Jennifer A
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Right around when she was 30, Jennifer A. began to experience numbness in her toes, which eventually spread to her ankles and knees, and she began to experience blurry vision, stiffness in her legs, lightheadedness, and numbness in her torso. Jennifer decided to go to her nurse practitioner who recommended a brain and spinal cord MRI. The doctor informed Jennifer that she had brain lesions and diagnosed her with MS. Jennifer became involved in clinical trials after looking on the MS website for updates on new medications for MS. Thinking that clinical trials were all medicine-related, Jennifer was pleasantly surprised that there were clinical trials for lifestyle changes. Jennifer felt empowered to get involved in these studies where she could “help science” while making changes that fit her lifestyle.
Jennifer’s first clinical trial experience was a study for newly diagnosed MS patients and aimed to help them cope with the mental uncertainty. For eight weeks, a social worker called Jennifer once a week to walk her though a cognitive behavior program “talking about the uncertainties, what parts of the uncertainty of MS were hard” for her and coping mechanisms. Jennifer learned that she dealt with uncertainty by exerting control. She spent “exorbitant amounts of time Googling and learning everything about MS” and the study taught her how to balance learning about MS and channeling her actions into other coping methods.
Being newly diagnosed, Jennifer identified with the uncertainty of MS and struggled with what it would mean for her. Jennifer decided to participate in the study because she felt she could “stick” to it and saw the potential benefits for her. Jennifer attributes much of her ability to process her MS to the study. As a younger person, she saw MS as a question mark for the rest of her life. The study helped Jennifer “learn to adapt” and rethink how she thought about her future. Now, she accepts the uncertainty, but she does not let it “cripple” her.
Jennifer has also participated in a study that examined whether intermittent fasting had an impact on the gut and how she felt. In this study, she was given an accelerometer that monitored her steps, when she was going up and down hills, and on stairs. Based on those results, she was given a projected calorie intake and asked to choose an eight-hour span in which she would eat. In addition to a body scan, the research team drew Jennifer’s blood twice. Because the eating window did not fit into her lifestyle or provide health benefits, Jennifer found it difficult to eat within the time span, but she remained honest with the research team about her difficulties and “failings” until study completion.
Jennifer is currently participating in a telehealth and yoga study that tests the benefits of stretching and yoga, as well as the benefits of telehealth. In this study, the research team allows participants to do yoga over telehealth and sends Jennifer a spreadsheet with the names of yoga moves for her to do twice a week that are tailored for people living with MS. For Jennifer, this study not only helped her spasticity, but made her feel that she was “truly helping” her community by showing the “power of telehealth for people that might not have the mobility and the easy transportation to get to facilities.”
Jennifer has had great experiences with the consent process as many of the research teams “go the extra mile” to let her know “all of the efforts and safeguards they’re going through to make sure” that her data are used in the way that they are supposed to be used and kept in the right hands. The consent process makes Jennifer “feel comfortable with the organization in the study” and tells her that they care about her and not just the data that she provides. Jennifer sees her participation in clinical trials as her way of paying it forward. Jennifer feels proud to be in clinical trials where she can help herself as well as future generations of people that have MS. She appreciates the people that participated in clinical trials before her, and she appreciates the people who will continue to do it after her.
Jennifer A. talks about the important role of clinical trials in healthcare.
Jennifer A. talks about the important role of clinical trials in healthcare.
I think of it as I'm on the medication that I'm in, and my doctor's able to provide me the dietary and physical support that he can because of people that have already participated in clinical trials before me.
A lot of these trials are helpful to people outside of just MS. I'm proud to be a part of that. I appreciate the people that did it before me, and I appreciate the people that will continue to do it after me. That’s kind of my thought process on it.
And there's so much great things happening in research. You just have to be optimistic that those answers are coming. It's not on my timeline. I'm very impatient, but they're coming.
Jennifer A. speaks about finding out about clinical trials online.
Jennifer A. speaks about finding out about clinical trials online.
And then, one day, I just found myself on the MS website, and it just had clinical trials. And I think I was actually just looking through to see what new medicines were coming down, and then I realized that they were asking me to do yoga, and do intermittent fasting, and things. And I was like, “Oh, there's clinical trials for just lifestyle changes. I can do that. I can help science and just change my diet or work out more.” I should be doing that anyway, let's be honest. So that's really how I got into it. Just finding it on the MS website and then seeing that the stuff they were asking fit my lifestyle. And then, it's just been all downhill from there. I'm getting involved where I can.
Jennifer A. says she found it helpful to learn how the trial would protect her personal data.
Jennifer A. says she found it helpful to learn how the trial would protect her personal data.
I think it helps to know that they do respect your privacy. You are, in a lot of these studies, really giving them personal data. Whether it's your biological data from blood results, or your words, and your thoughts, and your experiences. So, I think it is nice, and they go the extra mile to let you know all of the efforts and safeguards they're going through to make sure that your data is used the way that it's supposed to be used and kept in the right hands of the people. And if they are going to share it, just making sure you understand. And I think that just makes me feel comfortable with the organization in the study, that they care about me and not just the data that I'm going to provide.
Jennifer A. thinks she knows what group she was in.
Jennifer A. thinks she knows what group she was in.
And then they put us into one of three groups. One was a constant, so nothing changed. One person had some behavior cognitive therapy, normal. And then one had some cognitive behavioral therapy tailored for MS. So, you're always secretly hoping you get the MS-specific one, but the worst thing you're doing is getting paid to live your life the same. So, I'm pretty sure I got in the MS-specific one, but I'll never know. But I had a social worker call me once a week and just go through a cognitive behavior program talking about the uncertainties, what parts of the uncertainty of MS were hard for me, and then some coping mechanisms.
Jennifer A. considered the nature of the trial and how complicated the procedures would be when deciding to participate.
Jennifer A. considered the nature of the trial and how complicated the procedures would be when deciding to participate.
I will say, I think that was a learning curve. I think I was just excited after doing the first one, with the mental health one, that I was like, "Oh, intermittent fasting. That doesn't sound like a big deal." And it did make me appreciate that not all clinical trials are created equal. Some will have a lot more of a mental and physical time commitment than others. So, I do think that was a lessons learned, for me, is maybe paying more attention to what exactly that means, instead of just idealistically thinking, "Oh, it's just changing your eating.” Not really thinking, “Do you actually want to stop all calorie intakes at 7:00 PM every night?”
Jennifer A. talks about having a “regular check in.”
Jennifer A. talks about having a “regular check in.”
Yes, since you’ve participated in so many different trials, what do you think makes a good—not a good trial but a good experience for the participant?
I definitely like the ones that have that regular check-in, and I do think having a structured, regular check-in is helpful too. I like when people just ask me questions, how things are going, and even maybe have a curriculum through it. I feel like some of the ones that I did actually had a thing that they were going through with topics and ways to make the trial feel like it was about me, asking me personal questions about how I was going through. I've really appreciated those.
Jennifer A. says she benefitted as a person from her clinical trial.
Jennifer A. says she benefitted as a person from her clinical trial.
Like I said, one of the ones that I did at first, that I'm really passionate about, was the one that really was for newly diagnosed MS patients helping cope with the mental uncertainty. And I really owe so much to that study. That truly helped me as a person. I mean, I'm glad I helped science, but I'm also selfishly really benefited. I've recommended that to other people. That one was really great to me.
Jennifer A. advises people to join trials that are a good fit for them.
Jennifer A. advises people to join trials that are a good fit for them.
I think my best advice for people participating in clinical trials is finding the clinical trials that fit your lifestyle, finding the ones that are easy for you to do, that align with the time that you have to participate in it, and just asking the questions. If you ever have any questions of, “Hey, what are you trying to test? What are benefits you want to have?” If you have concerns along the way, or just suggestions of, “Hey, you’re doing this, but I think this would be more helpful for people like me.” Just being an active participant, forming that relationship with your research team, whoever you’re in contact with, it’ll really help you have a great result. And honestly, I’ve enjoyed most all the clinical trials I’ve done, and they’ve honestly been enjoyable for me. I’ve learned a lot, personally.