Section 02 — Understanding and Living with Risk Factors
I Lost My Sense of Smell but Gained Perspective on Parkinson ’ s
Joseph Capizzi , age 74 , retired engineer , Philadelphia , Pennsylvania
From volunteer to patient
My wife has had Parkinson ’ s disease ( PD ) for about 15 years , and along the way , she started attending a support group . That ’ s how I heard about the PPMI study . I decided to participate because I wanted to show my support .
My own Parkinson ’ s journey
Many years ago , during a meeting of my wife ’ s support group , they handed out little cards with different scent strips on them , and my wife brought one home for me to try . One of the signs of Parkinson ’ s is a loss of sense of smell , and that ’ s when I learned that my own sense of smell was diminished . But for a long time , I didn ’ t exhibit any other signs of PD . Then , I noticed that I had some tremor , went to the neurologist and was diagnosed with Parkinson ’ s myself . Emotionally , it didn ’ t affect me that much . I ’ ve had a wonderful role model in my wife who leads a very busy life , and who doesn ’ t worry about what tomorrow may bring . I ’ ve tried to adopt that outlook .
The power of data
I recently had my 14th study visit for PPMI at the University of Pennsylvania site in Philadelphia . I believe in the power of amassing a comprehensive database . For PPMI , year after year , they collect the same kind of data with the same people . That ’ s going to be very powerful down the road . That ’ s why I ’ ll keep going as long as I can .
38 The Michael J . Fox Foundation for Parkinson ’ s Research