Rochelle
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Rochelle’s first symptom occurred in 2013 when she got out her car and slipped on the snow. Though she laughed it off and carried on, a couple of days later, her whole right side was not functionable and started tingling. She thought she had had a stroke and spent two weeks in the hospital where she underwent numerous tests and scans. After receiving steroids, Rochelle’s symptoms disappeared, and she was released from the hospital. She focused on raising her daughters. Five years later, Rochelle lost control of the left side of her body, stumbled into the wall, and experienced difficulty writing. She was admitted to the hospital where she again underwent many tests but did not receive a diagnosis. Her symptom of walking at a slower pace stuck with her this time and she soon was diagnosed with Multiple Sclerosis by an MS specialist.
When Rochelle received her diagnosis, she didn’t want to think about MS. She worried about whether she was going to be able to function normally again. Rochelle first treatment was Copaxone, which required daily self-administered injections. However, she continued to experience symptoms and switched to Tysabri. She worried about serious side effects, but her doctor assured her that she would be closely monitored. She has not had a relapse since starting on Tysabri.
After her diagnosis, Rochelle sat down with her daughters and explained to them that MS has to do with her nerves and assured them that everything was going to be fine. At first, Rochelle tried to minimize her activity because she worried that moving too much would exacerbate her symptoms. It was stressful for her to be unable to do things with her youngest daughter. Now that Tysabri has been alleviating Rochelle’s symptoms, her daughters feel better about Rochelle’s MS. Rochelle’s father has been very supportive of her and has accompanied her to medical appointments to make sure everything was OK.
Over the course of her MS, Rochelle experienced walking disturbances, affected bowels, and impaired vision. Rochelle has not had any new lesions on her brain in a year. While she can walk at a normal pace, Rochelle notes that she sometimes walks over to the side a little bit, into the grass. Rochelle completed an MS awareness walk with the support of her family and friends. The MS walk allowed her to see a lot of people who had MS and the varying degrees to which MS can affect mobility. Rochelle worries about how long she will live but she prays every day to “just make it through until God says so.” Rochelle has learned to manage her stress by simply responding with “OK.” She has gotten through with the support of her faith, her children, and her family who have never given up on her.
Clinical Trials Experience:
Rochelle had a good experience participating in a clinical study that aimed to assess the benefits of taking vitamins along with her treatment medication. Rochelle was asked to take one vitamin every day and go to a medical facility for blood work roughly every three months for a year. The researchers also performed some tests on Rochelle, such as sticking her with a safety pin to see if she felt it and assessing her walking and bodily movement. The clinical trial also gave Rochelle the opportunity to ask her doctor, who also ran the study, any questions that she had.
Rochelle’s primary motivation for participating in the study was to learn some more about multiple sclerosis, specifically what she can do, what she cannot do, and what she needs to do. While Rochelle never received information back regarding her individual health response to taking the vitamins, she did get individual test results back. At the end of the study, Rochelle went in to do blood work, an MRI, and a physical where she was asked to walk, jump, and do different obstacles on which she was graded. Rochelle feels that the study had a nice, problem-free ending which she is glad and thankful about. She hopes that her participation in this study benefits somebody. Rochelle feels like the vitamins were beneficial for her and plans on continuing to take the vitamins for the foreseeable future.
Rochelle didn't want to pay a copay when she felt fine.
Rochelle didn't want to pay a copay when she felt fine.
And then they wanted me to come back and see this specialist, Dr. [NAME]. And that was a $40 copay for this specialist. And I'm like, I don't know. I never really followed up with it since I felt fine. So, I did not follow up with it. And I just can't-- I came back one time, like a follow up. And then that was it.
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That was back in 2013, and I just felt like my body-- even though I still should have followed through, and went somewhere else, and seen what it was, that was because I didn't feel like it was beneficial for me to come and pay $40 for me to walk around. And I was feeling fine. Another thing they did was they gave me a prescription for therapy. And I think that was $50 per therapy. And I didn't go to that because I assumed, I was OK. And I should have probably went to another doctor. Not the therapy, but went to another doctor to get re-diagnosed, or something like that, to actually see what was going on that they couldn't find out. So, I think I would've really paid it if it was really something still going on. But because my body went back on, and I was a mother of two, I just went back to living, not even thinking that something else would happen years down the line. And five years down the line, something happened. I just assumed I would be OK. So definitely, I tell all my friends now, family, you feel something, something's hurting, go and check it out immediately. So, I just thought I didn't need it anymore. But I definitely should have just went and followed through, and got more treatment, and see what else was going on back then.
Rochelle recalls the process of finding a disease modifying therapy that worked for her.
Rochelle recalls the process of finding a disease modifying therapy that worked for her.
I was taking Copaxone© first, which I was giving myself a needle once a day myself. And that wasn't strong enough for me. My eyes went crossed either in March of 2019. And then Dr. [NAME] changed to me to Tysabri©. And it's been much better ever since.
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And then she put me on the Copaxone© first, which was a lot for me. Because I never thought I would be giving myself a needle every day. And then I had to try to find different spots to put the needle. And it was making my skin sore. It was a lot. So, I did that for-- so that was from September to March. So that was only-- October-- yes, I think I got it in October. I started in October 2018 and that was November, December, January, February, March. So that was only five months. And then I had another relapse with my eyes. My eyes crossed. And then I called her freaking out. I was like, “Oh my god. Like, we're going to have to change this medicine. And we got to change it now. Because it's not working.” So, then we changed it to Tysabri©.
INTERVIEWER: So how long have you been on the Copaxone©-- or the Tysabri©?
Since last year. So, a year and a half, right. Since March of 2019. Yes. So, I guess around April 1. Because it was March 19 was when all this happened with my eyes. So, I would say maybe April 1 is when we started with the Tysabri©. So, it's been a year and a half now.
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Well, I know it helps me a lot now because-- with the change in the medication. The Copaxone©, I think, affected me more in a bad-- not a bad way, but I was more down about it. Because I had to give myself a shot every day. And then when it wasn't working, I was really stressed out about it. But the Tysabri©, I kind of look forward to going to get it. OK, I'm just going to get my medicine. And I look forward to getting it because I feel like it's going to help me get through it.
Rochelle was concerned about being without medication when she switched insurance.
Rochelle was concerned about being without medication when she switched insurance.
But the Tysabri®, I kind of look forward to going to get it. OK, I'm just going to get my medicine. And I look forward to getting it because I feel like it's going to help me get through it. I was changing insurances. Oh my God. And they were going to make me wait. Until I said, “Oh, no, no, no. No, no, no. No.” So, I got some kind of program to hold it over until my insurance kicked in, the new insurance kicked in. And I was like, thank you so much. So, then they met each other. So, it was effective. And then it took care of it. But they let me get the insurance while it was processing my other insurance. But they were getting ready to make me wait and everything. I was like, oh my God. And I was thinking in that little gap of a time, something might happen, like a relapse or something.
Rochelle reflects on her experience with her first MS Walk.
Rochelle reflects on her experience with her first MS Walk.
It was really nice. I had a lot of friends and family that came out. And I had pictures and everything. And it was nice. We walked around. But then when you're looking at different people out there-- like I was saying, some of them were in wheelchairs, some of them were in walkers, some of them were walking differently. So, it just-- but they had a lot of people out there to cheer you on. They gave out necklaces and everything. My family was talking about how many goods they got. They got all these snacks and stuff. And they were like, “They gave out so much stuff!” They gave out key chains and all-- they gave out a lot of stuff. It was really nice. But just looking around and seeing everybody really fighting through this, it really opens your eyes. And like, OK, just really take this seriously, Rochelle. Take care of yourself, make sure you make all your appointments, and make sure you check up on everything. Just makes you think, you know, open your eyes and really take it seriously.
Rochelle didn’t want her children to worry about her.
Rochelle didn’t want her children to worry about her.
We had to sit down and talk about it. Well, the way I explained it was it has to do with my nerves. And the number one issue of it is stress. And this is something that I have to work through. And they feel much better now, much better than when I first started dealing with it. So, I just explained to them-- I just want them to do the best they can. And my oldest daughter just finished-- she graduated from college. She's an IT major. So, she got a job with Microsoft. So, she's doing good. I know. And I just wanted them to keep pushing-- you cannot worry about me. I'll be fine. I'm going to take the medication, and everything's going to be fine. So, I just explained to them that it was, like, with my nerves, something with the nerves. And I just have to take medication to help me get through it. Yes, so they were just listening. And they probably looked it up as well. They probably looked it up on their phones, and everything, as well. But they were fine once I started getting better.
It was stressful for Rochelle to manage her symptoms and support her daughters.
It was stressful for Rochelle to manage her symptoms and support her daughters.
INTERVIEWER: So, during those periods where you were having more symptoms, can you talk about what it was like to be a parent during those times?
Yeah, it was very stressful. Because I would just be laying in the bed. And I would see my youngest daughter just walk past my room. She would be looking to see if I may be up or going to get up. So, it was kind of-- it was very stressful just not being able to get up. Because we would always get up and go out or doing things. Because she dances, too. So, we were always going to either dance, or school. She runs track, so we were always do something like that. My oldest daughter was in college. So, she was in Delaware. So, I would just talk to her, text or call. But my youngest daughter is the only one that really saw it on a daily basis. And she probably was very worried. But I would tell her, “I'm OK, I'm just resting.” And I really was trying to rest, thinking I needed to rest a lot. Just so my body will be OK if I really needed to get out and go.
Rochelle talks about changes she has made to deal with stress.
Rochelle talks about changes she has made to deal with stress.
I try to remain calm, and not react to it as fast as I used to. I used to try to do everything myself. So that's another thing. I try to just relax, and when someone says that they're going to do this, and do this, I learned how to say, OK. I never used to say OK. Never. So, I've learned how to do that. OK. Yes, so just relax, and let it roll, let it ride. It'll work itself out. So, I've learned how to do that as far as stress. I used to worry about and do everything myself, and stress myself out getting it done. So, I've learned how to stop doing that a lot.
Rochelle feels she can move forward since getting her diagnosis.
Rochelle feels she can move forward since getting her diagnosis.
I don't think about myself as bad. But I used to think-- I don't think of myself as-- I don't know, I don't think too bad about it. At first, maybe a year ago, I was thinking like, oh, how am I going to make it through. But now, after learning and living through a little more-- I'm on two years now-- I just feel like I can move forward. I'm going stronger. So, I'm getting through it even better and stronger. So, I'm a lot better than I was a year ago. So, I do feel much better. I don't feel bad about myself. I do worry, like I said, about my eyes. I do worry about that sometimes. But I just take it-- just go ahead and go. I don't let it stop me anymore. I don't just sit in the house anymore. I do try to just move and go do things, just take it one day at a time.
Rochelle tries to relax and stay calm to deal with stress.
Rochelle tries to relax and stay calm to deal with stress.
I try to remain calm, and not react to it as fast as I used to. I used to try to do everything myself. So that's another thing. I try to just relax, and when someone says that they're going to do this, and do this, I learned how to say, OK. I never used to say OK. Never. So, I've learned how to do that. OK. Yes, so just relax, and let it roll, let it ride. It'll work itself out. So, I've learned how to do that as far as stress. I used to worry about and do everything myself, and stress myself out getting it done. So, I've learned how to stop doing that a lot.