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LETTERS: Volunteering for Research

Harris, Brenda B.

doi: 10.1097/01.NNN.0000389989.96431.d3

Jacksonville, FL

As both my parents suffer from movement disorders—dad with Parkinson's disease (PD) and mom with benign essential tremor—I have managed their health care for more than 10 years and have wanted to do my part to spare other family members from suffering. In 2009 I volunteered for and was accepted in the Biomarkers of Risk of PD at the National Institutes of Health (NIH) in Bethesda, MD. My travel and lodging expenses were covered and I paid for meals. Unfortunately I was not accepted for the clinical laboratory testing, and I still don't know why.

Just this week I signed up for TrialsFlash through the Michael J Fox Foundation. I am excluded from current trials as I am a first degree relative of a PD patient and have not been diagnosed with PD.

Two of my younger siblings currently exhibit more PD symptoms than do I. Both have no sense of smell, and one has REM Sleep Behavior Disorder, which has been linked to PD. They lived with our parents longer than did I in the home where we had well water. Neither wants to participate in research, nor do they want to know if they are genetically predisposed to suffer from PD. That's OK; I do not push.

If you learn of any trials for which I might be suited, please let me know. Throw me in, coach, I'm ready to play!

—Brenda B. Harris

Jacksonville, FL

©2010 American Academy of Neurology