My World of Parkinsonian Delights

The Story Behind "No Doorway Wide Enough"

Sometimes ya gotta toot your own horn to get noticed.  Hence, this press release.

Bill Schmalfeldt thought his story was worth telling. After being diagnosed with Parkinson’s disease in 2000, having experimental deep brain stimulation surgery in 2007, Bill wrote a manuscript about the experience. Not only could he not find a literary agent willing to even look at it, publishers rejected it without even reading sample chapters. Believing the story needed to be told, Bill dug into his own pockets and took the self-publishing route. Now he’s donating the author proceeds to the PD organizations that helped him.

After writing a book about his experience as a brain surgery volunteer, a Maryland Parkinson’s disease patient believed his story would make an interesting book. But after years of failing to interest numerous book agents and getting rejection slips from publishers who didn’t even request sample chapters, Bill Schmalfeldt decided to take matters into his own hands. Reaching into his own pocket, he has self-published his story and is donating 100 percent of the author’s proceeds from the book’s sale to help find a cure for this crippling, degenerative neurological disease.

No Doorway Wide Enough” is Schmalfeldt’s personal story about living with a neurological disease that afflicts over a million Americans. 100 percent of the author proceeds will be donated to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center.

“I was diagnosed at an NPF clinic in Miami and Vanderbilt’s Neurology Department is looking to expand their DBS clinical trial from its current 30 patients to a nationwide trial involving hundreds, if not thousands of folks like me. I felt I should help any way I could,” Schmalfeldt said.

“The title comes from my days as a Navy hospital corpsman at the former U.S. Navy Home in Gulfport, Ms.,” the 55-year old author said. “I used to wonder why it was that some of the older folks tended to stop and ‘size up’ a doorway before walking through. I did a spot-on impression of this effect for my friends at parties. Got lots of laughs. Now I know the reason for it.”

Written in the style of a diary, Schmalfeldt weaves a tale that starts with being diagnosed at age 45, why he decided to participate in an experimental clinical trial that involved brain surgery, and his recovery and life afterwards. With a wry and sardonic sense of humor and writing style, Schmalfeldt weaves an easy-to-read tale of his personal struggle with the disease, pulling no punches over his frustration over the mixed results of his surgery. “It’s the story of my Parkinson’s decade — 2000 to 2010,” Schmalfeldt said.

“This book is written not only for the Parkinson’s disease patient,” Schmalfeldt said, “but for anyone who knows, cares for, or loves someone who has this beast of a disease. The one thing I want people to take away from this book is that Parkinson’s disease is not a death sentence. It’s a life sentence.”

Schmalfeldt said that the book was also meant to highlight the importance of clinical trials in medical research. In 2007, Schmalfeldt volunteered for a clinical trial at Vanderbilt University Medical Center in Nashville to test the safety and tolerabilty of deep brain stimulation in early PD.

“Clinical trials are vital in the search for new treatments and cures in a variety of diseases,” said Schmalfeldt, who works from home as a writer-editor for the Clinical Center at the National Institutes of Health in Bethesda, Md. “Without people volunteering to take part in this kind of research, scientists would have a much harder time finding new drugs, treatments and outright cures for the diseases that have plagued mankind throughout the years.”

Schmalfeldt learned about the clinical trial at Vanderbilt in the course of his duties at NIH. “I write and produce podcasts about the importance of clinical trials,” he said. “What kind of hypocrite would I be if I saw a trial that I was qualified for and didn’t participate?”

This is Schmalfeldt’s first try at non-fiction. His previous works, “…by the people…”, “Undercover Trucker: How I Saved America by Truckin’ Towels for the Taliban,” and “Hunky Dunk,” are available at his author’s website, Books O’ Billy.

Now buy a damn book!  🙂

A Parkinson’s disease patient who underwent experimental brain surgery is donating 100 percent of the author’s proceeds from a book he has written on the subject to the people who helped diagnose and treat his condition.

“Deep Brain Diary: My Life as a Guy with Parkinson’s Disease and Brain Surgery Volunteer” is Bill Schmalfeldt’s personal story about living with a neurological disease that afflicts over a million Americans.

Written in the style of a diary, Schmalfeldt talks about how he discovered he had the disease at age 45, why he decided to participate in an experimental clinical trial that involved brain surgery, and his recovery and life afterwards. With a wry and sardonic sense of humor and writing style, Schmalfeldt weaves an easy-to-read tale of his personal struggle with the disease, pulling no punches over his frustration over the mixed results of his surgery.

Now, “Deep Brain Diary” is available not only in hardcover, but as a paperback, a PDF download, an Amazon “Kindle” book, and soon, as an iPad book offering.

“This book is written not only for the Parkinson’s disease patient,” Schmalfeldt said, “but for anyone who knows, cares for, or loves someone who has this beast of a disease. The one thing I want people to take away from this book is that Parkinson’s disease is Not a death sentence. It’s a Life sentence.”

Schmalfeldt said that the book was also meant to highlight the importance of clinical trials in medical research. In 2007, Schmalfeldt volunteered for a clinical trial at Vanderbilt University Medical Center in Nashville to test the safety and tolerabilty of deep brain stimulation in early PD. Schmalfeldt said 100 percent of the author proceeds from sale of his book will be donated to the National Parkinson Foundation as well as the Vanderbilt University Medical Center’s DBS Research Fund.

“I was diagnosed at an NPF clinic in Miami and Vanderbilt’s Neurology Department is looking to expand their DBS clinical trial from its current 30 patients to a nationwide trial involving hundreds, if not thousands of folks like me. I felt I should help any way I could,” Schmalfeldt said.

So far, the reviews posted on Schmalfeldt’s Amazon.com page have been positive.

From Belle W.

“Diagnosed with Parkinson’s disease at age 45, Bill Schmalfeldt refused to go quietly. Instead, he volunteered for experimental Deep Brain Stimulation surgery.

“‘I make a living telling people about the benefits of clinical research,” writes Schmalfeldt, a former Navy corpsman, now a media guy, author, and blogger. “What kind of a hypocrite would I be if I didn’t take the opportunity to put my money where my mouth is?’

“Still, being a DBS clinical trial volunteer takes moxie. Neither Schmalfeldt nor his doctors could predict how things would turn out. He doesn’t flinch from blunt appraisals of living with an incurable, degenerative disease, and deploys gallows humor for those special moments: the drilling-holes-in-the-head part; how his deep brain sounds via implanted electrodes, in real time; how even the best hospital does inscrutable things to scrambled eggs; and how to deal with able-bodied slackers in the handicapped seats.

“You’ve heard of ‘being a partner in your own care’? Schmalfeldt’s the poster guy for that, and an advocate for other “Parky” people. In choosing to be a clinical trial volunteer, then persisting in writing about it and its aftermath, he’s rejected the role of passive patient. Whether he’s ribbing the staff, loving his wife, or querying God (without a whiff of proselytizing, thank you), this is a hero’s story. Best of luck, Bill!”

This From Harrison W.

“I worked with Bill some years ago when he hosted audio programs about health topics for a federal agency. I learned a lot from him, and was curious to read about his experiences with Parkinson’s Disease, particularly his participation in a clinical trial of deep brain surgery. Bill tells his story both with brutal honesty and with humor, without ever getting maudlin. He explains why he chose to enter the study and details his progress. In the end, though, this is more than a book about the course of a disease. You get a window into the daily life of a remarkable man and a warm, loving couple that can sustain a fighting spirit and sheer joy in being together, whatever the challenges they face.”

This From Cindy M.

“After reading this first chapter of this book to review it…I was surprised by the way Bill could add humor and emotion to a difficult disease. His writing is engaging to the point I want to read more. PD is a disease that presents itself in many ways to many people. We need to educate ourselves in order to contribute anything to our own life as well as others suffering from PD. Thank you, Bill. Excellent job!”

“Deep Brain Diary” is available as a 249-page hardback at Lulu.com as well as from online booksellers such as Amazon.com, Barnes & Noble.com and Booksamillion.com for $35. The paperback version is available at Amazon, Barnes & Noble and Books-A-Million for $15. A PDF download is available for $5 at Lulu. An Amazon “Kindle” version is available for $5. The book is available from Apple’s iPad book store as well. Review copies are available by request from the author’s website.

“Deep Brain Diary” is Schmalfeldt’s first try at non-fiction. His previous works, “.by the people.”, “Undercover Trucker: How I Saved America by Truckin’ Towels for the Taliban,” and “Hunky Dunk,” are available at Amazon, Barnes & Noble and Books-A-Million.

He blogs daily at http://parkinsondiary.com.

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6 responses

  1. Shantie

    Dear Mr Bill,
    I am delighted to say that today I have received “No doorway wide enough”
    I hope many more people will buy your book as it is for a really good cause. People don’t have to wait until someone they love dearly have a condition to do something to help research. People should remember the say “It could be you!”
    Never give up Bill and carry on the good work you do on the website
    Thank you

    June 29, 2010 at 6:01 pm

    • Parky Bill

      I’m thrilled that you received it, and I hope you enjoy the book!

      June 29, 2010 at 6:06 pm

  2. Pingback: Each Book Sold So Far Has Cost ME $80! — My Parkinson's Disease Diary

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  5. Pingback: Each Book Sold So Far Has Cost ME $80! | Parky Bill's PD Place

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