Press Release: Parkinson’s Disease Patient’s Story Goes Multimedia, Proceeds to Benefit PD Research
Posted Apr 22 2010 7:57am
“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. He takes you into the operating room with him, remaining awake for the seven-hour surgery to implant probes deep into his brain to alleviate some of his symptoms. 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. I just want folks who are touched by PD to realize that they are not alone. If they’ve been embarrassed by drooling in public, I’ve been there. If they’ve been humiliated by staring onlookers during an episode of dyskinesia (uncontrollable movements caused by medication), I’ve been there. If they’ve found themselves frozen in place while walking, I’ve been there. Parkinson’s affects each patient differently. But 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 the search for cures, as well as new and better treatments for diseases. 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.
“In my clinical trial, we started out with 30 people. Fifteen of us were randomized to the surgical group, 15 were randomized to the control group, meaning they would continue to take their regular medication and then be compared at various intervals with those of us who had the surgery to see if our rates of progression differed,” he said. “The theory this clinical trial is trying to prove is that doing deep brain stimulation (DBS) surgery earlier in the course of PD will be beneficial to patients, and may even slow down or reverse the progression of the disease.”
Schmalfeldt noted that the study is currently seeking the funds to expand to medical centers around the country, enrolling hundreds of new Parkinson’s patients. 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.
“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.