“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. Or else, it will be a religious tome about how all I have to do is ‘hold onto the healing hands of the Lord and he will cure me of this affliction.’ Or, even worse, it will be one of those ‘I had PD, Alzheimer’s, multiple sclerosis and the heartbreak of psoriasis and I cured ‘em all by chewing on the root of the tanna leaf tree for 10 years!’ 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.
“See, I think that’s part of the problem I ran into with Deep Brain Diary and No Doorway Wide Enough. I was trying to be light, airy, humorous, sarcastic and satirical, but there was a message in there. There was a subtle attempt to teach folks… to raise awareness about Parkinson’s disease. We won’t have any of that in this new book,” he said.
He also blames the length of his previous two efforts for their failure to sell. “I mean, my , 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 !” 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.
“When you think of PD, you think first of the tremor,” he said. “I’ve never had tremor. Tremor is not the most debilitating part of the disease. The other three of the four cardinal symptoms are worse… the slowness, the stiffness, the balance problems. And then, you get the non-motor problems like memory deficits, speech disorders, mood fluctuations, depression, incontinence, impotence, hallucinations and irritability. Ready to buy a copy yet,” he added with a smile.
He touches on all these symptoms in his new book. According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, PD is caused by the loss of dopamine-producing cells in the brain. The NINDS calls dopamine a chemical neurotransmitter which is needed to produce smooth, purposeful muscle activity and movement. Scientists believe the symptoms of Parkinson’s disease begin to appear when 80 percent of the brain’s dopamine-producing cells have already died. There is no cure.
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 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, not because I’m trying to guilt you into becoming aware about a disease that afflicts 50,000 new Americans every year and they’re getting younger and younger –not because I believe that to ultimately find a cure for Parkinson’s disease, we need and deserve the same kind of full-tilt, no-holds-barred, multi-media education and awareness-raising efforts that have done so much good for other diseases like breast cancer, heart disease, diabetes and muscular dystrophy, and not because sale of the book will benefit two very worthwhile PD charities,” he said. “I want you to buy it 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.