This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Wednesday, July 2, 2008

Graboys, Life in the Balance

I just read Dr. Thomas Graboys' book Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia. I liked it very much, but it is definitely a memoir--the focus is on one person's feelings, not on providing useful information.

Dr. Graboys is a cardiologist who was diagnosed with Parkinson's disease and Lewy Body Dementia in his early 60s. He writes a lot about his denial and how hard it was for him to give up his work as a doctor. He lives in a privileged world (he and his wife have a full-time housekeeper!) and had a very high opinion of himself. Some people might find that annoying in the book, but I like his honesty in admitting it and writing about how much he is losing to dementia.

I've heard some frustration about the book in the Yahoo LBD spouses group. An interview with Graboys on Good Morning America last week talked about Parkinson's, not Lewy Body Dementia. But in the book it seems to me he is quite clear about Lewy Body Dementia, and I gather he also was in an NPR interview here: http://www.wnyc.org/shows/lopate/episodes/2008/04/10/segments/96594

The book is certainly only about the early stages of the disease, and a fairly gentle version at that (no significant hallucinations yet). Graboys says he cannot bear to think about what it will be like when the disease progresses. He does imply that he would wish for assisted suicide at the point where he no longer can recognize the members of his family.

To some extent this book is a contradiction in terms--how can someone write about his own dementia when that dementia limits his ability to understand what is going on with him? I think he does a remarkable job of getting past that, but there are ways in which he does not understand how bad it is (and his fears have kept him from doing a lot of research on the disease). He is also a bad role model in a couple of respects, particularly that he is still driving.

What I like about the book is that it gives me a sense of what it would be like to be in John's head. I don't think John has felt all the feelings Graboys writes about but I hope John will read the book because it might give him a model to help him recognize his own feelings.

I would recommend this book to anyone who has a family member in the early stages of the disease, for that glimse of what it might feel like to be the person with LBD. It doesn't give much sense of his wife's perspective but the situation itself is gripping--his first wife died of cancer and he remarried just as he was beginning to show symptoms. The book includes letters from his children that seem to me quite open about the different feelings they have. But again it is early stages, he doesn't require their care yet. I hope in a few years his wife or one of his children will write a continuation of the story.

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