What I Wish I'd Known About Parkinson's Symptoms: Doctor Thomas Graboys
"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," says cardiologist Thomas Graboys, one of the many people whose Parkinson's includes Lewy body disease, an associated form of dementia that includes side effects such as hallucinations and violent nightmares.
"People used to think that Parkinson's was an 85-year-old man sitting and having a tremor," Graboys says. Michael J. Fox brought the public face to face with the reality that it also strikes younger men. But because Fox's main symptoms are involuntary body movements and tremors, many people who are diagnosed with Parkinson's and their caregivers are often surprised to discover that that's not all there is to it.
"It's so much more than that," says Graboys, a 64-year-old cardiologist who once held positions at Harvard Medical School and Brigham and Women's Hospital in Boston. Speech, visual perception, body temperature, blood pressure, sexuality, and, of course, cognition are all affected by the disease, he says.
Graboys paints a poignant and honest picture of his struggle with the disease in Life in the Balance: A Physician's Memoir of Life, Love, and Loss With Parkinson's Disease and Dementia, written with Peter Zheutlin. But, as he used to do with his own cardiology patients, he also offers a prescription beyond medicine for staying ahead of his condition: Make a plan for living.
"Proactive patients fare better than those who are passive," Graboys writes. But because of the global effects of Parkinson's with Lewy body disease, many people give up to the disease too early.
Instead, he says, make a plan that includes "all the things you wanted to do in life (or want to do now) but didn't have the chance to do -- visit the Great Barrier Reef, learn a language or how to play bridge, write a book, read the classics -- and do at least some of those that are still within your grasp."
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