I Don ’ t Have Parkinson ’ s , but I ’ m Helping Researchers Get to the Bottom of It
Terry Goldin , age 67 , retired architect , Wilmette , Illinois
Things that go bump in the night
I don ’ t have Parkinson ’ s disease ( PD ), but I do have a condition known as REM sleep behavior disorder , or RBD . I never expected it . My wife , Holly , noticed that I was acting out my dreams . I used to play a lot of basketball , and I would dream about intercepting a pass , or stealing the ball — except the ball would actually be the glass lamp on the bedside table , and it didn ’ t bounce when I tossed it across the room .
A desire to increase understanding
When the doctor confirmed I had RBD , it was reassuring to know that what I ’ d been experiencing had a name and treatment plan that seemed to work . The doctor also told us that RBD is linked to an increased risk of Parkinson ’ s , however , and this was worrisome . But I ’ m focusing on the positive . I decided I would participate in research . Once I retired as an architect , I immediately jumped on the bandwagon and found the PPMI study . I ’ m motivated to help deepen understanding about this disorder and its relationship to Parkinson ’ s . And if I do start showing signs of Parkinson ’ s , I ’ ll find out sooner than later and I ’ ll have relationships with doctors , researchers and others who know a lot about the disease . That will help me start managing it early on , which can contribute to things going better over time .
Leading the charge
I ’ m proud to participate in the PPMI study . In addition to answering questions about my health and lifestyle , I ’ ve gone through a battery of tests , including an MRI , but it hasn ’ t been difficult . I would encourage anyone to do it , especially if they have RBD . It ’ s important to me to do the right thing and be a leader in trying to get to the bottom of this thing .
KEEP IN MIND
+ Acting out dreams , or REM sleep behavior disorder ( RBD ), increases risk of Parkinson ’ s .
+ A sleep or neurology doctor can diagnose and treat RBD .
+ A Parkinson ’ s doctor , a movement disorder specialist , can help you learn more and watch for changes of Parkinson ’ s and related conditions over time .
+ People with RBD can help researchers prevent Parkinson ’ s .
Better Brain Health | Section 02 — Understanding and Living with Risk Factors 31