Jean

Jean’s first symptom was numbness in her right big toe when she exercised on the elliptical machine. A couple of years later, Jean started to feel an electrical impulse that traveled from her head all the way down to her right leg, pain in her neck, and numbness and tingling in her hands. Jean was first diagnosed with transverse myelitis and after seeking a second opinion finally received a diagnosis of MS at 61. Jean has been involved in multiple research studies. One observational study tested her ability to walk, manipulate her hands, and generally maneuver, while a second assessed her cognitive abilities with a math test. She was also part of another study in which she gave a stool specimen, underwent blood testing, and engaged in tests of her walking ability. She is currently involved in a study in which researchers conduct an annual brain MRI. Jean also participated in a four-month long medication trial after researchers found that she was missing a gallbladder enzyme that most people secrete. Generally, Jean did not receive results back about the clinical trials except for brain MRIs results.

Overall, Jean had positive experiences participating in studies. Generally, since Jean is used to being in hospitals, “from the medical standpoint,” she is “comfortable with doing” clinical trials. In addition, as she is retired and has “more time to be able to go . . . and contribute.”  She feels that if she can participate in research to find a cause or to find some type of medication to help, it’s well worth it. Jean sees her participation in clinical trials as her contribution to helping with MS. Jean also recognizes that as someone with Primary Progressive MS, she is part of small population of people who may not be as represented in clinical trials which plays into her motivation to help.  Ultimately, Jean does not see clinical trials as a gain for herself but more as a gain for research, figuring her participation “gives the researchers more opportunity or more information to help with their research.”