Jason

Jason began experiencing horrible pain in both his feet in when he was 24, and finally saw a neurologist who diagnosed him with advanced MS after an MRI and battery of vision, hand, and walking. After his diagnosis and learning more about MS, Jason traced his first symptom back to about six years earlier. The first clinical trial Jason participated in was a drug trial involving extended-release Baclofen. At the time, Jason was taking Baclofen three or four times a day and the opportunity to take it once a day motivated him to sign up for the trial. After six months, Jason informed the study team that he did not notice any change and chose to withdraw from the trial. Since then, Jason has participated in a couple of research studies, one of which involved completing a survey upon entering and leaving the trial as part of the control group. Jason also participated in another research study that aimed to research how increased activity could affect one’s outlook on MS. In this study, Jason took a survey at the beginning, talked to an activity coach throughout the study, and completed a survey at the end. While Jason hopes that the research team learned something from the trials, he did not think the studies were useful for him.  

Jason’s main motivation for participating in the study was taking advantage of a chance that this could help him manage or treat his MS. He also believes “that research is important” because “there's so much we don't know about MS.” Jason is very interested in knowing the findings of the studies and has asked the study teams to provide him with a copy of the results. He wants to know “what did you learn? You spent all this time and . . . you put all this work into it. What did you learn?” To date, Jason has not received any information. Thinking back on his previous clinical trials, Jason participated with the expectation that he would get something out of the experience, but not knowing what that something was. Now, Jason has shifted perspectives and expects to get nothing out of his research trial experiences. He simply participates in the hope that somebody else will benefit. He still holds onto hope that “one day” someone will say, “well, we learned that this cures MS.”