Reasons for Participating

Even that helps me to understand whether I should or shouldn't. The reason why I moved to [INSTITUTION] was because I wanted to be participating in trials. And because having a hope. Every trial was a hope for me.

When you know that there is no, there is nothing, that there is no solution to it, to your disease. And then you see that the clinical research is going on, that's when you create a world called hope. Hope was a very big factor. Hey, will it be possible that if I go into those research, I might be the one who will be cured first. Why not try to give it a try. I think that that big word of hope changes the perception of even your treatment.

And so, I was curious, is there something looming that the general public doesn't know about yet that's kind of still behind the veil of the physicians, the MS specialists, that I could get the inside track on and could give me an advantage against this disease? And again, at the time, the one that had just been approved was formerly that. It was this kind of like hidden gem that was now widely available. So, I felt like I was getting that inside track even without being in a clinical trial, but that was my motivation. Is there something else that I wouldn't find out about from Googling that might be an incredible drug and could really help me?

Can you tell me how going on this clinical trial fit in with your general approach to treating MS and what made you decide to participate in the trial?

I guess it was after the three injectable medications, Betaseron, Avonex, and COP1, copolymer 1. I guess it was the next thing that was supposed to be the next great possibility for MS. And when that thing ended, that's when I did the Novantrone as sort of a last ditch-- I mean, that seemed to be kind of the last-ditch thing that they wanted to try for me. And I gave that the full everything until they said, “OK, you've reached now your limit.”

And clinical trials are scary because they’re so unknown. And it’s hard to know what the outcome’s going to be. But to me, it was worth it because it’s better than—it’s better to have tried than to have not tried, if that is—I mean like it’s just I mean bottom line it’s better to fight than to sit there and be beaten. So chemical—or the trial process, when you hear that trial it’s like you’re going to try what on my kid? You know, no, I don’t want you to try to beat this cancer, I want you to beat it. But it’s like, you have to start somewhere. And my thing is, when I first signed the papers for to be a part of the trial was-- if he made it through, great. If he didn’t, they learned, and they learned something that can help the next child.

How did you kind of make decisions about which treatments you were going to look at next?

It was mostly I wanted a pill. That was really the driving force. I didn't want to do a shot all the time, and that was the only treatments for MS. So, I wanted to get on a clinical trial that had pills. That was really the driving force, that's what I wanted.

I have no insurance, and I needed medicine, honestly. And then, I just, I had heard—at least, definitely with the Tysabri, whenever I got more involved with the MS community. I saw— heard so many positive reviews, and, you know, everybody had been very positive with it. So, that’s why I chose that one as well. But yeah, the not having an insurance thing is kind of a big one.

So, the first motivation of course, was to see if anything might help. But then the second motivation, especially at the beginning was that, well, even if it doesn't help, it's just a reason for being, right? So, yeah, I feel like I'm not really contributing in the other way, any meaningful way. So at least, that's how I found my mission in this world, is that maybe I'm useful for someone who's researching this disease.

It's so important, and I wish there were more opportunities for people with all sorts of disorders, diseases, whatever, to share. So that it was more—people could realize how normal it is to have something wrong with you. And we could move past it and make more—make room for us in society. Because we do have things to offer still. It's just, we might need a little extra something to help us get there. And those haven't been priority for a bit, figuring out how to bring us into the able world.

And like I said, if I can help somebody else, you know, I mean when I was a counselor and I– and I could help somebody, then I felt like I felt like I had a purpose in doing what I was doing. You know, and then of course all that's taken away from me, because I can't work now. So with this, again, it's where—I'm doing what I can to help people that come after me, because, you know because I've been at this a while. So that gives me a sense of purpose. It's like, at least I didn't just sit back and have MS. I sat back, had MS, but I at least helped, maybe, develop something new or maybe some other treatment platform or, or something, I helped for something. You know, and that's important for me, is to stand for something.

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.

I think just being from the medical standpoint, I'm comfortable with doing them. And being the fact that I'm used to being in the hospital and that type of environment, it doesn't really bother me, just the fact if there's a huge adverse effect. And being the fact that I'm retired, I have more time to be able to go down and contribute to it. Mileage, you know, for me to drive an hour or two doesn't bother me. I just figure it gives the researchers more opportunity or more information to help with their research.

Because I think research and science is really, really important, and even more important now that it is—I want to be part of that process, regardless of compensation, as long as it's not too much inconvenience. You know, I wouldn't want to travel in and out of a major city and not be compensated. But as long as the study feels like it pertains to where I'm at and where I've been and where I see myself with my medication, I look to that as how is the research going to be helping?

You know, I come down here because I—I feel like any information that can be found out about me can help others in my family—my daughters. And also any—my experience may be able to help someone else. I'm participating in a clinical study at this university. So, it can also—I would say, at the beginning, I said, “It may not help me. But it may help others.” And I was perfectly fine with that. But I've had about a 60% shrinkage in my tumors, which is absolutely amazing. So instead of having maybe a year to live, now I can look forward to a little bit longer. And say, “OK, we're going, you know, we’re going to fight this."