Personal Stories

Taunting the Monster

Taunting the Monster

Bill Schmalfeldt
Elkridge, MD

There are two things I need to get me through the day.  Gail, my wife of nearly 20 years, and my sense of humor.  And Levodopa.

OK.  That’s three things.  I need three things to get me through the day.  Gail, my sense of humor and Levodopa.  And my dogs, Raven and Shiloh.  And that makes five things.

OK.  I need five things to get me through the day.  Gail, my sense of humor, Levodopa, Raven, Shiloh, my trusty cane, public transportation, the understanding of my boss and co-workers, and… how many is that?  Never mind.

I need a lot of things… definitely more than five… to get me through my day.

I was diagnosed at the ripe old age of 45 at the Parkinson’s Clinic on Bob Hope Road in Miami.  I first noticed I was dropping things with my right hand and my thighs would cramp when I walked up stairs.  After a long trip through the medical maze (“But it can’t be Parkinson’s,” actual medical doctors with degrees on their walls said.  “You’re too YOUNG.”)  Dr. William Koller at the clinic in Miami pulled the trigger on the diagnosis on January 30, 2000.  He also told me there are worse things in the world. 

“It’s not a death sentence, it’s a life sentence,” he said.

In June 2007 I underwent deep brain stimulation at Vanderbilt University Medical Center in Nashville as part of a clinical trial looking into the safety and tolerability of DBS in early PD.  If this study pans out, a day may come when DBS is offered earlier in the course of the disease.  Unless a cure comes first.

In the meantime, my worst problems are in the area of walking and postural instability.  I walk like John Cleese in the Monty Python “Ministry of Silly Walks” sketch.  If my center of gravity gets too far off-center, I’ll topple over.  I have had one serious fall so far and several near whoops-a-daisies.

There have been changes.  I gave up driving in May because I just don’t feel safe behind the wheel.  We have twin beds now because I will lash out in my sleep sometimes.  But we never go to sleep at night without reaching out in the gap between beds and holding hands and reminding each other of our love.  I couldn’t do this without her.  Or my sense of humor, my cane, my levodopa, my DBS devices, my friends, my family, my co-workers and other folks in the PD community who I know are working day and night to find a way to slay this monster.  In the meantime, I do my best to taunt it. I go to work every day (from home) as a writer-editor at the NIH Clinical Center.  I update my personal blog, "My PD Diary", I keep in touch on Twitter (bschmalfeldt) and Facebook (look me up!).  I live my life richly and fully to the best of my ability. What else can one do?  It’s a life sentence!  

Read my book, Deep Brain Diary: My Life as a Guy with Parkinson’s and Brain Surgery Volunteer. Proceeds of the sale will be donated to NPF.

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