of emails, letters, and phone calls from people who want to share their own stories. In some ways, you have redirected your skillful listening to this whole new group of people. How does that feel for
It feels great! People frequently come up and say to me, "I really enjoyed reading your book. When are you going to write another one?" And I say, "Let's deal with this for the time being." What's amazing to me, I just came back from a conference in Utah - 300 physicians and they want the answers. So, I can give them some answers on how to deal with this.
But basically it's having support and staying vertical. We had more responses than I could ever think. And I've gone through all of them and we're now trying to develop a group of several hundred for which we can define what is special about this group of people.
What can they teach us, as physicians? And while I'm not playing with a stethoscope on my chest, I can hear and listen to people and that is, of itself, extremely supportive.
And people say, "Keep working at it. Keep working at it." I'm still functioning as a doc in some ways, and, in some ways, more in depth than I had when I was practicing clinical cardiology.
I appreciate the opportunity to touch base with you on this.
I learned so much from reading your book. It's been a pleasure and an honor to speak with you, Tom. Good luck to you.
Thanks again, Tom, for your enthusiasm, commitment, courage and generosity of spirit in offering to do this interview and battling your way through it. Also, for your considerable patience, both during the interview and awaiting the end result.
Dr. Graboys' website