Talking With Thomas Graboys: A Physician's Battle With Parkinson's and Dementia

Thomas Graboys, author of "Life in the Balance: A Physician's Memoir of Life, Love, and Loss With Parkinson's Disease and Dementia", offers a compelling perspective as both doctor and patient.

Everyone with Parkinson's disease has a unique story, Thomas Graboys writes in Life in the Balance: A Physician's Memoir of Life, Love, and Loss With Parkinson's Disease and Dementia. "Each of us brings to illness all of our life experience and the same complex emotional makeup we bring to every other aspect of our lives."

By any standard, Graboys' story of his own Parkinson's and Lewy body dementia is high drama.

Graboys was a prominent cardiologist on the faculty of Harvard Medical School, a member of the media-dubbed "Cardiology Dream Team" in Boston, and director of Lown Cardiovascular Group, founded by his mentor, Bernard Lown, a Nobel Prizewinner.

To his patients, Graboys was also a beloved friend who would sit and talk with them on an office sofa after their exams and handwrite individualized plans for their care. He gave out his home phone number to patients and often composed short notes of faith in their future that they could carry with them.

With two daughters and a 35-year marriage to his "soul mate," Caroline Rigby Graboys, he was, as he says, "to use a well-worn cliche, on top of the world in every way. I was blessed."

Then, in 1998, when he was in his 50s, he lost Caroline to cancer and began to notice that he had slight hand tremors and moments of confusion. At first, he wrote them off as symptoms of his stress and grief after Caroline's death. Then he went into full-fledged denial -- something he had witnessed many patients do but couldn't recognize in himself.

As the symptoms escalated over the next five years, he became desperate to conceal them from his colleagues and patients -- potentially, he admits, even compromising their care -- until his coworkers intervened and pressured him to give up his practice at the age of 62. He also kept the disease from his fiance, Vicki Baker (now his wife), even hiding from her the fact that he fainted on their wedding day -- something he is deeply embarrassed by now.

In his book, written with journalist Peter Zheutlin, Graboys is as relentlessly honest about this period as he is about his life now. Where he fought to hold onto his work and his life just a few years ago, he now fights just to "hold on."

Readers with Parkinson's and Lewy body disease and their caregivers will relate to -- and probably find much relief in -- his revelations. Graboys admits to carrying "cassettes" of conversational riffs in his mind to carry him through social situations and using words he once thought pretentious to compensate for his intellectual losses. He talks about the hits the disease has taken on his sexuality and self-esteem, his anger -- as well as that of Vicki, his primary caregiver -- and both of their anxieties about the future. He provides an outstanding discussion about the moral and practical complexities of planning one's own death.

From his unique vantage point as both patient and doctor, Graboys also writes compellingly about the stresses on caregivers and families. He offers useful advice on what patients should expect in a doctor and the importance of therapy, spirituality, exercise, and staying positive to maintain as much control as possible when dealing with a disease whose hallmark is loss of control. 

For Graboys, taking control included writing Life in the Balance and talking about it, despite the considerable challenges both have posed as his disease has progressed. The book, he says, was both an "act of defiance" and "the only way I know to continue to be a doctor."

Though he sometimes faltered and lost his train of thought in his interview with Caring.com, his dry sense of humor came through, and it was clear that Parkinson's, which has taken so much from him, has not taken away his compassion for others. As a doctor as well as a patient, Graboys clearly still has much to offer.

Do you think your book will be a "must read" for people with Parkinson's and their caregivers?

It isn't the kind of book you give to someone and say, "Have a great time reading this," but the idea was for it to be an impeccably honest memoir. If you're not totally honest, then there's no point in doing it.

What was the biggest surprise about the disease for you?

What no one really tells you -- what no one can really articulate -- is that Parkinson's affects your life every millisecond, waking and sleeping, in ways that go from A to Z. On any given day I'm good, bad, or indifferent. And many times I'll tell my wife, I'm just totally fatigued and I can't function.

Having said that, it's important to communicate to patients and families that you don't have to go this alone. There are lots of new medicines on the horizon. I'm optimistic that they will come up with a drug combination that will at least make things reasonable for patients with this disease.

What's the most important thing a family and support network can do for someone with Parkinson's?

Bind together so there's a commonality of spirit and effort, and that results in diffusion of the problem. One of my daughters is in Boston and one in San Francisco, but they speak to me every day, and that has been going on for years since their mother died.

What do you think is the most difficult thing for caregivers and family when a person is diagnosed with Parkinson's?

To understand on a day-to-day basis the complexities of the problem and to realize that when something happens, it's OK to say it's the disease.

You seem to feel a strong responsibility to your family, to reassure them and "stay in the game." Isn't that exhausting for you?

My therapist has said to me many times, "You expend an incredible amount of energy just to keep your head above water." It's quite incredible the amount of energy necessary just to go along, and that has ramifications in my life also. I spend my entire life in a state of vigilance now.

I want to make sure my grandbabies know who I am, so I make trips out to California, which are tiring but very worthwhile, I think. Hope is an important piece of this. If you take away hope, you're left with despair, and I'm not going to be despairing.

In the spring of 2007, you began taking the drug Namenda in combination with Aricept to improve cognitive functioning. You write near the end of your book that you felt it had helped put your disease in remission. Is that still going well?

It kind of plateaued. There's a trial going on to see whether Namenda added on to Aricept improves symptoms. I know probably half-a-dozen people now who are on both drugs, and it seems to have plateaued for them too.

I have some good days and some not so good days. It all depends on what symptoms we're talking about. For example, motor problems with Parkinson's are generally taken care of by the drugs I'm taking. That's helpful. But cognitive functioning, the ability to do math -- all the little things that indicate you're on track -- are less predictable, and frustrating.

I think there's a window of opportunity that occurs each day with the drugs, and those are the times when you communicate well, like the way you and I are speaking now.

I joke with people that you feel lousy before you take the medicine, you feel lousy while you take the medicine, and you feel lousy after you take the medicine. So what's the point?

You write that many doctors don't discuss sexuality with Parkinson's patients unless the patient brings it up. But you believe that drugs such as Viagra can play a critical role in helping men with the disease hang onto their humanity.

Sexuality is complicated because the reality is that some of the drugs depress libido and interfere with the ability to maintain an erection. That area is not discussed virtually at all beyond token lip service to it. But we're seeing younger and younger men with the disease, myself included, and before all this started I had a normal sexual appetite.

I also think it's important to focus on intimacy and not just be focused on whether you're going to have an erection and reach orgasm. It's important to reassure people that you can have an intimate relationship that's not focused in an extreme fashion on sexual function.

How did you come to terms with being dependent on and accepting help from others?

I haven't. Each day, it seems, the disease chips away at my independence, which makes me angry and frustrated. But you have to develop a psychological plan with this to stimulate your brain and your body. Those are key elements.

And I think people who are part of a group do better than those who are alone. If you're involved with temple or church, those groups give you an infrastructure of support.

You wrote that you fought for your job as if you were fighting for your life -- and in some ways they were the same thing. Has anything replaced practicing medicine for you?

I'm getting back into talking with patients who have this disease. I'm not prescribing medicine, not seeing them as a doctor, but just sitting down and talking to them. They need to talk to someone.

You advocate that the families of Parkinson's patients go with them to their doctors' appointments, because the families also afflicted by the disease. What can the patient's doctor do to help the families?

Sit down and talk with them. We learn so much more from talking to the family than from just the patient alone. In fact, it's negligence not to talk to the family.

Doctors sometimes say they miss a lot about families by no longer doing house calls.

I was recently asked to speak to a physician at Brigham and Women's Hospital who has Alzheimer's. I went into this physician's house. The room was very small -- eight by ten feet -- and there was a giant dog in there. It turned out this physician raised boxer puppies. If I hadn't gone to the house, I wouldn't have known about the dog, and the boxer is a big part of her life and her independence.

How do you deal with your anxiety about the future?

Every day it comes up in one way or another. I never have a period of time where I'm free of it. One anxiety is of being in the situation where I'm wheelchair dependent, and that's not acceptable to me.

[The idea of patients' ending their lives] is another area that needs to be exposed and discussed. It's very complicated. And we're creating almost an epidemic of illnesses because the technology allows us to keep people alive well beyond when they necessarily want to stay alive. They used to think that Parkinson's was simply an 85-year-old man sitting and having a tremor. But it's so much more than that.

Do you think people often mistake your symptoms for something else?

I've had problems with my gait and I'm sure people thought I was drunk or who knows what. That's another big area -- how people treat you when you have a condition like this. There's a lot of impatience but also little acts of kindness that sometimes surprise you.

Are there any incidents that stand out in your mind?

Well, I was in the grocery store, and I always have trouble getting cards out of my wallet and then I didn't know how to put it through the little thing you put the credit card through. And I kept hearing the person behind me "shushing.". Finally, he just reached over and took the card and ran it through and handed it back to me. And I said, "You really didn't have to do that."

You used to write your patients little notes about the future to help keep their hopes up. If you were a doctor to a Parkinson's patient right now, what would you write to that person?

That there are many good things going on with the disease. There's tremendous support and money out there to work on research.

I'd also say that you've got to have a sense of humor. If you take it all so seriously every day, it'll just beat you down. Try not to whine too much; it's a waste of energy.


Comments


almost 2 years ago, said...

I was deeply saddened today to learn of the passing of my long time friend Tommy Graboys. We grew up together as we lived across the street from one another. He took care of my parents as their doctor and as their friend. My mother use bake cookies for him when she and my dad went for their yearly check-ups. He was quite a guy. He will be greatly missed. My condolences go out to his wife Vicky and his beautiful daughters Penelope and Sarah. From an old friend: Steve F


about 3 years ago, said...

What wonderful information and candor from the doctor. I can't wait to read this book. I hope you can find a way to get this book known to more people. Barnes and Noble perhaps. My mother has Parkinson's and it is so sad to see the changes. Thank you for writing this book. Best of luck to you and your family.


about 5 years ago, said...

I'm grateful for this. Thank you.


about 5 years ago, said...

Excellent article. Very informative.


about 5 years ago, said...

Everything Dr. Graboys has to say. I'm the caregiver for my significant other who has dementia and is a wonderful patient. He was diagnosed 5 years ago.


about 5 years ago, said...

What i should have mentioned in my comments is that i have had PD for 20years,there are many things i do not have answers for,, but just get on with living one day at a time ,because i can't be certain that today will be a g ood day, Tomorrow may not be so OK,


about 5 years ago, said...

This interview was well received by me as every comment /answer made a lot of sense and I can relate to them with respect to my Mom. I got a lot of information. Many thanks.


about 5 years ago, said...

THis was very helpful ,putting cards into card terminals is a problem ,firstly to extract a card from your wallet, then to slide it thru the slot, this is where i come unstuck , my hand will not stay still enough to place it in rite spot. people are generrally helpful in offering to do this for you ,I appreciate their help, i can get it done eventually but when you have people cued up behind you then i dont mind some one helping me.


about 5 years ago, said...

i have parkinson's and am 76, have had about 11 years. i am so sorry to read about the doctor. he said it all, i feel like he said. i have had DBS the rechargeable one that lasts for 9 years. at my age i will probably die before they do. any way the only thing the DBS did for me was to help with the tremors. my gait is gone,i i am constantly freezing, my husband bought me a scooter so i am able to get from one room to another, and not take 15 minutes to get there. a therapist said i was lucky to get parkinson's in my late 60's as i probably will die of a stroke or heart attack before pa. gets me!!!!! thanks dr. for that info.


about 5 years ago, said...

My brother has PD and it is very good to read some of the comments from others who have the disease so you can better understand what they are going through. It helps me as a caregiver to give him my full attention when he wants to talk and know that each moment we share is a blessing from God.


about 5 years ago, said...

The entire story shows how important support system is... and his coping mechanism...


about 5 years ago, said...

I'm a nurse, my mother had Parkinson's and I've had many patients with Parkinson's. Dr. Grayboys eloquently describes the difficulties of living with Parkinson's and offers support, hope and encouragement which are very beneficial to both patients and caregivers. He is a very special man. I want to read his book.


about 5 years ago, said...

The REAL Dr.Thomas Graboys as I knew him I was a prominent Physicians wife had seen Cardiac Physicians World-Wide Dr.Graboys was the only person/physician who gave me direct clear, hopes, confidence, that I was not going to die, plus an explanation of my lifelong pursuit of "what is wrong with me " from childhood in Australia, now diagnosed as "Addisons Disease " or Adrenal Insufficiency the late J.F.K. Had this problem controlled with steroids, also the basis for my disease or bizarre cardiac entilty, Dr.Graboys continued reassurance that "you are not going to die" instilled in me the hopes to do much for others as he had done for me. Over periods of 30+ years, he "never gave up on me I wish he had known the outcome which only recently surfaced as a full blown disease "ADDISONS DISEASE" this structured my entire life I married 2 Drs I lived in continual fear of dying due to the many types of irregular rhythms which began as an 11 year old child in Australia. " Dr.Graboys reassurance was true . A former patient. Virginia Gibbes Richardson He was a Physician who was always there to answer your Question !


almost 6 years ago, said...

My husband passed away 2 years ago, of a sudden heart at.tack he never had heart trouble. he was diagnosed with parkinsons in 2003,It was told to us that he had an early stage and it would take time to progress, years perhaps 20. Well, that was not the case. he took at the beginning very low does of sinimet with an agonist. Befor you knew it the symptoms got worse. time between doses became closer. the agogonist caused a compulsive gambling habit. it was not noted at the time that this was a problem with this..later in 2006 it was labeled. He worked. he was a educated, wonderful loving husband, father of 4 top in his field. Parkinsons was a disease that was stripping him simpletasks. he was a proud man, extremly overshadowed by this disease. reading Life in a Balance describes what he went through..I bought this book for him, and the he died. I read it after amonth since his passing. Boy, did this describe what he was going through. he often said , if this is now, I don't want to live to see the future progression. He didn't. Even his Dr. was suprised. he just saw his neurologist 1 month before. What a shock for us all. I anticipated a future as a care taker. he a proud , handsom 6;1 hunk of a man couldn't. I will be ever so sorrowful for the rest of my life for the loss of him.. Our children wish for 1 more minute with this amazing man. Yes, the difficulty caused with the medication that caused his gambling and the debt left behind is an important part of our life. But, the man he was and basicallystill was tried to be apologise for the 2 mistakes he said he made in his life, 1 basicallyGETTING PARKINSINS and TAKING MERIPEX which caused his compulsive problem .Did he die from a true heart attack or did Parkinsons cause the heart attack, Or did he just give up??????????????????????


about 6 years ago, said...

As a Parkinson's patient myself, I appreciate the detail included in this article. To have a physician articulate so well with the average patient and be so "honest" in his experiences.......well, you just don't find that very often. "Thank You from the bottom of my heart." Never stop being the "superb" physician that you are!


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