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I’m Serving Notice. People With Parkinson’s Disease NEED YOUR HELP!

Posted Nov 20 2010 10:12am
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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 had enough.  Enough of the lack of awareness.  Enough of people thinking that Parkinson’s disease is just a natural consequence of getting older.  Enough of the perception that it’s TREMOR that’s the worst part of this debilitating neurological disorder.  Enough of people not caring.  Enough of people not knowing.

I’m serving notice!

It’s time for Parkinson’s disease patients to stop being invisible. It’s time for a nationwide effort to about this crippling degenerative neurological disorder and the havoc it wreaks on American families approximately 1.5 million people currently have a PD diagnosis with 50-thousand new cases each year.

I’ve had PD since 2000 at age 45.  I volunteered for experimental brain surgery in 2007. Hopefully, I will soon retire from Federal service.  And I plan to use my remaining time, focus and energy to help fund the research that will find the cure.

That’s the reason for the new book.  It compiles all the pertinent information from “ Deep Brain Diary ,” “ No Doorway Wide Enough ,” both of the “You Never Miss the Dopamine” books, eliminates the family drama, takes out the partisan politics (except where stem cell research is concerned) and explains in as humorous and light-hearted a voice as possible, why it’s VITAL that YOU get interested in Parkinson’s disease.

In simple numbers, 1.5 million Americans have Parkinson’s.  50-thousand are added to the tally every year.  And guess what, kiddies!  The proportion of new diagnoses with Parkinson’s disease?  Getting younger !

Because the majority of people who get are over the age of 60, it has been (and continues to be) thought of as an “older person’s” disease. Because of this, the disease is often overlooked in younger people, leading many to go undiagnosed or misdiagnosed for extended periods of time. In fact, about 10%-20% of those diagnosed with Parkinson’s disease are under age 50, and about half of those are diagnosed before age 40.

Parkinson’s disease is caused by SOMETHING.  It could be a genetic reaction to something in the environment.  It could be a random genetic error in our DNA they haven’t found yet.  They don’t KNOW what causes it.  That’s why most cases of PD are referred to as “idiopathic Parkinson’s disease.”

If it is CAUSED by something, it is VITAL that researchers DISCOVER what causes it.  One you know what causes something, you’re well on the way towards finding a cure or at least avoiding the disease.  Once they discovered asbestos caused lung cancer, for instance, that led to the nationwide campaign to eliminate asbestos in the environment.

Research costs money!  Everyone is bitching about “government takeover of health care” these days.  Fine.  If you feel that way, then DIG INTO YOUR TEABAGGING POCKET and to the research of your choice!  The drug companies ain’t gonna do it!  In fact, were I the cynical sort, I would argue that has a vested interest in NOT finding a cure.  After all, if you HAVE Parkinson’s disease, you will NEED the products they manufacture, market and sell drugs, devices, all that expensive stuff.  This is why it IS necessary that government agencies like the use YOUR tax money to invest in research.  But given the political nature of the incoming House of Representatives and the fact that Democrats don’t seem inclined to FIGHT for our rights any more, it becomes more important for YOU and I to work together to help fund new research.  That’s why I support the National Parkinson Foundation and the Charles DBS Research Fund at (they’re the folks who did my DBS surgery in 2007).  In fact, 100% of the author proceeds from this book will be donated to these Parkinson’s research charities.  100% of the profits of everything I sell in my “Stuff 2 Buy” category goes to these Parkinson’s research charities.

I can’t do anything by myself.  I need your help.  Together, we can make a mighty noise.  Together, we can help raise awareness about Parkinson’s disease, about the need to fund the research.

Or, you can wait.  You can wait until it happens to someone you know.  You can wait until it happens to someone you love.  Or, you can be like me and wait until it happens to YOU!

“Serving Notice: Shining a Light on Parkinson’s Disease, Myself, and 1.5 Million Invisible Victims” will be available soon at Lulu.com it’s self-published because, like most folks, agents and publishers could GIVE a rat’s ass about Parkinson’s disease because “isn’t that an disease”?  (We touch on that in the book.)  I’ll let you know when it’s available.  It’s a 314-page hardcover and the asking price is $40.  There’s a PDF download you can get for $5.  Soon, it will also be available at Amazon, , Books-A-Million and other online book outlets.

Can you sit there every day and read this blog and NOT help?

Can you REALLY?

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.

At the moment, I find myself waiting on two doctors to come through with the paperwork I need to officially file my applications for disability retirement.  I’m guessing that once the paperwork is filed, it’ll take at least a month to get through the NIH, then another several months to make its inexorable way through [...]

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 [...]

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(Editor’s Note:  A story about another brave brain surgery volunteer.) Minneapolis, MN (PRWEB) April 15, 2009 What would prompt someone to say “Let’s stick wires into someone’s brain, run voltage through it, and see what happens!”? So asks activist and author Jackie Hunt Christensen in her important new book, LIFE WITH A BATTERY-OPERATED BRAIN: A [...]

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(Editor’s note:  For those contemplating Deep Brain Stimulation for treatment of their Parkinson’s disease symptoms, here’s some more information.) The procedure known as deep brain stimulation involves the implanting of a brain pacemaker. The brain pacemaker is a medical device that sends electrical impulses targeting specific regions of the patient‘s brain. About Deep Brain Stimulation: [...]

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Earlier today in my Facebook battle, I made mention about what a good blog entry I thought the transcript would make.  One smartassed fellow named “Thomas” (the dude with the “Bamm-Bamm” avatar) said… Enjoy your blogging. I hope you and your reader have a nice weekend! Well, I don’t know about my “reader,” but we [...]

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