You can now purchase your copy of “Deep Brain Diary: My Life as a Guy with Parkinson’s Disease and Brain Surgery Volunteer” as a $15 paperback, instead of as a $35 hardcover. Either way, 100 percent of whatever cut I get as the author from the sale of this book will be donated to the National Parkinson Foundation.
That means this book is now available as a paperback , a hardcover , a PDF download , on Kindle , and soon to be on iPad. The expense I’ve incurred in self-publishing this book SHOULD give you a clue how serious I am about telling this story, how a diagnosis of Parkinson’s disease is NOT a “death sentence.” How it’s better to FIGHT a disease than it is to just sit back and take it. How important clinical research and participating in clinical trials can be in the search for better treatments and cures.
In my own case, for instance… the Vanderbilt University Medical Center I’m a part of, looking into the safety and tolerability of in early Parkinson’s disease, is going to be expanded from the first 30 of us (15 had the surgery, 15 are in the control group), to medical centers nationwide the Cleveland Clinic, , the , Rush University, , , the , and the . From 30 initial volunteers, this study will expand in the next two years to include hundreds if not THOUSANDS of folks in the early stages of Parkinson’s. And if that turns out to be a successful study, then sometime in my lifetime (hopefully) deep brain stimulation will be the treatment of choice in early PD when it’s easier to do, rather than in later PD when finding that “sweet spot” in the brain becomes more of a challenge. And if it turns out from this study that DBS actually slows or reverses the progression of the disease? How cool would THAT be?
I was part of it in the early days. I was one of the pioneers, along with 14 other brave souls who volunteered for brain surgery and 15 TRUE heroes who continue to participate in the study just by taking their meds and being used to compare against those of us who had the probes inserted deep into our brains.
You can take part in PD research as well by purchasing a copy of this book. I take you right into the operating room with me as I stay awake for the entire brain surgery. (The neurosurgeon took my picture with his cell phone while I was on the OR table and sent it to my wife in the waiting room, along with a note. “Mrs. Schmalfeldt you will be pleased to learn that we have opened two holes in your husband’s head and found brain in BOTH of them.”)
It’s a funny story, a human story, some entries are optimistic, some are not so cheerful, but throughout you will sense my determination to fight this disease to the death.