Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 37

A Family Rallies to Support Genetic Research In 2008, P atti Meese was having fun, enjoying her family and loving life. She had a successful career and lots of friends. “ When Parkinson’s hit, I spiraled into a deep depression,” she says. “I stopped talking to my friends, going out and exercising. I s tarted shuffling and walking with a cane for balance, and my left leg was dragging.” Things turned around for Patti after she began physical therapy. A s she gained strength and stamina, she decided to educate herself about Parkinson’s disease ( PD) a nd the latest research. “I wanted to help myself feel better and move better,” she says. While participating in a study, Patti got surprising news: She carries a mutation in the LRRK2 gene, which is linked to PD. Although no other members of her family have shown signs of PD, Patti wondered if any of them also carried a mutation. “ I gathered everyone together at a family barbecue,” she recalls, “and asked if they would help move Parkinson’s research forward by getting tested for this mutation.” Patti explained that a genetic counselor would guide them through the process, answer questions and help them understand the results. Her daughter and four sisters volunteered right away. Ultimately, her daughter and one sister found that they carry LRRK2 mutations. Neither has PD, but both are now enrolled in Parkinson’s studies. Participating in research has made Patti feel more confident in her life with PD, and being a research advocate gives her a sense of purpose. O ver time, she has come to see her PD journey as an opportunity or even a gift calling her to action to help others with this disease. She says, “ I hope to help people live a better life and move research forward — maybe even help pave the way for finding a cure.” Watch more of Patti’s story at michaeljfox.org/ParticipantPack. s e i l i m a F d n a 2 s — t n e Research i t a P s ’ n o Participation s n Chapter i k r a P r o 3 f — e throughout d Genetics i u G A : s l Your a i r T Parkinson’s l Parkinson’s a c i n i l C g n Research i t Journey a g i v a N Chapter and 35 5 3