Parkinson’s Patient Hopes You Learn Nothing From His Latest Book

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He didn't write his latest book to educate or enlighten. This Parkinson's disease patient says he wrote the book to entertain and amuse. But if you get a little PD awareness along the way, more's the better.

“You don't see ... folks with PD on TV because... well... nobody wants to see them. Even though the disease is beginning to affect folks in their late 30s and 40s, most folks still have this picture in their mind of an old man, sitting in a wheelchair...

In the foreword of his new book You Never Miss the Dopamine… (until the brain runs dry), Parkinson’s disease patient Bill Schmalfeldt makes his intentions clear.

“This is not an educational book. This is not meant to teach you a damn thing about Parkinson’s disease. In fact, if you find yourself accidentally learning something, I want you to march right back to the book counter and demand a refund…”

The 55-year old writer from Elkridge, Md., explains his reasons for such a statement.

“People get the wrong idea about my books,” Schmalfeldt said. “They see them as books written by a guy with Parkinson’s disease, and they think it’s going to be one of those ‘Oh, poor me! I have a disease that I am bravely suffering through’ kind of books. Who needs it? People can get depressed without my help.”

In part, Schmalfeldt blames the public perception of what he called the, “Look at me! I’m sick! But very brave!” brand of personal story for the poor sales of his first two novels about his encounter with Parkinson’s disease.

He also blames the length of his previous two efforts for their failure to sell. “I mean, my God, No Doorway is 470-pages long! I mean, sure, we all love funny books about guys with diseases, but 470-pages? Who’s got time for that? My name ain’t Leo Tolstoy!” The new book comes in at a manageable 156-pages, Schmalfeldt said. “One long sitting at the potty, boom! You’re done!” he said.

Schmalfeldt says the new book is about Parkinson’s disease, “and the other things that annoy me.” He discusses politics from a liberal point of view. (“Conservatives can read the book, enjoy it, and just blame my politics on Parkinson’s disease dementia,” he said.) He also touches on family life and other issues. But the main focus of the book is his struggle with the non-motor features of Parkinson’s disease.

But Schmalfeldt – who has been diagnosed with the degenerative neurological disorder for almost 11 years – prefers to take a more upbeat approach to his condition.

“I've learned my lesson about trying to teach,” Schmalfeldt said. “Besides,” he added sarcastically, “everyone knows there's only one guy in America with Parkinson's disease, and that's Michael J. Fox! And he's still presentable enough to drag himself in front of a TV camera. So let him teach America about the 50,000 new diagnoses each year and the fact that 1.5 million Americans currently suffer from this progressive neurological disorder. He's a famous guy! And he makes the viewers feel good about themselves when they say, "Awwww! Look at at how brave he is to go on TV when he's twitching and writhing around in his seat. Famous guy like that could just hide in his mansion and not have to worry about teaching anyone else or raising awareness or raising money to find a cure. Hey! Isn't it time for 'Big Brother'?"

Schmalfeldt explained why it seems that Fox is generally the only public spokesperson for this disease that afflicts an estimated 1.5 million Americans.

“You don't see other folks with PD on TV because... well... nobody wants to see them. Even though the disease is beginning to affect folks in their late 30s and 40s, most folks still have this picture in their mind of an old man, sitting in a wheelchair, his chin on his chest, his shirt wet with drool, a look on his face of total disinterest and lack of emotion, the only movement his right arm and leg which just won't stop shaking. A normal person's reaction? ‘Why would I want to spend money on HIM? He's gonna die soon anyway! And he's old! And drooling! Eeeeew! Hey! Isn't it time for American Idol?’”

You might think this sarcastic, sardonic attitude comes from a sense of bitterness over the failure of his two previous books about Parkinson’s disease… Deep Brain Diary, which chronicles his condition from diagnosis in 2000 through his volunteering for experimental brain surgery in 2007… and No Doorway Wide Enough, which builds onto and continues the story through the summer of 2010. He said he is frustrated to a degree, but not because people seem to have rejected his work.

“There's the whole ‘raising money to fight Parkinson's’ thing I was trying to do,” he explained. “I mean, if you don't CARE about Parkinson's disease (other than to get sad when you see MJF or the Champ), why in the world would you buy a book just because the author has agreed to donate 100 percent of his share of the proceeds to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center? I guess to some, it sounds like I'm trying to guilt folks into buying a book because some of the money might go to help someone. So none of that for this book.”

Schmalfeldt said he will donate his author proceeds (if any) from the sale of his new book to these two charities. “I’m just not going to make it part of my advertising scheme,” he said.

Schmalfeldt explained that if one is moved to purchase a copy of the new book (available through his website -- http://parkinsondiary.com – soon to be available at most major online booksellers), one should purchase it for the right reason.

“Buy it, but not because I'm trying to force you to learn something, but because it's a good, funny (and short) book about how a regular guy deals with adversity and you’ll get a laugh out of it.”

He added, “If anything good comes from that, we’ll just call it incidental.”

In addition to his new book, Schmalfeldt’s previous books about Parkinson’s disease and several of his fiction titles are available through his website.

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