My World of Parkinsonian Delights

Video

Stumblebummery on Video

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…

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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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Gotta Exercise Every Day

Or the Wii will SCOLD you… as you will see in the video below… in which I am tragically killed.


Another Fun Day

Oh Boy!  It’s another fun day with Parkinson’s disease!  Day #3,783 since diagnosis.

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.


Physical Therapy for Parkinson's — My Home Exercises

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!