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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