Rhonda

Rhonda was diagnosed with MS at the age of 20 after experiencing blurry vision, loss of function in her left arm, loss of feeling in her fingers and hands, and leg spasms. Rhonda later heard she did not have MS, so after receiving mixed messages from health care providers she did not pursue a diagnosis. Thirteen years later, Rhonda began to lose feeling below the waist and experienced vision loss, and at that time it was confirmed that she had MS.

Rhonda has participated in several research studies. She was first enrolled in a cognitive study where she played a daily video game on an iPad to improve cognitive function. While Rhonda does not think her cognitive function improved, she feels that her experience was still fun. A couple of years later, a research assistant suggested that Rhonda enroll in another clinical study that used “electrical shock therapy for cognition.” Because she was moving to another state, Rhonda only did one visit. Rhonda has also participated in a clinical study aimed at developing an exercise program for MS which she really liked.

Having been denied participation in many clinical studies, Rhonda finds it very disappointing and unfair that researchers do not want people in their 50s or people who are in wheelchairs included in their studies. When deciding whether to participate in a clinical study or not, Rhonda considers the distance and transportation most of all. She feels that it is a participant’s right to know how they did in a research study and is aggravated that she did not receive results back from the researchers on any of the studies she participated in.

Rhonda enjoys the “process of meeting new people, of participating in research, and giving back” to the next generation of people with MS. Since MS is “not cured” yet, participating in trials is Rhonda’s way to do her part in “helping develop a therapy to make things better, or a treatment to make cognition better, and maybe even make” her own experiences with MS better.