Been awhile since I’ve showed you folks how unbalanced I am. Physically, that is. Mentally, well, you can pretty much judge that by what I write.
But here’s a video I shot this afternoon of me doing my PT “balance” exercises. Notice the quotation marks around the word “balance.”
Enjoy. And please, laugh quietly. I have feelings, ya know…
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! 🙂
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I was the first one up this morning. At around 5:45, Raven began her regime of “head flapping,” which is a technique she uses when she wants to make noise and be noticed without going as far as “barking.” She did this for awhile. Then she sat on the floor and scratched herself, making sure her leg pounded the floor like she was Thumper. Then she started with the flappity-flappity-flappity again. Then I felt something press down on my mattress. I looked. It was a very sad dog face. She noticed that I had looked at her, and suddenly the JOY returned to her face. She started making whiny, happy, “I gotta go potty” noises. She went over and bottlenosed Mom’s bed, as if to say, “It’s OK, Mom. DAD’s got me!”
I grabbed the handle of my walker and pulled myself into a standing position. Then I had to grab it again to keep from falling backwards back onto my bed. I shuffled to the door, let Raven out, went and released Shiloh from her prison. (There was a “blue bag of shame” on the porch this morning, meaning Shiloh went poopie in the kitchen during the night. We give up.)
I took both dogs out, made preparations to make coffee, then made this video.
Sorry about the whiny nature of that, but I’m feeling down and discouraged this morning. I feel like the only people who really care are my family and close friends.
And besides, I’m having a bad Parky day. Right now, my shoulders and upper arms are tight and sore, just from typing this.
So, I guess I’ll stop.
I’m supposed to be doing these exercises for my Parkinson’s disease twice a day. I’m having variable levels of success. As far as the “Big Walk” goes, I’m doing quite well… as long as that’s all I have to do. If I have to turn my head from side to side, I freeze on every step. Not so bad with the nodding my head when I walk, but I still freeze.
Then, I demonstrate the Romberg tests we do every day at PT. You will see various degrees of stability.
Enjoy the video!