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One Last Try, That’s It!

Posted Nov 27 2010 11:39am
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About Me

Diagnosed with PD in 2000 at age 45. I had deep brain stimulation as part of an experimental clinical trial in 2007. I've written a book about the experience that you can find a link to at the top of the page. All author proceeds go to assist PD research efforts.
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I’ve decided on one last try at a press release alerting the media about my new book and how the proceeds will be used to help in the fight against Parkinson’s disease.  If this doesn’t work, get me any interviews, result in any book sales if this turns out to be another $269 wasted, then I give up.

I’ve donated my time.  I’ve spent my own money to publish books that nobody seems to care about.  I volunteered to put my life and my brain into the hands of a skilled neurosurgeon to see if DBS will help stall the progress of the disease if done earlier rather than later.  I did all this to help raise money and awareness and the scientific knowledge base of how to treat this bastard of a disease.  When I die, my body goes to the Anatomy Gift Registry so they can use me to learn whatever else they can learn.  All I can ask in return is that you dig $40 out of your pocket to buy a book ($20 of which will go to my charities), or click the links to donate directly.  I honestly don’t know what else I can do!

Gail and I were watching last night.  spent an hour interviewing .  I always feel so … insufficient … after watching Michael do an interview.  I know he has a celebrity base to build on and the money to start a foundation… but he’s doing SO MUCH to work for a cure.  And here I sit, just a guy with a blog, several unsuccessful attempts to get people interested and help fund research by purchasing a book… I feel like a slacker.

So, I’ve contacted a press release distributor that specializes in new book releases.  Over the next few days, this release will be sent out to media outlets worldwide.

Parkinson’s Disease Victim Seeks to Raise Disease Awareness with New Book

Proceeds from “Put On Your Parky Face” to be Donated to PD Research Charities

ELKRIDGE, MD – November 29, 2010 Hearing Bill Schmalfeldt speak, one can sense a tinge of irritation in his voice.  “Contrary to public belief, Michael J. Fox is NOT the only person in America suffering from ,” he said with a crooked smile.

“Now, that’s not to take anything away from Michael,” the 55-year old writer said.  “He has done so much good since coming out of the Parky Closet in the 90s.  has raised millions of dollars to fight this disease, to look for new and better treatments and, ultimately, the cure.”

The problem, as Schmalfeldt sees it, is that people will see Michael J. Fox in an interview and assume enough is being done to combat this progressive neurological disorder that affects an estimated 1.5 million Americans with 50-thousand new diagnoses each year.  Having been diagnosed at age 45 in 2000, Schmalfeldt thinks more needs to be done to raise awareness about the disease and, as a result, give a financial spark to the search for a cure.

Schmalfeldt tells his story in his new book, “Put On Your Parky Face.”

“This is all about my life as a guy with Parkinson’s, and the other stuff that annoys me,” Schmalfeldt says.

The narrative begins in 1972 with Schmalfeldt working on a North Dakota farm for a grumpy owner with Parkinson’s and his own hubris concerning the disease.  He tells the story of how he first noticed symptoms in 1998 and the difficulty of getting a Parkinson’s diagnosis at the age of 45.

“One doctor told me I was too young to have Parkinson’s,” Schmalfeldt said.  “I said, ‘You would think so, but look at Michael J. Fox!  He was diagnosed when he was 29!’  The doctor frowned and said, ‘Did hearing about Michael J. Fox make you think you had Parkinson’s, too?’  It was like he thought he was talking to an idiot.”

Finally diagnosed on Jan. 31, 2000 by one of the top movement disorder specialists in the country, Schmalfeldt began a journey that saw him go from a person who knew he had a disease, “but it was only a concept,” to a person who began suffering worsening symptoms in 2006, to volunteering for experimental brain surgery in 2007, up to the present day as he files the paperwork for disability retirement from the federal government.  He tells his story with photos, a sharp wit, a great appreciation of irony, an ability to laugh at himself and – as mentioned earlier – just a hint of irritation.

“When I was diagnosed in 2000, the doctor told me a cure was 10-years away.  Tops.  Now look.  We just finished eight years of a presidential administration that banned federal funding to study embryonic stem cells which, at the time, were seen as a stepping stone to a cure – not only for PD, but for diabetes, heart disease, spinal injury, a world of disorders.  And no sooner do we get an administration that puts science above religious superstition, but we get a Reagan leftover judge who bans federal funding yet again – because there’s a shortage of adoptable babies?  WHAT shortage of adoptable babies?  These cells, these frozen blastocysts left over from in vitro fertilization attempts are NOT going to become ‘babies.’  They’re going to be burned as medical waste.  I’m sure God is REALLY pleased by that.”

“Put On Your Parky Face” is a call for people with Parkinson’s, those who know or love someone with the disease, or those who may find themselves someday being one of the 50-thousand new PD diagnoses in a given year, to stop thinking of the disease as an affliction of the elderly.

“We need an awareness movement, like ,” Schmalfeldt said.  “We HAVE a Parkinson’s Awareness Month.  It’s April.  We share it with African American Women’s Fitness Month, Amateur Radio Month, Autism Awareness Month, Cancer Control Month, Child Abuse Prevention Month, , Emotional Overeating Awareness Month, Global Child Nutrition Month, Fresh Florida Tomatoes Month, Month, National Child Abuse Prevention Month, National Pecan Month, and National Straw Hat Month.”

“Put On Your Parky Face” is available through Schmalfeldt’s daily blog, http://parkinsondiary.com .  He’s created a website for the book, http://parkyface.com , and the self-published book is available through Lulu.com as well as most major online booksellers.

The 314-page hardcover retails for $40.  Schmalfeldt said 100 percent of author proceeds will be donated to the National Parkinson Foundation and the Charles Deep Brain Stimulation Research Fund at .

###

I’ve lost count of how much I’ve spent over the last couple years to raise a meager couple hundred bucks for my charities.  I’m running out of energy.  And when I retire, I’ll have less working capital to fritter away like this.

So this is my last try.  Either people will start to care… or they won’t.

I'm a 55-year old government writer-editor, diagnosed with Parkinson's disease in 2000. I had deep brain stimulation in 2007. I wrote a book about the experience that I offer for sale on the "Books" section at the top of the page. All proceeds will go to PD Research.

I’ve put together a new website to promote the new book, “Put On Your Parky Face.” In fact, if you click the highlighted name of the book over there, it will take you right to the site!  There, you will find it easier to look at sample chapters, find out how to order a copy, [...]

But Wait! There's MORE!

Want to help find a cure?  It’s time to PUT ON YOUR PARKY FACE!!!  Dust off your credit card and BUY THIS BOOK! I’m serving notice. It’s time for Parkinson’s disease patients to stop being invisible. It’s time for a nationwide effort to raise awareness about crippling degenerative neurological disorder and the havoc it wreaks [...]

But Wait! There's MORE!

I had advance word that this was gonna happen, but I’ve just gotten my consent paperwork to participate in a newly created part of the clinical trial I’ve been involved with since 2007.  They’re doing a long-term follow up on those of us who took part in the trial to test the safety and tolerability [...]

But Wait! There's MORE!

(Gleaned from the Tubes by The Parkyzoid) Boston Scientific begins trial of device to treat Parkinson’s disease Natick medical devices giant Boston Scientific Corp. has begun to enroll patients in a clinical trial of the company’s Vercise Deep Brain Stimulation System made to treat Parkinson’s disease. Read More About It HERE!

But Wait! There's MORE!

Get your headphones ready, head over to Podiobooks and get ready to listen and laugh. “You Never Miss the Dopamine (until the brain runs dry), Vol. 1″ has been released as a FREE AUDIO BOOK at Podiobooks.com.  Here’s the dust jacket version. He’s quickly becoming the Lewis Black of Parkinson’s Disease. In a series of [...]

But Wait! There's MORE!
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