Parkinson's Clinical Trial Companion Navigating Clinical Trials | Page 27

Dancing for Science

A decade has passed since Manny Torrijos discovered he has Parkinson ’ s , and he ’ s been contributing to research ever since . Over the years , he ’ s done a variety of trials — everything from filling out online surveys about his non-motor symptoms to testing a therapy to ease motor symptoms . Knowing that every case of Parkinson ’ s is unique , Manny experiments to find opportunities that work for him .
“ Awareness of my changing body helps me develop my own strategy for continued research participation ,” Manny explains . As his Parkinson ’ s evolves , he ’ s noticed increasing imbalance , stooped posture and rigidity . Balance and posture problems are hard to correct with the currently available medications but even so , Manny ’ s medications may not be working as well as they used to . The benefit they provide can be irregular or short-lived .
Manny sees his situation as a way to push forward research toward new and better therapies . When he found a dance study targeting many
of his symptoms , he quickly enrolled . Because he enjoys dance and feels it “ lets him move in ways his body is able ,” this is his preferred type of research . He ’ s participated in several studies of different forms of dance for both motor and non-motor symptoms .
It is a little harder for him to get around these days , but that doesn ’ t stop Manny from keeping weekly research commitments . He simply makes adjustments such as adding extra travel time . For him , the extra effort is worth the positive feelings he has when interacting with other patients and researchers .
Manny ’ s take on research : “ If we all focus on what matters to us rather than what is the matter with us , we will find that we can all be part of the cure . There are research opportunities we all can do to enrich our lives .” People with Parkinson ’ s may experience changes in movement , emotion and memory . Dance helps Manny manage these changes , and for him , he says “ it ’ s the next best thing to a cure .”
Watch more of Manny ’ s story at michaeljfox . org / ParticipantPack .
Chapter 2 — Research Participation throughout Your Parkinson ’ s Journey
25 Navigating Clinical Trials : A Guide for Parkinson ’ s Patients and Families
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