Rhonda
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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.
Rhonda says she participates to help the next generation.
Rhonda says she participates to help the next generation.
I enjoy the process of meeting new people, of participating in research and giving back because I feel like that's what people who had MS before me, they're the reasons we have these medications. So, I feel like I'm doing my part for the next, unfortunately, generation of people with MS. I mean, it's not cured. So hopefully I can do my part in helping develop a therapy to make things better, or a treatment to make cognition better, and maybe even make me better.
Rhonda reviewed the consent form with her clinical trial team.
Rhonda reviewed the consent form with her clinical trial team.
They sent it to me through DocuSign, something like that. And it was very, very long, a lot of reading. And I'll be honest, I didn't read it all because my eyes will not focus for that long. And they explained it to me, separately, over the phone. And I signed it, and then we went over it again the first day that I'm there for that four-trip one.
Rhonda says the money she received did not offset her costs.
Rhonda says the money she received did not offset her costs.
The first one I did it was four trips, and that money added up, so I kind of needed it to pay for the transportation. It wasn't really enough to pay because I'd have to pay paratransit. Then I'd have to pay another service to get there. And it was like a 16-hour day because even if it's only four hours in the lab, I still have to wait for another bus to come and pick me up because of what it is. It's kind of like a paratransit travel bus. It goes all over the place dropping people off for medical appointments in the city. So, it's a 16-hour day. So, I go through that for four hours, and sometimes I have to wait for eight hours. So, you got to pay for food, then you got to pay your way back home. So, it adds up. And a lot of times, the money they pay you doesn't always cover getting there. And I'm lucky I didn't have to pay for parking because parking was like $30 an hour. It's crazy. Yeah. The one I gave the money back to—donated it back, I only had one visit, and I was in a better place financially than I had been in years past. So, I felt that it was important to donate that back because I didn't need it.
Rhonda enjoyed playing the video games in her trial.
Rhonda enjoyed playing the video games in her trial.
What I did is it was a video game to improve cognitive function. I really enjoyed it. I would play on an iPad every day. And I'd go, I think, once a month and get retested to see if there was improvement. I don't think there was, but it was still fun.
Rhonda urges those who run trials not to exclude people based on age.
Rhonda urges those who run trials not to exclude people based on age.
Include us old timers. I mean, I’m 51, and I feel like I’m almost irrelevant in the clinical trial world. It’s like, I’m not going to stop having MS because I’m 51. I’m not going to stop progressing. I’m not going to stop relapsing. Why don’t you think of us, even just a small percentage? How do you know it won’t help? Why do you have preconceived ideas that what you’re doing isn’t going to help us? Maybe it will. You never know.