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A Personal Education in Parkinson’s

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    My father, who’s now 73, was diagnosed with Parkinson’s disease a few years ago. As is their wont, my parents have embraced the challenge with outward cheerfulness and optimism. Since I didn’t know much about Parkinson’s at the time, but I do know my parents fairly well, their sudden, pronounced optimism was one […]

May 22, 2013


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My parents and me.

My parents and me.

 

My father, who’s now 73, was diagnosed with Parkinson’s disease a few years ago. As is their wont, my parents have embraced the challenge with outward cheerfulness and optimism. Since I didn’t know much about Parkinson’s at the time, but I do know my parents fairly well, their sudden, pronounced optimism was one of the first signs for me of the seriousness of the condition.

 

The first thing I thought of—and I’m sure I’m not alone here—was tremors, which, in mild manifestations, if you don’t really devote any time to educate yourself, seem little more than a physical and aesthetic inconvenience. But, as has become abundantly clear, Parkinson’s tremors have a serious cause—one that extends to many other symptoms and ailments, as well. For as uneducated as I have been, every new bit of info is a revelation.

 

For instance, I interviewed Bradenton sleep specialist Dr. David Law for our annual Top Doctors feature in June, and he told me about “REM behavior disorder” (RBD), which inhibits the natural paralysis we’re supposed to have during REM sleep. Essentially, with RBD, you thrash around, acting out your dreams. This disorder, Dr. Law told me, can be related to the family of neurodegenerative disorders that includes Parkinson’s—and can manifest years earlier.

 

I told my parents about this, and they smiled and nodded knowingly.

 

So yesterday, I visited Judith Bell and Dr. Dean Sutherland of Sarasota’s Neuro Challenge Foundation, a nationally recognized resource for Parkinson’s patients and their families. It was eye-opening.

 

Parkinson’s is caused by the progressive death of brain cells that make dopamine, a neurotransmitter that, in part, helps you modulate movements. Early symptoms might include stiffness, a soft voice, a loss of facial expression; in later stages, Parkinson’s can involve memory loss, hallucinations and other forms of dementia. There are a number of drugs available, some of which address the dopamine loss directly, while others address the individual symptoms. There’s also deep-brain stimulation, and other treatments still being developed. Also, “Exercise is as important as anything you can do,” says Dr. Sutherland.

 

While Parkinson’s was traditionally diagnosed by a physical assessment, there’s now an FDA-approved test for Parkinson’s called a DaTscan.

 

There’s optimism that, as doctors learn more about the causes of Parkinson’s, they’ll be able to develop even more successful treatments—and hopefully a cure. Like Alzheimer’s, Parkinson’s can be traced to a faulty protein that, in a sense, “convinces” the proteins around it to become malformed as well, so that the condition spreads somewhat like a virus. (It’s not a virus, and Alzheimer’s and Parkinson’s involve different proteins.) In a moment of random science trivia, I was able to connect this process to an article I read in TIME more than a decade ago about bovine spongiform encephalopathy—mad cow disease—which also stems from a malformed protein convincing its neighbors to go bad.

 

While all this science is fascinating—and, let’s face it, reassuring, in its own way—to me, Judith Bell, the executive director of Neuro Challenge, describes a “whole person” approach to treating Parkinson’s, taking into account the social and emotional toll it can have on patients as well as their friends and families. “Because it can have visible symptoms and challenges, people can become reclusive, and friends can become uncomfortable,” she says, emphasizing the importance of education in helping everyone be more comfortable—and, ultimately, able to look past the condition and back to the human being. “People with Parkinson’s are more than their disease.”

 

As for Dad, he walks, rides his bike and lift weights daily—and, especially for such a private person, he’s astoundingly open about having Parkinson’s; he’s more likely to bring it up than anyone. With that approach, he and my mother both have made it easy to accept, deal with and, often, look past entirely.

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