Advice for newly-diagnosed Parkinson's patients

After 12 years with Parkinson's disease (PD), 57-year old Bill Schmalfeldt has this advice for newly-diagnosed Parkinson's patients.

"Keep doing what you do. And when you can't do that anymore, keep doing what you can – whatever that is."

For Schmalfeldt, that means writing. By early 2011, the progressive neurological disorder had affected his voice. Since writing and recording podcasts for the Clinical Center at the National Institutes of Health in Bethesda, Md., was the biggest part of his job, Schmalfeldt said he felt he had no other choice than to seek early retirement.

"I have trouble walking, I have trouble talking, but I can still write pretty well," Schmalfeldt said. "If you can't do what you did, you do what you can do."

In addition with maintaining a news/opinion website, "Turning Over the Rocks", Schmalfeldt has penned three books on the topic of living with PD. "Put On Your Parky Face" begins with the challenge of getting diagnosed with what Schmalfeldt called "an old guy's disease at the tender age of 45" at a National Parkinson Foundation (NPF) clinic in Miami on Jan. 31, 2000. Seven years later, while working for the NIH, Schmalfeldt volunteered for a clinical trial at the Vanderbilt University Medical Center in Nashville.

"The idea was to see whether or not it was safe to perform deep brain stimulation done earlier in the course of PD and whether the operation could be tolerated by the patient," Schmalfeldt said.  His book tells the story of his involvement in the experiment and ends the day Schmalfeldt retired, March 13, 2011.  "Seemed to be a good place to wrap things up," he said.  But he still had two books lingering in his dopamine-deprived brain.

"You Never Miss the Dopamine Until the Brain Runs Dry, Volumes 1 and 2," are a series of humorous essays about such things as freezing of gait, how to react to the way people react to a disabled person and other bits of Parky Wisdom, Schmalfeldt calls it.

"The day will come soon enough where you can't do what you love anymore," Schmalfeldt said. "Until then, do what you can. Stay active."

SOURCE Bill Schmalfeldt