Clinical Trials

Grace

Outline: Grace was diagnosed with MS when she was 26 years old after not being able to move her toe. At first, her doctors doubted that something was wrong, however Grace persisted to get a diagnosis and eventually found the medical care she needed. Grace participated in clinical trials because she has many family members with MS and also enjoys connecting with others.
Background: Grace, age 57, lives in a small town and, because MS symptoms made it hard for her to work, she retired at the age of forty. Grace identifies as a White woman.

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Grace’s first MS symptom was an area of numbness on her leg during college that she couldn’t feel. While that symptom went away, over the next five years little things started to appear that would come and go. Grace switched to an insurance company that allowed her to see a neurologist and at 26 years old, MRI testing confirmed she had MS. Because she has five cousins with MS, Grace was interested in participating in a genetic research study. For this study, Grace and her family members that were living at the time donated blood and provided information about their MS to the study team. The research team was ecstatic to get the information and were happy to share the results of the genetic testing with her.

Grace has also participated in a year-long exercise research study and another one aimed at studying MS and aging through time. In that study, researchers asked her questions like “how do you function,” “how do you feel your world is,” and “is your world smaller through a period of time?” She was involved in another study that studied cognitive fatigue, as well as a physical study that measured the difference between her performance on treadmills and bikes.

When looking at study listings, Grace prefers to participate in virtual or remote studies since she sometimes finds it difficult to be on-site. While she understands that researchers have their reasons for not sharing her study results, she wishes that they could share that information with her particularly regarding her performance on cognitive tests. Grace enjoys participating in studies because she is interested in seeing how the information relates to her and connects her with other people.

 

Grace enjoys participating in research studies.

Grace enjoys participating in research studies.

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So that was interesting from like a genetic standpoint, but the studies, to me, are interesting because I like working with the students, I always want to know what they're doing, what they're studying, where they are in their studies and try to encourage them. I like to do the studies because I think they're interesting. I want to see how it relates to me, and then I see through the years the changes, how things have progressed. And so, I feel that it's important to do those. And I like connecting with people all over the United States. That's been interesting for me.

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